LDN Experience: I've been taking LDN since Oct... - Thyroid UK

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LDN Experience

G2G2 profile image
G2G2
67 Replies

I've been taking LDN since Oct. It lowered antibodies. It was prescribed by a functional medicine doctor.

Previous Labs:

TPO 33 Range<9

Thyroglobulin Peroxidase 115 Range <2

Current Labs:

TPO 25

Thyroglobulin Peroxidase 65 Range <2

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G2G2 profile image
G2G2
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67 Replies
LiziBG profile image
LiziBG

Hi G2. I have high thyroglobulin antibodies - 829 range 0.00 - 115 and to a 22.2 range 0.00-34. Your post is the first I've heard of LDN. I'm new to doing my own research and nor relying solely on my Gp. Your post has made me look into Ldn.Glad you're doing well on it. I have hashis and am currently awaiting a gynae/Dermot appointment to test for lichen sclerosis and I've just read it can help with that as well. Thinking now if test positive for LS I will ask Gp for trial of ldn. Thanks for posting.

G2G2 profile image
G2G2 in reply to LiziBG

Hope you can try LDN. It's used for many autoimmune diseases. It doesn't help everyone.

Avidreader profile image
Avidreader in reply to LiziBG

I have Lichen Planus in my mouth ( is this from 20 years on Levothyroxine?)

I also have a bottom lip which feels constantly sunburnt type of feeling & a small lesion or lump on lower lip ? Anyone else ? I am on AIP diet 🤢restrictive but has changed my life ! I also avoid fluoride toothpaste etc - anyone ideas please ?

Kari55 profile image
Kari55

Hi G2G2, great result! Does LDN only get prescribed by functional doctors or would endocrinologists prescribe it too? Do you know if LDN can lower white blood cells as thyroid drugs? My husband took Carbimazole and now on low dose of PTU but keeps getting neutropenia.

G2G2 profile image
G2G2 in reply to Kari55

lowdosenaltrexone.org/

cazzaleo profile image
cazzaleo in reply to Kari55

I was told this online chemist will prescribe LDN. You have a consultation with one of their Drs first:

dicksonchemist.co.uk/new/ab...

janeroar profile image
janeroar in reply to Kari55

Had no idea thyroid meds can lower white blood cells???

Kari55 profile image
Kari55 in reply to janeroar

Yes, they do. Usually when the dose is too high which we found out at last thanks to Elaine Moore.

G2G2 profile image
G2G2

An endo might. I don't know about LDN lowering WBC--sorry.

000ggg profile image
000ggg

Hi G2g2, thats great! How are you?

G2G2 profile image
G2G2

Thanks. I'm doing ok. The usual diabetic ups & downs that make me crazy. How are you feeling?

000ggg profile image
000ggg in reply to G2G2

I am ok but very exhausted and having trouble increasing t3, I also had some bouts of vomiting and runs which I hope were viruses and not the t3. One after a friend and I ate out at the only restaurant I can eat at here. I have injured my foot too ugh, just did an mri and it showed bursitis in the inter metatarsal in my third and second toes.

The worst is Sybil passed away 3 weeks ago yesterday from a saddle thrombosis. I feel terrible because I was sick that week with the food poisoning or whatever it was and feel I missed what was going on although I did take her to the dvm and they pulled some fluid. It was very traumatic and I’ve been in a shock, I miss her so much. Now ther is just my Quinnie and I’m still upset with him for jumpimg on her etc he misses her too

Diabetes has been the usual stuff maybe a bit better but some lows and an inset that was bleeding like crazy with a spike. I keep thinking of everything I would eat and do if I got a transplant. Didd the ldn help your type 1?

G2G2 profile image
G2G2

I'm so sorry about Sybil. Rips your heart to lose a beloved friend. Sweet baby:(

Hope it wasn't T3 I've not heard of it causing vomiting or diarrhea. I had food poisoning years ago. Spent a day throwing up & had chills. Really did feel poisoned. Never ate French onion soup again. Sorry about your foot.

I don't think LDN helped diabetes. Interesting of all the autoimmune diseases LDN reportedly helps, T1 isn't listed on what I've read. I sometimes fantasize of everything I'd eat also. Mostly, it would be the freedom to not to think about it!

000ggg profile image
000ggg in reply to G2G2

Thanks💕 I’m so devastated without her, I feel so guilty about all the mistakes I made. She was with me 17 years, and all my kitties from that time period are gone, she outlived them all and she was my last life line to them and it feels so lonelly terrible. I will never walk in my garden again with my beloved girlie Syb, she loved the garden so much. When I took Wiz for walks on a leash when he could no longer be on his own, she would follow around and walk with us.

I’m just on autopilot and will be for a long time. Missing her is a crushing pain, the only thing I can say is I’m glad she is not suffering with those awful diseases now. She became instantly paralyzed in her back legs by the clot and it was so frightening for her and painful although at first she didn't seem to be in a lot of pain so I hope not. Normally they give those cats huge doses of pain killers because the pain is so severe but because she had fluid around her lungs and she was in respiratory distress they said they were afraid to give her a painkiller because it could cause cardiac arrest. The doctor said she could not get a bp in any of her legs so she thought her heart is so weak that she is not even going to survive the night so we let her go. But I still question now if I did the right thing because she seemed much better after some oxygen, she was talking to us and she didn’t seem like she wanted to die. She was actually dragging herself around with her front legs at one point. So I don’t understand how she could do that if there was no blood pressure in her front legs. I guess I have to call our regular Dvm with some questions at some point.

It is very odd that since I have had type one I think I’ve had like 4 to 5 bouts of really bad vomiting and diarrhea. Whereas in the past I would only vomit every 10 or 15 years, I mean it was something that almost never happens for me. If it was food poisoning I’m afraid to go back to that restaurant because I do not want to go through that again of course but that is the only restaurant here that I know of that separates the dishes so we don’t get contaminated with gluten. I have to find some others I guess I mean a hardly ever eat out anyway because of the diabetes and my blood sugar goes crazy when I do usually.

I felt poisoned too until I finally vomited a few times, it was so awful, but first the runs soo bad on the toliet for one hour prolly😳😹 I had to cancel the whole day teaching that day. And I had just been sick thesame way 2-3weeks before that but mostly vomiting. The T 3 says, runs, headaches, and vomiting, stomach pain can be symptoms which I had so I was worried since I wasn’t sure what caused all of this.

When I read about the LDN I was thinking that could actually make type one worse because it said it increases the activity of the T cells I am going to ask my endo about this, I am going back in a month or so I think. If he thinks it’s OK maybe I will try to help my hashis.

I just realize there is no way to rest your foot really this is kind of a nightmare because I can’t even really do that much and it would make me feel better with the grief if I could get out and go for walks and things like that. I really was just ignoring it while I was taking care of Syb towards the end because I did not have the time to deal with it and finally I realized it’s not getting any better. I do not understand what is going on with all of these injuries and they just take so long to improve I guess it’s because I’m getting older. I started putting lidocaine on twice a day, and taking the natural anti-inflammatories I forgot the name of it now I have it in pill and gel form. The doctor wanted to do a steroid shot and have me take anti-inflammatories like aleve but my stomach was so bad from taking them for my knee that I just stop them totally now.

Yeah the freedom would be so amazing! I think I would be so overwhelmed by having the burden lifted from me that I would probably just stay in bed for a few weeks and eat whatever I wanted to LOL. But I would also just be more active and do whatever I felt like whenever I felt like doing it. I would travel again etc.

G2G2 profile image
G2G2

Know the pain you're going through about Sybil & am really sorry. Please, please don't beat yourself up about mistakes you *may* have made (& probably didn't). Understand blaming yourself because that's what we do. Syb lived a long, happy, loved life thanks to you. You did the right thing, another horrible, gut wrenching decision. I've questioned myself every time.

I rarely throw up. Antibiotics, which I avoid, do that to me. I didn't know about T3 causing vomiting. Was the dose increased to possibly cause it?

Hope your poor foot heals quickly. Steroids scare me because they can send BG high. Being able to take walks would help your sadness--sucks.

Please let me know what you find out about T1 & LDN.

Aaah, the freedom of no diabetes would be heaven. No one can possibly understand how much energy it takes, how it effects every single thing we do & can't do. It's an unbelievable, non-stop burden.

000ggg profile image
000ggg

Sorry I took so long to reply, I have been in a daze and I’m just trying to keep busy while I grieve. You're right, but I still feel terrible. I feel the worst about getting Quinn. It was a mistake because it caused her so much stress, I wish I had waited or adopted a better personality for her. I feel she would still be here with me otherwise😿

Yes, so true, No one on the outside can know the terrible burden of this, it is crippling for me, a constant battle with no break. I know what’s left of my life is passing me by because of this disease.

Antibiotics make me feel sick, give me a stomach ache, headache and runs but no vomiting Tg. I have been doing pt for my foot and it is actually a lot better, I thought it would never get better. I had to take aleve too though every few days and now my stomach is terrible.

I have been taking 2 or 3 t3 a day and it is ok, but I’m still exhausted etc. sleeping at 6 am or later, I’m on a crazy schedule. My tsh has dropped to .93 now, t4 is .98 and t3 was up to 155. I’m not sure what is going on, I go to the endo soon. If my tsh is good now why do I feel so ill? I’m eating one more meal most of the time now and I’ve gained about 10 lbs too. My basal is about 2 units increased so maybe that is why? I’m going to post about it, let me know what you think. My bg is crashing a lot too. A1 c was 5.4 and choleserol is down. But pth is higher and vit d lower.

How are you?

G2G2 profile image
G2G2

Quinn may have caused Syb stress, but not her demise from thrombosis. Please don't be so hard on yourself. Not your fault. Saving homeless Quinn was/is a good thing. Know your heart hurts:(

Definitely share your feelings about T1. I envy those who don't have the burden. I envy my former life before diabetes. Sadly true that we don't know what we've got until it's gone.

Read your post. Sorry that I can't offer any help. Wish I could. Too much T3 can cause fatigue, but you're taking such a small dose. Like the member who replied, I don't know what to make of total T3 numbers. Yes, it's up from where it was & TSH is down, but that could still mean you're undermedicated. Damn, even my idiot GP knows to test free T3 & free T4. Can you get a different endo? Would your GP treat hypothyroidism? I disliked the useless endos I've seen.

Glad your foot's better. Wish the rest of you felt better.

000ggg profile image
000ggg

No he didn’t cause it but he caused terrible stress that started the whole chain of events. I just wish I had let her be an only cat or got a different kitten. He is not a rescue, he is a pure bred , my only one. I love him but he was the wrong cat for Syb for sure. I’m sure she would still be here if I hadn't gotten another cat, or if I had adopted a little all black rescue kitten I saw in a pet supply shop, he would have been much calmer and not jumped on her etc. but I was not ready and I was worried he would remind me of my Wizard too much.

Yep Type 1 is just awful, at least I can tell you that😹 I just keep thinking about all the things I want to eat lately, it is so hard and I’m gaining weight, barely eating really. Food was one of the few things left I really love and its ruined now😿 the sheer amount of time we spend doing this is unbelievable, I just wish I could go back to my old life. With all my kits

My endo is doing the FT3, he said it is a very small measurement and that is why he doesn't do it, because it is difficult to be accurate. My father’s doc doesn't do it either and my gp didn't want to. Not sure what is up with that? My gp did pth and FT3 after an argument and then told me she would not treat it, she has no clue and I don’t go to her anymore. I go to endo and citi md, they are much better. But my next bw is in October with A1C. He is testing cortisol and acth again and a few other things and I’m going to start rx vit d and see if it helps, I hope so.

I will continue T3 15 mcg for now. I wonder if I should increase levo too? Another doc suggested a thyroid endo here but I’m worried he will tell my endo etc. I dont want to change because he is good for the type 1 and gets me everything I need, writes appeals etc. but maybe I can get a second opinion for the thyroid.

I went to another endo after my last hospital stay and she was terrible, the whole place was really terrible. She told me there is no diagnosis code for hashimotos and it is all just hypo, and she started questioning if I was type 1.

The nurse at my gp recommended her too😳 should a known better. They told me it was ok to be at 250, that was type 1 and had no clue how to help with my bg crashing when I was eating etc. They told me to just eat more carbs, bunch of wackos.

Thanks, I hope you're doing well with everything. I forgot to ask endo about ldn, I will ask next time or leave a message. If I go to the thyroid endo I can ask him. But it may take a whike ro get an appointment. I think he may be in the same group at the hospital which was terrible though, I hope not.

G2G2 profile image
G2G2

Absolutely staggering how utterly ignorant endos can be. Mouth is hanging open at any doctor saying 250 is fine! Yea, go eat more carbs. If there's no diagnosis code, Hashimoto's must not exist:) Hope she had a code for T1 after she was done questioning you. Did she think you're T2? Honestly, I doubt a thyroid endo would be helpful. They all learn the same crap in medical school. My insurance wouldn't allow me to see two different endos.

The first endo I saw for diabetes provided nothing. All he wanted to talk about was pumps. I was a month diagnosed & told him I had to research it. His answer was "all his patients had insulin pumps." First & last time I went to him. That doctor must get major kickbacks from the pump manufacturer. I taught myself about T1, which must happen to most.

What's a citi MD?

000ggg profile image
000ggg in reply to G2G2

Yep hard to believe. I don’t know what she thought honestly. She didn't come out and say that but I could tell from the questions she asked me about my symptoms leading up to my type 1 diagnosis that she was questioning it. Yet she already knew I was in dka at diagnosis and I had antibodies etc and I had just been close to it in the hospital a week before the appointment, so to me it was another sign of her ignorance that she would even ask about that etc.

It is a fear of mine because I was diagnosed late in life and most med professionals seem to be unaware that you can get type 1 at any age and that at least half of the 30,000 or so diagnosed each year in the US are over 30. I’m always scared some one is going to try to take me off insulin etc. 2 hours my bg shoots up and I’m in the hospital.

I think my ins will pay to see someone else who specializes etc because they paid for me to see wacko endo, lol. I’m going to research it more and decide.

That is odd wanting you to go on a pump right away, they usually want you to learn mdi for a while at least. My endo asked after 2-3 months too maybe, I can’t remember now but I was scared of overdose etc. He didn't push it. When I did switch, it was so much better for me and I wish I had done it sooner. T slim is great for me and I feel a lot safer. I hope if the bcg vaccine can help us in time maybe I can get off it though, it is a lot of work, but for the lows especially and highs too it is much better.

Yep we all learn the most ourselves prolly. I had a wierd convo with cde but for the most part they are good now.

Citi MD is one of those dr clinics that you can walk into whenever you want. I never go to my supposed GP anymore.

Have you ever taken rx vit d ergocalciferol? I’m scared to take it now after reading about potential overdose etc.

G2G2 profile image
G2G2

Doctors prescribe ergocalciferol because it's available in higher doses than D3. I've not taken ergocalciferol. Understand your caution.

Don't worry about a doctor taking away your insulin. You've got antibodies unfortunately, & a doctor could also test your C-peptide to prove you're T1. Plus, more T2's use insulin, if they've got progressive doctors.

The first endo was a pumpaholic:) As soon as I said I'd research it, a look of disbelief & disgust flashed on his face. No way I'd go to anyone who was clearly annoyed at a patient wanting to research. Yea, I'm a non-compliant patient. I refuse most of what my GP recommends. He's learned to stop pushing statins after years of me telling him I'd never take them.

Dr. Faustman is the only researcher I trust. Here's hoping!

000ggg profile image
000ggg

I havent given up hope yet, after 6 years. I think I will get the courage to try the vit d, keeping fingers crossed.

I guess it is not a rational fear but I have had so many crazy things happen I will never completely trust the medical knowledge of anyone again. Yes c peptide will do it but I think antibodies in type 1 lower over many years.. and it can make a huge difference to your treatment options etc. even if you dont end up in dka etc.

Many type 2 should go on it but I don’t blame them for fearing it or not wanting to etc.

That pumpaholic endo sounds like a loser, that is good you switched. I’m the same, if someone won’t answer my questions and let me research etc. My endo was pushing statins too, I tried one which a cardiologist rx and had so much pain I stopped it after a week. Then he gave up because my ratio etc is good. Now my ldl has lowered I think from treating the thyroid and from a lower a1c too.

I had so much pain from the one I tried I had to take aleve and I also felt so dopey I couldn't drive. I told him I’m not taking them with that kind of pain etc. he did rx one more that was supposed to be less likely to cause side effects, but I never tried it because it was too expensive.

G2G2 profile image
G2G2

Could you take higher doses of D3 without an Rx so you could control any possible effects?

T2's should really be more afraid of T2 drugs, but I understand.

Statins are one of the worst prescription drugs causing horrific damage. Glad you only took it for a week. Statins provide nothing for women who've not had a heart attack either. The first Rx I was given, I tossed in the trash. Then, told the GP that wouldn't take them & cited everything that was wrong with statins.

000ggg profile image
000ggg in reply to G2G2

Good for you for throwing the statins out LOL. Yeah it’s a good thing I had such a bad reaction immediately and stopped it otherwise I could’ve had real damage. One of my father’s friends took them for a long time and she had terrible nerve damage from them. Now she is on steroids all the time.

Yeah I think if I was t2 I would avoid insulin but you’re right the other meds are much worse except for metformin.

I started taking the 50,000 IU and so far it’s OK. I think I actually might be feeling a little better from it although I’m still pretty exhausted most of the time. But it has only been one week. I don’t think it’s going to work if I take over-the-counter vitamin D because that is what I have been doing and my vitamin D just kept dropping. I think I really do need a higher dose rx. Also my doctor said the over-the-counter vitamin D is not regulated so you never really know what you’re getting with it. I read about people taking high doses vitamin D over-the-counter who were overdosed because it was much higher than what the packaging said.

The D2 one pill is easier because it is only once per week, I was getting sick of taking the drops every day, and sometimes I couldn’t remember if I took them or not LOL. Same thing with the levo & T3, I have to take three pills of T3 and one levo every day and it is such a pain in the butt. I wish they had a trans dermal instead. I have them all in the pill container with each day along with my lansoprazole but it is still such a pain with all the other things that I have to do my eyedrops brushing my teeth my eye wash etc. it seems like it takes hours for me to get ready to go to sleep. And then I have to brush Quinn’s teeth too and get him to go to sleep😳😹

G2G2 profile image
G2G2

I keep hoping for a transdermal patch. Would certainly make life simpler--sigh. Of course, when this is ready for market, it will only be levo. Those of us on NDT will never get a patch.

Glad you're not having any issues with the D2 pill. Doctors say the same thing about NDT. Total bs. Synthroid has been taken to court for not having what it states in the pills. Doctors believe if it doesn't come from big Pharma, it's not good. Meanwhile, big Pharma has constant class action suits & pulls drugs from the shelves that kill people, yet physicians trust the pharm reps they see. It's where they get drug education, sad & tragic. That & big conferences with perks put on by pharm companies, not to mention cash. The world should sue statin manufacturers.

Metformin appears to be the safest choice. It causes B12 & folic acid deficiency. This deficiency can be & is mistaken for MS, dementia & other neurological diseases. Have to question how many doctors test B12 & folate in their metformin patients.

Wow, Quinn lets you brush his teeth!

G2G2 profile image
G2G2

PS--Are you taking Vitamin K-2?

000ggg profile image
000ggg

Sorry I took so long to reply, for some reason I dont get a notice when you reply. Yes he lets me brush his teeth! Sometimes he gets fed up and pushes my hand away with his paws etc. lol. But I persist. He likes to eat the toothpaste so I let him lick that first. I started when he was 5- 6 months old. I don't want him to get dental disease and need dentals etc which aren't safe due to sedation.

I know what you mean about the docs etc of course etc. still the bad reactions to high does vit D I found were from huge doses rx like 50,000 per day or 180,000 iu injection etc. or from otc high doses which were much higher than what the package stated, so if it’s not regulated you never know for sure what it is, that doesn't mean there can’t be errors in rx too, ut its less likely. I think there was a study dine that shiwed nine of the otc probiotics had any significant levels while thise made for cats and dogs etc had the stated levels. Very odd lol.

Yeah you're right they will prolly never do it for ndt or t3😿

I have the worst sore throat and reflux for the second time in 2-3 weeks. So awful, my keft throat is rW and hurts to swallow etc and I feel totally dehydrated no matter how much I drink. I hope it is better soon. I dont want to take tylenol because my dexcom may be worse. I guess I should get the G6. I had a terrible back spasm and had to take an aleve and the reflux was severe only a few hours later. I hate this. I never get a bad sore throat normally in the past from it. Nothing helps it.

G2G2 profile image
G2G2

I should have started earlier with kitty teeth brushing. Quinn's a good boy, Weird you didn't get a notice of my reply.

OMG, 50,000-180,000 D2 doses! Interesting about pet probiotics. My acupuncturist vet warned me about ever using a new dog or cat med that hasn't been available for at least 5 years. She said the trials use very few subjects, often only 12-20 test subjects. When you consider the differences in breed, weight, age, health status & gender, you'd assume there were many hundreds. Nope. Our animals end up as the guinea pigs. If enough animals die, then they pull it from the market. Nice :(

Sorry about your throat & the reflux. Awful. Do you have a fever? Could it be from D2?Wonder if you could get a painkiller in a suppository? I vomited from aspirin as a kid, so my mother had to give me aspirin suppositories to lower fever, etc. There weren't things like Tylenol then. The plus of medicine in suppository form is that they work super fast, Also, there's no coloring or fillers.

Hope you feel better soon.

000ggg profile image
000ggg in reply to G2G2

Odd, again no notice of your reply but I came to check. I think it may be because you have to click reply when you reply

A suppository sounds good for that. I have never had one maybe, except in icu maybe. I can't take aspirin and find if a med upsets my stomach it does that whatever route I take it, like voltaren gel gave me reflux etc! I can take tylenol so I will just have to do that, it is not as good as aleve but better than nothing.

I have no fever so this has to be reflux and I think it is the d2 high dose so I’m going to stop it. I’m getting a bad headache, worse muscle spasm and terrible fatigue too. Odd that I woke up with bad reflux the first day before I took it, but I’m sure it made it a gazillion times worse. And now again the same thing after only one aleve and it was the day after the d2 so it has to be making it worse. As bad as my reflux is, I have never had a severe sore throat from it like this. Oh well. I will stop it and wait a few weeks and go back to my drops and start to go in the sun more I guess.

I may go to citi md and ask for a blood test to see if it is hypercalcimia maybe. I feel a bit better today but only after drinking gallons of water, a bland soft diet, not eating before I slept, cough drops, ice cubes, and Tylenol. I was up a million times peeing etc without high bg, but I ususally am because I drink water alot.

It seemed to get a bit worse after I got up today which is weird, but not nearly as bad as yesterday which was horrible. My bg has spiked now too, prolly cause I got up earlier and my whole schedule is messed up as well as not feeling well etc. I am cutting out my green tea for now too which is torture. I can barely function without it.

Yep that is true about our furbabies 😿, don't ever use convenia, did I tell you about it? Angie had a severe anemic reaction. It is very dangerous.

Yep, the earlier you start the better. Angie was my only other baby whose teeth I brushed because she loved the toothpaste. Hope you are well😊

G2G2 profile image
G2G2 in reply to 000ggg

I thought I hit reply, but guess not. Glad you figured it out. Definitely did reply this time, so we'll see.

What an ordeal. So sorry! Good you can handle Tylenol, even though it's not as good. How weird the gel caused acid reflex. Do you know why? Is there a particular ingredient?

Being sick sure does raise BG. Getting little sleep sends mine high. I think it causes an adrenaline surge because I get that tired/wired feeling. Wish I was someone who could nap. Once I'm up, I'm up.

You didn't tell me about Covenia & poor Angie, but I don't use it for mine. Bet my regular vet really dislikes me from questioning any med & refusing most. Damn, they make money, lots of money on every pill, injection & topical they sell. Worse than human doctors. Vets never explain about any side effects either. They hand out steroids like candy.

Hope tomorrow brings more relief.

000ggg profile image
000ggg in reply to G2G2

This time I did get a reply and it’s my fault I took so long, having some hectic days here with too much to do and today I had a bad low with straight down after I ate and leveled at 46. It took 20g juice and glucose tab to stop and no spike. I did too much in the heat after eating because someone came to plant stuff and I had prebolused cause I woke up at 144 and then had basal raised too, ugh. Hate this shit. 😖

It is weird about the gel, I’m not sure how it does but it really does over time have the same effects for me. All the anti inflammatory drugs are very bad for gerd, too bad because they help my pain a lot. I don’t know what specifically does it or how but I remember reading about it before.

Yep any change of schedule etc lack of sleep, illness can cause either highs or lows for me too.

My reflux is getting better but I’m still being careful and I wont take any D for a week or two prolly. I was supposed to go to the gastro doc today but I had to cancel due to my low. I just cant do too many things at once. I was able to go out later to get a spay neuter set up for Merlin, one of my outdoor guys.

That is good you are so careful about the drugs etc and I’m so glad to hear you know not to use convenia. Sad that a dvm would feel that way. That is too bad you can’t nap, sometimes I can. Especially at night after dinner in fromt of tv😹 My problem is falling asleep... I got up early for me 😹so I’m off to try to sleep soon and change my schedule. I have to get Merlin there at 12 pm next week. It is hot/ humid here, wondering if I should sleep downstairs in ac, ugh.

G2G2 profile image
G2G2

We had the same day! I woke to 146. Rare for me to have overnight highs. I take the same basal dose I've used for about a year. I've had overnight lows, so I eat cheese before bed. For some unknown reason, cheese raises my BG much more than it should. Really strange. The rest of the day was the also the same as yours. I had a lot to do & tanked. How I hate that hypo feeling. Sucks.

I don't have a problem falling asleep, but am not able to sleep straight through any more without getting up. Sometimes, I start intense dreaming right after falling asleep & the dream wakes me. Then it's hard to go back to sleep.

Glad the reflux is better. Good idea to hold off on D2 for a bit.

Merlin, great name.

Hot as hell here as well with disgusting humidity. Been a miserable summer. When do you start teaching?

000ggg profile image
000ggg in reply to G2G2

No notice this time. That is weird we both had a similar day😹 yep bad lows are very scary for me, I just get that sinking feeling when I realize it is happening again.

Mine was 107 or so at first but then goes up as I do stuff if I dont eat. I really need to eat right away if it is not low. Maybe it wasn’t really that high considering the low. But 144 is not that high for me to wake up, I’ve had much worse. Such a pain.

I think cheese raises me too, but sometimes not, I have to bolus for everything most of the time.

That is good you fall asleep easily but not good to wake up😳 have you ever done a sleep study? When I first started having insomnia I was waking up every hour and could not get into a deep sleep. Now I’m up peeing constantly while I sleep and drinking water, testing bg etc.

I have that problem if I sleep before 2 am. I just wake up and stay up till 5 or so. Also if I do feel tired at 2-3am by the time I do what I need to, I start feeling very hungry and have to eat. It happened at 4 am or so again. It is rare for me to sleep without a snack.

Yep this heat sucks😳 I just got the arctic air thing. It’s not too bad.

Quinn was very frightened by something today. I was in a downstairs bathroom and I heard a loud crash. I looked around but nothing was obviously knocked over etc. I called him but he did not come. I went upstairs for a bit, but he did not follow me. I went down and found him in the garage hiding behind a shelf, he came out and his tail was puffed up, he was scared to come in the house etc. I had to carry him in and he is still scared even now. he has been scared all day and he is staying upstairs now. He was looking out the sliding door as if he was nervous. I couldn't find anything out of place. I went out at some point and noticed the top only of our driveway was wet. I have no clue what caused it. We were going to celebrate his b day finally today but he is too scared.

G2G2 profile image
G2G2 in reply to 000ggg

I'll be careful to hit reply to you. Sorry. I've had bona fide anxiety attacks with lows. I'm not a anxious person. Also have had feelings of panic when really low. Yea, it's awful for both of us & all the other T1's.

Never had a sleep study. Have you? Wonder what people are told to relieve sleep problems? Sounds like your body's trained to go to sleep around 5 AM. I do my best to do nothing hours before bed or I'll be up even later. Problem is night is when I have more energy, which sounds like you. Owls unite:)

Oh, poor Quinn. What in the world could the trauma have been:( Hope he's back to himself now. Happy birthday to the darling muffin.

How's the reflux?

000ggg profile image
000ggg in reply to G2G2

So sorry you have the panic attacks. It is so terrifying to feel the low coming on. I am trying to do some meditation type things ro calm myself now as I wait for bg to come up. And to try nit to over treat it. I have struggled with anxiety most of my life and have been on meds on and off but this makes it 50 mil times worse, it is constant stress and no one tells you what you are going to be dealing with when you are diagnosed. I hope someone figures out something better soon for us.

No I have never done one, but it has been recommended due to possible sleep apnea and my insomnia. I never did it because I’m afraid I will not fall alseep at a sleep center location etc.

yep, I have always felt more energtic at night and i have been a night owl too for years, it is hard to get out of that. 😹 although I want to because it has gone to an extreme now. but the diabetes makes it maybe impossible now because my bg either spikes or drops when I sleep at a normal time. It drops in the afternoon when I sleep too. But when I was a child I would sleep at a normal time, just say I’m going to sleep and fall right asleep! But even when I woke after normal sleep then I hated the morning and always felt crabby and tired then. Very odd.

I was talking to friend 2-3 years ago and she said there is a first sleep, around 9-2 am the people would wake up and read and talk during the night until dawn and then go back to sleep again for a second sleep. so maybe it is a normal pattern for many people, or it used to be a long time ago, she read about it in a book I think but I can’t remember which one, or why it would have beem common at that time I think it was in the 18-19th centuries and earlier maybe.

I think they tell you to get up early, exercise before 5 pm and dont drink caffeine after 3 pm etc. try melatonin or sleep aids etc. i wa taking melatonin and theanine for a while but now I’m worried it makes my bg crash or spike

I wish he could tell me what scared him, he is still sleeping in my closet at night now so it was pretty bad whatver it was. 😳

G2G2 profile image
G2G2 in reply to 000ggg

Informative article about Vit D by a leading researcherarticles.mercola.com/sites/...?. Mega doses are not recommended & the doctor explains why. She also goes into the importance of magnesium to mobilize D3. Hope you find this helpful.

000ggg profile image
000ggg in reply to G2G2

Thanks 😊 I will read this. I had a really terrible day yesterday. I woke up at 9:30 to High bg of 230 or so that did not drop with a pump correction and then high ketones 3.8., terrible runs, nausea etc. I thought I would need to go to er but somehow I managed to get it under control. I felt so sick and confused I’m not sure how I did all of this. I changed my insulin, inset, cartridge and stacked insulin injections all day. I raised basal to 160% for hours. Bg is still running high for me at 150 or so after I ate( it did drop to normal and was crashinga bit before I ate dinner) and overnight prolly a rebound and now my shoulder blade is in a terrible spasm since last night. I had to take painkillers and even more aleve because they didn't help. I think the cause was a combo of bad insulin and or absorbtion, dehydration from the heat and a possible stomach bug. Be careful in the heat because dehydration alone can cause big problems for us. I think I overdid things doing some gardening and stuff at night on the weekend which contributed to all of this.

G2G2 profile image
G2G2 in reply to 000ggg

Ugh, 230--sorry. Do you think that's what woke you? I've only a few overnight highs like that. Highs don't cause nausea or runs for me. My head pounds, thirst (the first symptom), & I become cranky & easily irritated. Lows also cause me to be cranky & argumentative. We can't win. The times my BG is perfect, I feel great. Too bad that's not frequent.

Awful about your shoulder blade:( Hope that's better soon. Pain causes my BG to skyrocket. Must be the inflammation itself.

I'll be careful to stay hydrated--thanks.

I've read the same thing about Ist & 2nd sleep. What I read traced this to days before electricity when people went to sleep when it was dark to save candles &/or gas for lighting. When they got up in the middle of the night, they often had sex.

T1 has ruined my sleep cycle. Like you, I've never been a morning person, but it's gotten worse chasing highs & lows at night. Melatonin did nothing for me. It didn't effect BG. I don't drink anything with caffeine, except for matcha. I don't get that jittery caffeine feeling from that. The room has to be cold, even in the winter.

I've also thought I wouldn't be able to go to sleep in a sleep clinic setting.

Oh no, poor Quinn. Hope he gets over it.

000ggg profile image
000ggg in reply to G2G2

It was not a regular high because I also had high ketones which means you are going into dka usually. I was in dka at diagnosis in the icu with serious complications and lucky I survived it all. And two years ago I was close again and hospitalized to flush out the ketones. The ketones cause severe nausea / vomiting, runs and more. So the runs could have been from the ketones and getting close to dka or from a bug or both. I’m guessing it was not a bug though or not just a bug because i had severe diarrhea and vomiting twice a while back with low bg and no ketones. I have never felt so nauseous in my life as my first dka and last time was bad too. I took zofran last time and I was close to taking it this time but as I got the bg under control etc the ketones started reducing and the nausea etc got better. The hydration is key because that alone can cause dka i the heat etc. and runs, vomiting/ nausea further dehydrate you

Regular highs make me feel ill too, but not ususally the ketones type nausea and runs etc. another thin that can cause bad runs for me is a migraine but not usually this bad. I feel very ill and feel a terrible pressure in my body and swelling etc and my feet hands tingle etc. feels like I could have a stroke etc. I get crabby for lows too and very anxious 😳

I never really feel good even with good bg, I usually feel weak and hungry alot of the time but ill take it over high etc.

Yep I think it woke me up thank goodness because a little longer and I would have been in the er I’m sure. My bg went to 299 this time and sat at 270 for ages. Last time I woke up, bg was 100 and an hour later I woke up and it was 350 going up! With high ketones and severe nausea.

That is weird that they wanted to save gas etc but woke up in the dark😹 im confused. The sex would just wake me up and make me eat😹 I remember her saying some of that too.

I never knkw what is going on with my bg, sometimes I am very sick and it is normal etc. maybe it is the pain and stress etc sometimes. Changing my schedule is bad but I go through cycles of highs and lows often unexplained.

It has ruined what was left of mine too☹️

I drink green tea, i tried matcha but it was too powdery at the bottom.

Sleeping in a cold room with a window open if possible is supposed to be good for osteoporosis and colder is better overall. I use wax earplugs and a dry eye mask too.

I think he will be ok eventually. He is a very skitish little guy and has a good memory though. Tonight I have to trap Merlin, one of my outdoor guys for a neuter etc. It just started raining though, I hope it stops by 2 am when he usually shows up. My shoulder is a bit better but someone will help me lift the trap etc.

G2G2 profile image
G2G2 in reply to 000ggg

I've never checked for ketones. I don't think they tested ketones when I was admitted to ICU because I was unconscious & too dehydrated to urinate. They had all the info they needed from my 866 BG! Safe assumption ketones were sky high;) Blows me away thinking how I was close to death, Know well the horrors of DKA. I was nauseous & vomiting for days, couldn't move, peeing constantly, every part of my body hurt, & so thirsty that no amount of water quenched it. I thought I had a stomach flu.

Terrible you feel that sick from highs. Sucks. I don't feel highs are intensely as lows. I also can't explain highs. I eat pretty much the same things. Using MDI, I can't fault faulty absorption. Well, less of a chance.

True about saving lighting only to use it hours later. It's natural to go to sleep when it's dark which is when melatonin kicks in, especially when people led more physically demanding lives. I got yellow plastic glasses to block blue light at night. It helps.

Interesting that sleeping in a cold room helps osteoporosis. I've liked cold sleeping with fresh air since I was a kid. I shared a room with my sister. I'd open the window in the winter & she'd close it & I'd open it again. Our apt didn't have central AC, just window units. Was hell in the summer & also too warm in the winter for me.

Yea, matcha doesn't totally dissolve. I add water when there's about 1/4 left. Too expensive to toss out.

Have you used Rescue Remedy for your kitties? If Quinn isn't cooperative with taking drops, you can rub it on his ears & feet.

Good luck with Merlin. It's a swamp here from all the rain.

000ggg profile image
000ggg in reply to G2G2

I remember you telling me that, soo horrific you went through that, I’m glad you survived it all. Why didn't your doc put you in hospital? Mine didnt eitehr even with diagnosis and clear test of dka etc. I can hardly believe how high some people’s bg was when this happened. I feel like I’m going to have a stroke even without dka at above 200 or so, sometimes lower. WhenI was going to er etc I was gasping air, seeing flashing lights and could barely think. I remember them asking me questions and I though they were crazy, then someone yelled its dka and they rushed me back right away. The test they do for official dak is the anion gap and the co2.

I have ptsd from what happened to me there, wish I had been unconscuois so I didnt remember any of it🙀😸

As my fisrt dka was happening it was a slower build up. I was losing fat/ weight, becoming dehydrated, eating and drinking everything in sight, especially sweet stuff. I had severe 2 yeast infections and more and numerous doc visits, severe itching etc. Then trouble breathing, visual disturbances, sores in my mouth and more, constipation. I tested urine ketones and they were very high. i went for a physical etc and had all dka test positive etc. bg was 279 then, with very high ketones, proteinand sugar in urine and co2 low already, that was when the severe nausea started. 1.5days later in icu, with bg 389 and already in severe dka, with ph of 1.2. My bp ws high too etc.

That is what scares me a lot, I go very quickly to dka and I build up ketones rapidly and I don't need super high bg for it to happen. It could be partly the pump but I think I’m one of those people who is dka prone and affected by dehydration too. One woman in Israel was saying she kept going into dka and no one could figure out why. I’m guessing the climate and dehydration was a factor maybe.

I have precison xtra ketone blood meter and I feel much safer with it, I can monitor what is going on and see if I need ro go to er. Even though you are on mdi, I would get one because you could still go into it feom illness, stress and dehydration etc.

I have this glasses too and they help my dry eye reading etc. but they hurt to wear over my glasses. I dint know why I wake up at night, it is a mystery😹. I got up early for 2 days now, trapped and took Merlin to clinic and he is home recovering now, he is meowing, yeowling and hissing a bit. He is in the drop trap cage for now. They told me to keep hi a few days but he is ripping the wee pads and little box to shreds so I may have to release him earlier.

That is funny about you and your sister😹 I went on a trip with a friend to two concerts in Rhode Island and she has to have the window open in the dead of winter I was freezing so we closed it though and then she was eating ice cubes LOL I could not sleep.

I tried rescue remedy with Quinn to stop him jumping on Syb however it does not seem to really work although it’s a calm him of it but because he has had a lot of diarrhea on and off I’m afraid to give him anything new orally . I have finally cured it with the homemade diet and he still eats some fussie cat too.

G2G2 profile image
G2G2

Rescue Remedy wouldn't help with Quinn's behavior towards Syb. It's for traumatic situations & stress. You can rub RR in his ears or the outside tips of his ears & on his foot pads.

Not my doctor's fault because I didn't go to him. Mistakenly thought it was a stomach flu & I'd get over it. Antibiotics make me sick & figured that's what he'd prescribe. I was vomiting enough without antibiotics. Like you, I lost a ton of weight. Was eating a lot before the vomiting started. Yep, was craving sweets & drank grape juice non-stop. Funny thing was I never drank juice before.

I want to slap your doctor. That's malpractice! What an idiot! You told me about that & I continue to shake my head in disgust.

All I remember was being asked questions in the ER, barely able to answer. Then, passed out. Came to in ICU with an IV & monitors. I didn't know what was going on or why I was there & I didn't even care. Think I told you that was hallucinating from sleep deprivation. BG was tested every 20-30 min & the blasted blood pressure cuff was taking BP every 15 min also. Impossible to sleep.

How did you know to check ketones before you were diagnosed? I didn't know what ketones were before T1. Now, we hear the word frequently thanks to ketogenic diets.

Frightening how quickly you go into DKA. Horrible. Wishing hard I never have that experience again. Good you have a ketone meter. Used to read on Tu Diabetes about members being DKA repeatedly. Heart would break for them. I felt like I was dying & I was.

Your friend wins the prize eating ice cubes:)

Poor Merlin being so upset. I've done feral trap & release. Immediately released males. Such a nothing operation for them.

'

000ggg profile image
000ggg

Sorry I took so long to reply.

I think he is recovering now because 2 nights ago he started sleeping on the bed again or his rug on the ground and he was super cuddly for him with me when we woke up. I used to put drops of it on his thunder coat patch and it did seem to calm him though. I know it is natural but I still worry about putting it on him etc. because he could still have a reaction to it with all his runs etc. I should have tried some sprayed or phermones for Merlin.

Yep wish I had sued all of them and the hospital☹️ He was not the only one who failed to do what should have been done, I saw numerous doctors with clear signs of D and no one diagnosed it until him. I had started to become concerned with the itching and yeast infections when I read a woman online who had D who said she had continual yi. I asked my friend I was emailing who also suffered from vulvadynia if I could have D and she said no. 😳

That is terrible you had no clue you had diabetes. I don’t know why I did the ketone test. My urine was very bubbly and I was peeing like crazy so I guess I decided to try it and see what happened. I didnt realky knkw what it was then😹

By then I had had a visual event where I could not see the road signs, went to the eye doc and he also failed to diagnose, but I went to costco to get glasses and an optometrist told me they saw frequent changes in vision from blood sugar.

I went to my eye doc who was treating me for dry eye and ocular rosacea(my eyes were a major D warning in more ways than one), in the city 1-2 weeks before dka and he also failed to diagnose D but gave me rx for sjorgens test which I never did because I was in dka 5 days later etc. I had sores in my mouth and it was painful to eat, swallow etc. I was already so dehydrated already then. I showed the ketone test to the nurse at my physical and she kept asking if I was diabetic and I said I dont know. Their test was also sky high. It is all very twilight zone when I think of it all now.

I often wonder about that, ketosis from diet in someone non D is not dangerous but for us I dont think it is ever a good idea. I am scared by how fast it happens and that I dont really know why it is happening. It makes living very difficult. It really scares me because of what I went through then too.

I kept Merlin for 4 days because they said keep him a few days, although it isn't like a spay, it is still a lot for them to endure with the sedation etc. and he also had 3 vaccinations, testing neg for felv / fiv, flea treatment. I gave him his first worming in food before releasing. He had some runs after that so I gave him sacchoramyces boulardi too. I was hoping maybe he could be tamed because he was talking a lot to me but he was not happy in the cage and I was scared to let him out in case he went nuts etc.

He hissed and swatted at me when he was in the carrier and I was removing the locking parts that attach to the cage. Since he didn't do that when I first captured him I think it was prolly fear from them giving him sedation through the cage. He was so happy and he ran out into the woods but he came back at 12 am for a munch so he does not hate me. I always feel sad to release them.

When Syb first passed my father said he he didn't want another cat, then 2-3 weeks later he said he did and I said I’m not ready and I have to get a cat who gets along with Quinn, but now when I mentioned taming Merlin etc he said no and said he never said that. So upset because I do want a companion for Quinn at some point and told him I will be getting one eventually. I don’t want it to be a stressful thing etc. I think his memory is failing more now.

I have been so busy because we are having new floors done soon and there is so much to do. My back etc has been terrible and I got some voltaren gel again from doc. I have been getting up earlier but had another crash at 2 am to 48 after my snack. Drank 7 grams and one gt and went to 160 while I slept which took 2 corrections to come down. So exhausting. I hope you are well.

I’m not sure but I think the vit k2 may have been partly causing the severe reflux now. I stopped that and I’m a bit better knock on wood, even though I had to take aleve 2 x for a bad back spasm.

G2G2 profile image
G2G2 in reply to 000ggg

So glad Quinn is better! Rescue Remedy on a thunder coat wouldn't have any effect because it has to be absorbed by the body (not like essential oil), so it must have been the thunder coat itself that calmed him. I've never heard of an animal having an allergic reaction to RR, if you ever need to try it for Quinn, Using it transdermal on his ears or paws wouldn't affect his tummy, though it probably works better orally. When using RR for mine, I use drops in the mouth & also put on ears & paws,

You sure had a case to sue. What a clusterf**** of malpractice! Unbelievable ignorance of a common disease with clear symptoms, Sorry you had to suffer for no reason. Yep, a twilight zone nightmare:( I forgot that my vision also changed. I could all of a sudden read tiny print, but my distance vision was kaput. I've always been far-sighted. Really high BG causes the shape of the lens to change. Took almost a week after DKA for my vision to return where it was before.

Being in ketosis from a ketogenic diet is a very different biochemical process from DKA. Most everyone, or everyone, has mild ketones in the morning simply from not eating for 7- 8 hours. Dietary ketosis from using ketones (burning stored fat) for energy instead of glucose doesn't cause or contribute to DKA.

Completely understand your fear of ketones. Frightening how quickly you can go into DKA, Not that you probably do anything about it, but would be nice to know why.

Exciting to soon have new floors. What are you getting? Sorry about your back. Hope voltaren helps. Ugh, another crash. Sure is exhausting.

Merlin loves you for feeding & taking care of him, He knows. I can picture how freaked he was from surgery & being confined.

000ggg profile image
000ggg

Yeah, I iust worry about it though because he is very sensitive.

Yep, wish I had.

That happened to me too, at that point I only needed 1.25 reading glasses then all of a sudden my vision was getting much better and I didn’t seem to need it but I was using pinhole glasses and I thought that was why. But it was my high blood sugar when I was diagnosed my A-1 C was 13%! Then I had the incident on the highway.

When I went into the hospital I was seeing flashing lights and I was barely coherent then when they put me on insulin at some point My vision went totally blurry I could not see or read or see peoples faces, it was terrifying. Basically I think I was just about legally blind at that point. I was not able to drive or really do anything for about four months after that.

It took six months to normalize at all and it has never gone back to what my vision was before all of this happened so I had some type of permanent damage to my eyes during DKA. I went through three different prescriptions in six-months as my eyes improved but I now need glasses for any close vision mid range vision and for far vision. Far I can see without the glasses but it’s much better with them.

No one has been able to give me any explanation of what happens one of my eye doctor said he has never seen anybody in DKA that lost both close and far focus. Usually you lose the for focus.

You know I used to think that too about ketones etc, I understand all of that however two years ago when I went into almost DKA, much closer that time, and I was in the hospital at that time I was not able to eat because my blood sugar was crashing all of the time. I was terrified to eat and I was eating less and less carbs and I believe that played a role so no I do not think a ketosis is a good idea for a type one diabetic. Not for me anyway. Eating too low carb is very unhealthy for me and it makes me feel like I crap. I mean I feel like other crap with this disease anyway but it’s even worse when I am too low-carb and my blood sugar is crashing all of the time. At least I have some improvement with what I am doing now although it’s still not much of a life.

Yeah I just wish I knew if there was someway I could prevent this because there is no way to live your life with this continual fear and physical distress that I’m going to end up in the hospital at any time when I wake up or whatever I mean it’s a constant stress.

We are doing the whole upstairs of the house which had mostly carpets they are doing it right now and I had to get up at like 7 AM or something and my blood sugar has been terrible first it was 180 then I did a prebolus it corrected and it crashed badly now it is back to 150 this is just going to be a terrible day. I just cannot live anywhere near of a normal life anymore. any type of stress changes in my schedule lack of sleep and my blood sugar just goes crazy for hours and it’s dangerous. I freaking hate it! What kind of life is this? A crappy one.

I was up helping my father get all of the other things out of the room and doing 50 million things that I had to do, and then all of a sudden I go to my bedroom thinking I’m gonna get to sleep at like 3 to 4 AM and the light in my ceiling is falling off of the ceiling and there’s a burning smell and the switch plate is hot! I have called an electrician who is going to come tomorrow morning at 7:30 AM even though I try to explain to these people I cannot get up early it’s like they just don’t give a shit.

Well at least we will have a beautiful floor after this and a lot of papers and crap that should’ve been thrown out years ago are getting thrown out or given away etc. Very stressful though all of it. We are getting an engineered wood floor it is on the upper floors and they said you could do the solid hardwood however I had already put in to wood floors upstairs about 15 years ago myself. One was the Armstrong wood tile and the other was an engineered wood, and a solid wood floor would’ve been much higher than them so I decided forget that plus it was a lot more expensive.

My elbow was so painful today from everything I did yesterday and all of my injuries that I put the Volterra and gel on it and it seems to have helped a lot more than I remember it helping me in the past. So now I have to see how it’s going to affect my stomach. Just cannot stand being in pain like this all the time anymore and not able to do all the things that I used to be able to do. The floor is a little bit less exciting because we may end up having to move to depending on what happens politically here so I’m not going to even really get to enjoy a lot of the stuff that we’re doing. I don’t know I hope things will take a turn for the better and we can stay. Otherwise we have to go back to Canada.

Yeah I know he loves me I just feel somehow like I’m failing them because I can’t take them all inside and tame them etc. and keep them safe.

he has come back every night except the night before last but last night he came back at 9 PM and Fred and cinnamon, two other guys I tnrd are starting to come around at that time just before merlin, they love each other and they run around playing together so cute.

I hope your blood sugar is better than mine LOL 😹😳💕

G2G2 profile image
G2G2 in reply to 000ggg

I've wanted to try pinhole glasses. Have you used them more recently?

Have no idea what my A1c was when diagnosed. Doubt it was checked because there wouldn't have been much point to it. Can only imagine A1c with 866 BG! Had to have been crazy for days & also super high when my vision changed the weeks before DKA. When they had me walking down the hospital hall, I couldn't see 10' ahead. All was a blur. I was so scared.

Yea, a ketogenic diet wouldn't be good for you. Eating very low carb also isn't good for hypothyroid. I've known T1's who do ketogenic without problems. Of course, they have to dial down insulin (a plus). Issue I would have is eating enough fat. Ketogenic's great for epilepsy, brain cancer & other brain conditions.

I wonder if you're a high glycinator. I was told by a CDE I was probably a low glycinator because I had a bad month of highs that wasn't reflected on my A1c. I don't know how you could find this out, or if anything can be done about it. But, hopefully there is something you can look into.

Horrendous to live in constant fear. No way to live indeed! Am so sorry. No one could possibly understand the unremitting stress of T1, made worse by what you deal with. Your poor elbow.

Oh, you're Canadian. From where? A visa? Horrific political situation, but even the crazed president isn't going to toss Canadians out. You'll get to enjoy your beautiful new floors for years.

Know you feel about the ferals. I feel badly with the ones I've released, too. They were pretty wild & not much potential for taming. Sweet that Merlin has friends. Love seeing animals joyfully playing,

Wishing you good BG & rest, despite the annoying electrician.

000ggg profile image
000ggg

Wow I had a really long reply that I was dictating here and I lost it I hate this site because that happens to me so many times 😡 Quinn and I are hiding out at my studio because the flooring installation is so loud. They have been coming here at like 730 and 8 AM for two days now and I don’t think I can take much more of this stress. Fortunately the electrician is going to come this afternoon and I was able to get out and purchase a new lamp last night in case I need it. I was up until about 4 AM cleaning up the mess they left and putting brown paper on the stairs to try and reduce the mess today.

I have wondered about the accuracy of A1c people said that the last two weeks is really more what it is based off but who knows. I have never heard the term glyconator before and I cant find it anywhere.

I can’t believe that you were walking around with 863 blood sugar! You must’ve been so terrified especially having no clue what was going on with you. I don’t know how you made it through all of that really is a miracle. 💕That was the most fearful thing for me too, the vision, it was all bad but the loss of vision scared me the most, I really wondered if I was ever going to be able to see you normally again. And it made me feel so vulnerable.

I’m surprised that your vision corrected completely after one week, you’re very lucky. They told me mine was going to take 3 to 6 months and even then it was not guaranteed. And it did take about 4 to 5 months but as I said it never went back to what it was after that. I have not used the pinhole glasses because I just feel like they strain my eyes now and with all my vision problems it would be kind of pointless because I know it’s not going to help whatever happens. But you should try them, they may help you when I was using them before I found after wearing them for 20 minutes I could read on the computer without any glasses for half an hour or so. But of course my lens was distorted from the high blood sugar then.

Usually they will test your A1c at diagnosis or if you go in the hospital just a routine thing to do but so they can monitor your A1c coming down as you start treatment. Mine went from 13% to 8% and then finally and said the fires I think but it took a few months because it had been so hard for so long I guess. I was going to the Endo every 2 to 3 weeks and every 4 to 6 weeks as I recovered from the DKA. Doctors are supposed to test everybody’s A1c 1x year now but mine never tested it at all, if any of them had tested it I would’ve been diagnosed before I ever got a DKA and I would not of had all of these terrible things happening to me. It probably also would’ve been easier to manage because I would not of gotten to that point of zero insulin and I could’ve had a longer honeymoon etc.

Yeah I think the keto diet can be really good for some people but obviously not for me. I don’t know what I’m gonna do if I ever have a condition that requires it because I don’t think I could manage it. I forgot that it is bad for hypothyroid to. Do you have trouble eating fat? I used to have trouble with that and maybe I still do because when I first started having all of my stomach problems they found out that I have trouble absorbing sad and I was excreting a lot of it so that could cause some of my IBS symptoms to. But if I don’t eat fat now I feel like even worse like I’m starving being on the insulin and everything.

You know I just assumed that everybody with type one live with all these fears but I guess people who are more stable have a more normal life right? I have heard a lot of people say that the stress is just unbearable. And you’re right nobody could really understand it. Unless they are living with it or they have a child or r you know I just assumed that everybody will type one live with all these fears but I guess people are more stable have a more normal life baby right? I have heard a lot of people say that the stress is just unbearable. I just don’t know how to deal with the fear of it maybe I should get some counseling but then I think how r they possibly going to understand what I’m living with because they don’t have to live with it.

I don’t know what will happen, we have a dual citizenship Canada and USA. I was born in Montreal but when we came here my father would not allow us to get American citizenship until the Canadians allowed dual citizenship. So I can go back there and get health coverage etc. after living there for a month. With All of our health problems is just not going to be possible to have a life here and survive etc if they start ruining the whole healthcare system so we will have to go back. I don’t want to though I don’t want to leave my home here I mean I’ve been living here most of my life this is where all of my memories with my cats etc. I just cannot imagine living anywhere else. And I will have no job there. I mean I really will have an even worse life there I’m sure. Although financially and healthwise it may be easier. I would still have to pay for dexcom and the tslim because they don’t cover that there however I will not have to pay huge fees for insurance and a lot of things are guaranteed coverage like hospital stays at CeteraEverything else is so much cheaper there of the insulin and stuff like that.. I don’t know what will happen but my father side if the wacko gets elected again we’re definitely going back. But he has wanted to go back there for many years anyway because of the whole health situation etc. I feel so stressed from everything and so exhausted I just want to stay in bed all the time lately.

Yeah I guess we just have to look at the good things that we do for them and that they know they are loved. Merlin did not come last night although Fred and cinnamon and Georgio were here twice. I was supposed to give him his second worming but I guess if I give it to him today it’ll still work probably hopefully he shows up tonight. It was raining heavily and also the flooring people left a bunch of stuff outside by the front door so maybe that discouraged him. Wishing you blood glucose happiness as well LOL

G2G2 profile image
G2G2 in reply to 000ggg

Ugh, the noise & the mess. Very annoying. When will they be done? Glad the electrician came at a reasonable hour.

A1c really should be a standard test given to everyone. A1c isn't routinely tested where I live or with my mother in MD. Fasting glucose isn't enough. Diabetes advocates should be pushing for that, if they aren't.

Funny thing is that I wasn't terrified & was too busy to think about it & thought I had the flu. I rarely get sick & thought I had a whopper flu. Really stupid that changed vision & unquenchable thirst didn't register. If anyone told me they had a dog or cat who was drinking & peeing constantly & losing weight, I would have told them to run to the vet ASAP. By the time the vomiting & complete exhaustion set in, I was too out of it to think. When diabetes gets me down, I reflect on how close I was to death. In the hospital I told myself I'd do everything & anything to never go through that again. Sure the hospital staff was relieved for my discharge because I was pain about the horrendous food. Every meal, I said I was diabetic & refused the food. The idiot nurse would point to the sugar-free pudding & say it was fine. Got reprimanded for not eating much. Bring me something healthy & edible & I'll eat it. I didn't know squat about low carb, but knew diabetics shouldn't eat pancakes, French toast, sandwiches, potatoes, rice, pasta. I couldn't order eggs because the hospital used a commissary system where the food was prepped in a central location & shipped to them. Salads were limp, veggies were rubbery, meat was floating in starchy gravy. Each meal was super high carb. Disgusting.

Fat doesn't cause digestive problems, but I just don't enjoy it. I see recipes for fat bombs & cringe. I like butter & cheese, but not liquid oils. I use coconut oil for cooking & baking & olive oil for salads.

I think there are T1's who have mostly normal lives. Some people handle stress better. I believe it's harder for people like us who were diagnosed later in life. We know how life used to be. There are also people who don't take care of themselves & they should have less daily stress from worry.

Private health insurance won't be effected by our beyond horrible embarrassment of a president & I can't fathom him being elected again. Nice to have dual citizenship. Canada's a wonderful country. Understand your father wanting leave. US sucks now. I want to leave! I know from friends who live in BC that each province's health coverage is different. One has a pump, so that must be covered in BC. They complain about the awful healthcare through the provincial system & have paid out of pocket for private doctors. One friend refused statins, but had to get the Rx filled or it would be reported to his doctor. Talk about Big Brother. He got the statins & threw them out. Every month he does the same thing. What doctors have to prescribe is closely monitored. So, it's far from great. Nowhere is unless you live in Norway.

Maybe someone on Tu knows about being a low or high gylcinator (or glycinater).

Makes sense the contractors & noise may be keeping Merlin away. Hope he shows his sweet face soon. What wormer? They're usually given 2 weeks apart to kill eggs that hatch. I use Drontal because it kills off everything with one pill.

000ggg profile image
000ggg

The floors are done finally! They finished that day, but there are still a few things, molding and stuff that needs to be done because he did nit gte enough for the stairs. It took me hours to clean up again but it was easier with the paper down. So much dust and particles of the flooring etc. everywhere oh my God! The other flooring person who put in the floor in the living room was much tidier.

I’m kind of upset because I picked out a floor that had a low gloss to it and even though I ordered the same exact floor this one is more of a flat surface so it does not blend as well with the other two floors that I put down myself upstairs. And it is harder to clean but we are stuck with it now. The moldings that he put in between the rooms are a little bit too high so I asked them to replace that and he said there is no wood molding that is totally flat so he’s going to do it with vinyl instead which is fine by me.

The Electrician did not come in he supposed to come tomorrow in the afternoon let’s see what happens LOL I did purchase a new lamp just in case and I got a very pretty stained-glass lamp to treat myself for all the hard work I have been doing with the floors etc. my father has a gazillion boxes we are going to load them in my car and I’m going to drive them to Goodwill.

there is so much to be done. I am so exhausted and I have to start teaching in September but I am trying to do it slowly so I don’t go into a terrible back spasms again. Saturday I had severe reflux again sore throat I just don’t know what is going on I was supposed to go back to the Gastro nurse but I had to cancel my appointments at a low blood sugar that day and I have not rescheduled it. Fortunately when I woke up on Sunday I felt better but my voice is constantly horse. I just don’t know what could be causing this. Maybe it is the vitamin D( have not taken any at all since my last 50,000 iu dose five weeks ago), or maybe it is the Restasis, my eyedrops? I have been on there for over a year now though so it is odd that it would certainly give me a severe reflux.

My best friend just sent me an article about a Doctor Who was paid off by the vitamin D manufacturers by quest laboratory in a bunch of other people and he has been promoting vitamin D testing and supplementation for many years. Was just missed from a board of Dermatology because he was also recommend saying tanning salons in order to boost vitamin D but in 2009 they are now labeled as cancerous. So obvious I don’t know how a doctor could ever promote tanning salons etc.

Yeah I don’t know why some people feel less stress with this disease I really think it has to be because their blood sugar stays more stable and they don’t have incidences of really low blood sugar or DKA. I don’t think there is anyway that you would not feel stressed out living this way. Unless you are crazy.

But yeah I think you’re right that being diagnosed later in life is very difficult I mean I lived my entire life normally. Yes I had a lot of health conditions and the IBS was crippling and someways but it was so much easier. It was nothing compared to this. I would just take Imodium or lie down or whatever you know. and I could eat whatever I want, with some foods out due to ibs and reflux, whenever I wanted to I could do whatever activities I wanted to do.

I just can’t do that now so no I don’t see how anybody could have a normal life with this disease unless they’re in total denial, Or they have much more stable blood sugar for whatever reasons. I know the thyroid diseases make it much worse because when I started really treating my Hashis It have improved a bit but not to the point or anywhere near I would say I am free of any of that stress. I cannot even go for a walk without worrying is my blood sugar going to crash either during the walk or hours later I cannot even get up and walk around after I have a meal because I am in danger of crashing to like 50 or 40 if I do too much. If I bolus less then I end up spiking so there is no solution for that. And I’m eating relatively low carb that is the only way that I can control that in any form.

I know someone on Instagram who was so terrified of lows said she let her blood sugar running very high and now she is in kidney failure and has retinopathy. she is on dialysis now and on the waiting list to get a double transplant. It is so difficult what she’s going through now I hope she gets the transplants ASAP. I find myself wishing that I could get a transplant and just be normal again. There was someone on TU who said she got a pancreas transplant, I don’t know if she got a kidney too. I don’t know why she had the transplant but she said her blood sugar was totally normal now although she still had to test it and she had no terrible side effects. She still has to test her blood sugar but that is nothing compared to everything else that we go through on an hourly basis.

Oh my God, do not get me started on hospital food! 😹 They try to feed you 60 g of carbs per meal no matter what you tell them, the last time I convinced them there was no way I could eat that many carbs at once ever. And they gave me something with gluten in it and my stomach problems got even worse LOL. When I was released from the ICU they gave me an all carb meal, French toast, fake syrup, and some juice. Took seven units for it and my blood sugar was 250 by the time I got home😳🤢.

Something happens to us when our blood sugar is so high leading up to the DKA and it really makes it hard for you to think clearly. And yoirs was super high😳 Have heard other people say they thought they had the flu to someone died from not recently and athlete he was at home and he was sick for several days and it turned out he was in DKA and nobody knew that he had diabetes. I don’t know why it’s in register for me either but certainly I was telling all of my doctors the symptoms of diabetes and I was suspicious of her towards the end so they should’ve diagnosed it at least two years before I went into DKA I went to seven gynecologists four or five I doctors and more! I was tested for lupus and numerous other conditions but I was never given an A1 C or a fingerstick and is just criminal!

About 15 years before I started getting all of the symptoms of D I knew something was wrong with my blood sugar. I bought a meter at Walmart and tested and I was having very bad lows like 39. So I asked a question online at a hypoglycemia website and they said I should eat some Fat, carbs and some protein which I did and then it went back to normal. I went through long periods where I did not eat and I was very active so I thought it was just because I was not eating enough and sometimes my blood sugar was also low in the fasting test, like 60. But it was the precursor of my type one diabetes and I have talked to other people with type one that also had lows before their diagnosis.

I wish I had bought a meter again and tested leading up to my DKA because I could’ve been self diagnosed much earlier. I had my second very severe yeast infection about five weeks before I was in the ICU, went to my gynecologist and saw some other doctor there and he tested my urine and everything. I never got the results of that but they didn’t say anything to me. I asked for the results last year I think and it did not show any sugar or protein etc. I’m just very surprised, they probably did not test for Ketones.My a1c was 13% at diagnosis so there is no way I wasnt spilling sugar etc. I wonder if it was a mistake?

Re ins, I think the private health insurance will be affected if they start removing protection for people with pre-existing conditions etc. They are trying to crash the entire house structure here intentionally.New York State is going to try and block it I don’t know what is going to happen. My co-pays to go to doctors already went up by like 50% I think and so did my co-pays for insulin and my pump supplies. Yes a pump would be covered in Canada but not the Tslim I don’t know if we ever go there by that time it may be covered. But Dexcom time is not easily covered That I would have to pay for out-of-pocket and is very expensive. I do not think the healthcare system is as bad as you’re saying there. I mean it covers all hospitalization without question. That stuff with statins happens here too. People are forced to get statins I have read about that tu. One of my father’s cousins in Winnipeg had a blood cancer and he was treated almost immediately with a transplant of cells, no charge to him, in one of the best hospitals in the world probably and he is doing very well now. So although there may be some problems I do not think it is that bad certainly it is a lot cheaper than here Because they control the cost of drugs and a lot of treatments.Here I have to pay about $10,000 a year just to get my insurance and then I have about at least $6000 of expenses on top of that even with everything they cover and I have good insurance. Wish the exploitation of sick people would stop everything everywhere and they would stop charging so much for all these things in this country but I don’t see that ever happening. Someone on social media group is transitioning from a very expensive medication and device she needs to stay alive to an oral medication in Canada and she is not paying a huge amount of money for all of this. Even though it would normally cost $140,000 a year for the oral medication!

Yeah Norway is great, I dated a man from Norway who lives here. he was an electrician and his family were electricians. his father was from Norway and his mother was a Laplander. He fell in love with me for some reason and wanted me to move back to Norway with him and he said he could get free retirement and health care there LOL. He was crazy so there was no way I was moving anywhere with him.

Merlin showed up again almost every night sometimes coming 2-3 times LOL and now Fred and Cinnamom are coming at the same time OMG! I gave him his second worming last night I think but he did not eat all of it- I was really stupid I should’ve put it all in a very small amount of tuna. I’m not sure what to do because they charged me $30 for two doses which is ridiculous, it was drontal. Think I can get that online, but I don’t know if it is safe to give him another dose because I don’t know how much he got.

G2G2 profile image
G2G2 in reply to 000ggg

Yay, the floors are done. Cleaning up after is a royal pain. Definitely take it slow. Impressed you put down the other floors yourself. I wouldn't attempt that, but you're an artist. Sorry they don't match. Disappointing. Strange they don't have the right molding. Too high for the doors to close? Seems it would fit since you had carpeting.

What did you decide about Vit D?

Do you take reflux meds? Wondering since that messes up digestion & that may account for lows. Just horrible how quickly lows come on & how quickly you could go into DKA from highs. Could it be related to IBS? Know a lot of diabetics have IBS.

Add me to your list. I was hypoglycemic for many, many years. No doctor told me I was headed for diabetes. They only told me to eat protein & carry snacks with me. Gee, thanks. To be fair, I didn't go to doctors regularly because I rarely got sick. Making up for that now.

I'd pass on a transplant because I wouldn't want to take immune suppressant drugs. I have a nephew with cystic fibrosis who has a lung transplant. A sneeze in his direction & he's sick. He didn't have a choice because he'd be dead without the transplant. Of course, transplants aren't forever as the autoimmune attack continues. So sad about the woman who intentionally let her BG go too high. I wanted to cry & scream at Tu members who did that to lose weight. Hard not to have an eating disorder with diabetes, but diabulimia is a scary extreme.

I've never had urine tested for glucose. It's not accurate. Glad I didn't live in the days of taking insulin based on a urine test. How did people do that:(

Your post ICU meal was the same as mine. Also loved the afternoon snacks of bananas, apples & fruit juice:) I was told I had to have a snack. No, I don't & I won't. Speaking of bananas, I was given huge potassium pills. Felt better after those. They wanted to give me some shot in the abdomen. I refused that. They said people in hospitals often have stomach problems. Yes, from the disgusting, unhealthy food!

Did anyone in the hospital tell you what to do? I got nothing. Had a diabetes nurse visit a couple of times to give me hand-outs. The day I was discharged, I had to flag down a nurse to show me how to use a meter & take an injection. Read the hand-outs when I got home. Reduced me to tears because some of it talked about carb counting & some of it talked about eat a piece of this the size of a deck of cards. WTF. I was trying to reconcile the two. No one told me how much insulin to take other than the old-fashioned stupid sliding scale. Through the hospital, I signed up for a diabetes ed course. Useless. I was the only T1. They had plastic kindergarten food to show what to eat. I left halfway through the second class.

000ggg profile image
000ggg in reply to G2G2

Well the electrician came and made a huge mess so I spent most of yesterday cleaning that up. One of them shattered a bulb, there was glass everywhere😳. The bright side was I cleaned half my room and giving away tons of things I don’t need. More to do though. The plumber came to see aboit installing the front door, a radiator needed to be moved now, ugh, the contractor is sick after surgery and last night I discovered a light in the hall was leaking again so now they have to look at the toilet above which is leaking, so sick of all of this. I started laughing because nothing ever stays fixed in this house, it is a disaster, that light has been fixed and replaced once already at least but our handyman did not figure out or fix the leak properly.

The electrician is a scam artist who wanted to replace the whole circuit board, but I nixed that saying we would get another opinion. We just had it all replaced about 15 years ago maybe and another electrician looked at it when we had a generator switch installed. I think they charged way too much for the lamp and a new dimmer etc because it was way more expensive than I ever remember. They said the power was not coming in evenly so they had to fix some wires. I looked online and someone else said they tried to do the new panel thing with them too and another electrician said it was fine. I hate my lamp now and I’m wondering if I can just replace it myself now? Or maybe my handyman can do it for less.

Last night my bg dropped to 48 after dinner, ugh, but caught in time and took 20g or. Spiked to 150 by the time I woke.

I am not going to take anymore d at all until I know what is casuing this reflux. I have gerds and I have to take lanzoprazole or I end up in the hospital like two years ago when I went off it. I started them because of sever gerd and thye helped, did not cause it. No acv does NOT work for me, lol. It causes severe burning and pain etc. I can’t eat any of those foods except in a very limited way and now not at all. My last endoscopy showed hiatal hernia so that may be getting worse. It all got much worse after my frist car accident. I’m sure my ibs possible celiac etc affects the d as well, doing gf fro cross contamination helped and no grains but it is not a cure by any means. I dont take the lanzo when I eat, usually before I sleep when I’m lying down. I may need a new bed but I sleep with mine elevated and pillow etc.

While the urine test may not have been accurate for daily management it is for going into dka because mine showed 1000++ urine, protein and highest ketones 2 days before.

That is awful you had no instruction😳 Or no good instruction. I have heard numerous stories like that and it is criminal. I went to a class too, waste of time. A support meeting where a woman with type 2 was afraid to see me do a finger stick, wrtf??? She also told someone else I met at a jdrf group that adults dont get type1. I had another doc, ortho tell me it is a childhood disease yet again 2 weeks ago and he said so is ra, wtf? My gf was 50when he got graves and 70 when he was afflicted with ra. Plastic food, omg 😳😹😹😹

I had several people talk to me but the videos they told me to watch didn't work etc. lol. But I was having complications so I was not really in a condition to absorb it all. I had a bowel blockage coming out of dka where no doctor came to help, they gave me a drug but I was sure I would die, so horrific. I somehow pulled the poop out of me myself, and nearly passed out. Then a nurse was practically joking about my large bowel movement the next night. I’m sure that caused my dvt and a hemmorhoid which I never had before. I had vry kow potassium so they had me on iv for that and pills, eventually I refused the iv because it was burning my arm etc. after the blockage I think my leg pain started, dvt, but no one did anything.

I don’t remember it all but they told me start with 10 carbs per unit and then my basal was 28 and reduced to 8-9 in 2-3weeks. My family helped me figure the food out etc and dr b etc. but it doesnt work for me. When I got home I couldn't figure out the lancet device and my father started calling my endos lol. They caused a blood clot in my arm too with all the ivs. After I got out from the 2nd dvt visit, I was back for 5 days for that, my arm swelled etc. called endo and he again did not tell me to go to er.. ugh. Dont know how I made it through with my sanity intact. I did not sleep for 48-72 hours in dka.

I’m not sure what diabulimia is, people vomit on purpose or they just dont take enough insulin etc? Yeah it is terrible what happened, I totally understand the fear of lows, but thank goodness I feel so awful with highs and I’m more afraid of the other stuff. But when my bg was crashing all the time it was very hard, I was really terrified to eat at all.

Hope your bg is good😊🤗

G2G2 profile image
G2G2 in reply to 000ggg

I relate to your house woes. Soon as I get one thing fixed, something else breaks. Mine's about 115 years old. On the one hand, they don't build them like they used to. On the other hand, it's expensive to do even minor repairs, if I can even find the replacement. Love plaster walls & beautiful woodwork, but often long for a minimalist house without extensive molding to clean & paint. Our windows each have 12 panes. Takes days to clean windows!

Is your heat steam? Mine's steam, which is great. Moving a radiator's a pain in the ass. Why does it have to be moved? More mess! Hopefully, the leaking toilet's just replacing the wax seal, which it usually is. That's nothing. Replacing a ceiling fixture isn't hard, especially if it's controlled by only one switch. Bet you could do it yourself.

Diabulimia is intentionally not taking enough insulin to drive BG up to lose weight. Eat whatever without gaining & lose weight because there's not enough insulin. We know what that's like from DKA. Stupid & really dangerous way to lose weight. Yea, diabulimics go into DKA frequently as they dance on the edge.

I get the hospital checking urine for ketones, but not why for glucose when blood is easy, immediate & gives a real number to treat. I have no clue what 1000+ means in terms of BG. I don't know the relation between urine & blood glucose, Please explain.

We could write a book on the asinine things we've heard about T1, not that anyone would want to read it:) Equally ridiculous to say RA is a childhood disease. I bet if I went to the ER before DKA BG skyrocketed to 866, I would have been diagnosed as a skinny T2.

What horrors you went through in the hospital & after :( You were sick enough without those added in. Terrible. Wonder if the med they gave you for constipation was the same as the shot I refused? Really, how did you maintain sanity? Potassium really stings in an IV. I must have had potassium in the IV fluids, but remember little from the ICU. Vaguely remember they had to poke a lot to get IV in because my veins were collapsed from dehydration, I recall hallucinating & thinking not to tell anyone so I wasn't put in the psych ward. Also remember begging an ICU nurse for water. She said I was getting enough IV fluid & water wasn't allowed. She must have felt sorry for me because she snuck me a few ice chips.

I saw a hospital doctor once, if you count her hanging in the doorway & asking a few questions, The plastic food was funny & patronizing. We were given paper plates to choose our food. We were given a book, which the instructor read to us. Again, kindergarten. Great education. Criminal to flag down nurse to show me how to test & inject. I was going to write to the hospital administrator about how they threw me out without any info on how to use insulin, but figured he/she wouldn't care.

I can imagine how ACV hurt with a hiatal hernia. Owww! Sorry you have to take

lanzoprazole & raising your bed didn't help.

000ggg profile image
000ggg in reply to G2G2

The urine test was done at my physical and at the gyn, they test for glucose and protein and maybe bacteria etc and ketones. It’s pretty standard to do that at a physical and at the gyn although my new gyn doesn't do it. Usually ketones is done for d but there can be other causes. When your bg goes above 180 your kidneys start spilling sugar. If you are in or going into dka you will see high levels of sugar, protein and ketones, no ketones no dka. But then there will be kidney problems if only protein is high etc. I’m not sure how it relates to bg, finger stick etc. Mine was 279 at diagnosis but I was in early dka already, advanced dka when I got to the er, it was 389. The high ketones is the sign of dka, and does not always correspond to super high bg, then anion gap taken from an artery, co2, and ph confirms it.

You can have very high bg and not be in dka and you can have not really high bg and be in it. Neither is good of course.

I was already constipated 2 weeks before my physical and told my doc I felt poisoned, having trouble breathing before and while I was there, I kept asking him why, it was from Dka. He gave me something and metformin but it didnt help the c.

in full dka, your metabolism shuts down, no peeing or pooping etc. but there is waste in you, a large amount in my case. When you come out then you are going to poop, which happened after my first meal. But there was so much it could not come out and I had been severely dehydrated etc for 2 weeks at least. They tried to give me a drug that helps gastric mobility in dka at the ICU but I refused it because I had taken that before and I knew that it had been taken off the market for causing heart palpitations which it gave me when I took it.

Good thing I did not take that because I probably would’ve died. Because if I had been taking a drug to speed up my gastric mobility my bowels I think my whole body would’ve exploded when I finally was going to have a bowel movement.

As it was I felt like my whole body was going to explode and I was going to die. I was begging the nurses to get someone to help me and yelling at them, they just said the doctor had an emergency so finally I could not take it anymore and I just did it myself, I don’t know how and it was really horrific I was sure that I was not going to make it through all of that. It was not constipation it was a blockage which is an emergency, and I needed a doctor to help me get it out, But like in some medieval torture chamber I was left to take care of this on my own. They gave me a drug to loosen the sphincter muscles on order of the doctor but it was not enough, I may have exploded otherwise.

I found out later it caused not only the hemmorhoid but an internal and external vaginal tear and infection. I remember after that urinating and and it was burnig like crazy but I didnt put it together until I went to gyn and he saw I was still bleeding over a week later. The drug also caused me to have the runs etc for a few days after so my second stay I was constantly having to get up to go to the bathroom and I was using a walker then because of the pain in my leg from the DVT. In the middle of all of this of course my vision had gone totally blurry so I could barely see anything except with very strong reading glasses.

Gotta get to sleep will reply more later. I cant believe you clean that ,any panes, wow, id just change the windows😹 we have anderson windows and i hardly wash them at all😹

G2G2 profile image
G2G2 in reply to 000ggg

Hope you slept well.

Not urinating/pooping would be from DKA dehydration. Another awful doctor to give you metformin without testing first. Unbelievable they let you suffer like that in the hospital! OMG, was torture. A blockage! You could have died. WTF, was there only one doctor in the hospital? Good thing you refused the drug. Vaginal tearing, a hemorrhoid & an infection:( Man, did you ever have a malpractice case.

Can't afford to replace windows. Have 32. Yes, I counted:) I only wash the inside & use a hose with solution attached for the outside. I used to have a handyman who washed the outside & cleaned gutters. Unfortunately, he moved.

000ggg profile image
000ggg in reply to G2G2

Somehow I have gotten back to my old schedule again but tomorrow I have to get up early because the plumber is going to call at 8:30 AM and come in the afternoon. The radiator has to be moved because even though I ordered a half light sidelight it goes all the way to the floor and in this crazy house there is a radiator right next to the front door on one side! can you believe it?

Somehow nobody figured this out even though I had at least two people looking at this job. No one realized that the radiator was going to be in the way of the sidelight LOL. At some point this contractor when he came to the house said it is going to be a problem but when I told him I’m getting a half sidelight he said it is OK, I mean I just cannot believe this is his profession and he did not realize that it was not going to be OK, WTF?

Lowes where I purchased the door also did not realize this even though I think I showed them a picture of the door/ house etc. And I actually had one contractor who wanted to install the door without ever coming to look at it ahead of time, can you believe it? Then the plumber who came to give the estimate so that this window sidelight door must’ve been a special order because he has never seen anything like that before and I told him well it was built in the 1960s, and this is exactly what it was like, not a special order LOL.

I feel kind of stupid that I failed to figure this out myself either, I think our handyman who was originally going to do the job probably would’ve figured it out before it got to the day of the actual installation though.

The current contractor tried to blame me but I called the two major door manufacturers and they both said there are no half side lights that don’t go all the way to the ground and they wouldn’t even build one as a special order either. Then he had tonsil surgery and has been out of commission for three weeks but he said he can go back to work on Wednesday. I just got an estimate from our plumber for moving the radiator because his plumber said he didn’t have time to do it LOL. I guess I should’ve realized that after my sweet babies pass I am not functioning very well brain wise and it is not a good time to try to do stuff like this. But it really needs to be done and a lot of this should’ve been done years ago.

Yeah initially the dehydration is from that etc but when you get to the point of high ketones etc your whole metabolism shifts and shuts down. I don’t remember now if I was still peeing like crazy by the time I got to the hospital probably not but my kidneys were trying to get rid of all of the sugar, the protein in the ketones etc.

One exception to Ketones in urine by the way is if you get to the point that you were at when you’re going into a coma then your body starts producing a ketone that is not detected in the urine only in blood. And it can get pretty confusing because as you’re coming out of DKA your body goes back to making the other type of Keytone even though you’re getting better. So some hospitals still do urine testing apparently if they can I mean if you’re so dehydrated there’s no urine I guess there’s no way to do that. They mostly just go by the blood test now or the fingerstick a lot of them use the fingerstick Keytone meter I never have that’s on they only do bloodwork and then fingersticks for blood sugar. Fingersticks Every 20 minutes And full bloodwork every hour.I had no sleep and yes I was losing my sanity from everything.

I also read that when treating DKA they should give you fluids first and not too much insulin because you don’t want to lower the blood sugar too quickly. That causes you to bounce around and it takes longer to come out of the DKA which is what happened to me. They’re supposed to keep your blood sugar around 200 for a few hours and then gradually lower it down if they can.

I have no clue what was going through their minds, it is worst hospital in the world, released me with dvt etc. and alot more. No, no malpractice suit but I definitely should have sued them and all my doctors. The h did not charge a $26,000 bill for the second stay which my ins denied because I threatened to sue. But I should have anyway. That was my doc who diagnised me, said come back on Monday to see if I need insulin, said I amd type 1,5 AND type 2 wtf? Not even possible as far as I know, and I was already in an emergency obviously. I called the next day and spoke with the pa, said I fell very ill and I think I’m in dka, who said I can’t be in dka, he can tell from talking to me on the phone, my bg isnt high enough, only children have type 1 etc. I should have gone to the er near me.

Wow, that is a lot of windows, we have 28 I think. They must look beautiful though in an old house. I just cleaned the 3 in our kitchen and they were so dirty😳 we used to have panes too but we almost never cleaned them, they had storm windows and they didn’t get very dirty. The Anderson windows do not have storm windows they get really dirty all year round. They are pretty hard to open up to clean them even though you can do it all from the inside but it hurts my neck to do it and I do it so infrequently that I forgot how to do it each time 😹 having somebody do it for you sounds like a better idea to me. Too bad he left.

That is so terrible they didn’t tell you what to do I mean I just don’t understand how they thought you’re going to figure this out on your own this is life-threatening.

I don’t remember which drug it was now, do you? It actually helped my stomach and my Gerd when I took it I only took it once but it seemed to heal the muscle in my esophagus. And my diaphragm.

I do not remember drinking or feeling thirsty at all when I was in the icu, my mouth was so dry and had sores and it was hurting me though I remember that. I had 2 IVs one for the fluid and insulin and one for the potassium I had so many IVs and stuff in my arms when I went home I had bruises all over my arms and they were painful for 3-4 weeks after.

First I was in the ER for 17 hours before they had a bed for me. My blood sugar was going all over the place it went from 240 to 40 in about 20 minutes. When it went to 40 I asked the nurse am I going to pass out etc and she said I have the magic bullet and they put two huge syringes of glucose in my iv. It was all very surreal and I don’t remember feeling a lot those first few hours. Then when I came out of DKA which took 2 to 3 days, the first meal they gave me was fluid only maybe the first 2 to 3 meals, nothing solid.

We have steam heat I think, there are pipes but it is not one of those old radiators they are baseboard radiators, is that steam? I don’t even have any clue😹 I think not I think it’s hot water because it dries you out too which is really bad for me 😳

There is always too much to clean, hate it. I just cant do all this anymore. Your house sounds great though, even with all the cleaning, but yes minamilism is great for that at least. we have almost no carpets now , much easier and better for asthma etc.

I put a cat door on my bedroom door for Quinn and he is staying up all night now , I think I need another cat who will stay with me😹

Wow diabulimia is really awful, that is very dangerous. I think I read some posts like that too when I was reading more there. I guess these people have never been in DKA and they have no clue that they can actually die from that?

I would not be surprised if you were misdiagnosed, there is so much of that it is crazy. After I got out of the hospital I went to get my hair cut a few weeks later and my hairdresser told me he had type two and his diagnosis was after he went into a coma from high blood sugar. He had no clue that he had diabetes at all. He was on insulin too, a thin type 2. I am just so fearful one day I’m going to run into some wacko won’t give me insulin and says I am not type one because there are so many crazy people in the medical profession.

I saw so many people when I was in the hospital that I don’t even remember who all of them are anymore LOL. one of them apparently was a doctor from the ER who came in to talk to me in my room for 5 minutes about nothing and then billed me $800 for that somehow I did not pay any of it though because I argued with them about it.

At one point the doctor who was in charge of my case on the second visit started yelling at me after my family left, she came back to yell at me. I told her to leave and said you’re fired but she was still on my case when I was released from there can you believe it? That was when they were not getting an ophthalmologist to tell me what was wrong with my vision I told her you’re not the one lying here with your vision totally blurry etc and she got mad at me. Then she was trying to have me do a CAT scan of my brain to see what was wrong with my vision at the end LOL.

Speaking of which my father’s doctor thinks he has a pituitary adenoma, because his testosterone is sky high, and LH and FSH are high. So he has to have a CAT scan now. I’m very worried about this. I think they’re going to arrange it all tomorrow at the hospital near us hopefully. He is a prostate cancer survivor and I’m so worried it is another cancer.

G2G2 profile image
G2G2 in reply to 000ggg

Hope your father is ok. So scary. When will you have the results?

Oh, what a mess about the sidelight! Does anyone know what they're doing? Evidently not. Don't feel stupid. That's the contractor's job. Yea, unusual to have heating there. Complicated to move steam radiators to be connected to existing furnace pipes in the basement, drilling through the floor & running new pipe. Do you have a boiler in the basement heating the water that flows through the radiators? Called steam heat, but it's hot water, Steam heat can be baseboard heaters. I have those in the kitchen, but those everywhere else are cast iron because of the age of the house. Definitely need a plumber to move steam radiators.

Interesting about a different type of ketone that only appears in blood. Bodies produce ketones constantly, but of course not in DKA quantity. I have a CDE friend. I emailed her about the high/low glycation thing & will ask about the biochemistry of ketones only in blood.

I was finger stick tested every 15 min in IUC. Blood was drawn a couple of times in ICU, but not every hour. They must have been really concerned about you. I only had one IV. Must have been combined fluids, potassium & insulin. They may not have had many concerns about me becoming hypoglycemic with 866 BG:) The main reason for lowering BG slowly is because too quickly causes eye damage, so they're cautious with DKA. I never had urine tested in the hospital. When in the regular ward, blood draw was every morning. I was in ICU about 30 hours. Felt like forever. Horrible you had to wait 17 hours, I was given food after leaving ICU. No liquid meals. Interesting how different hospital procedures are.

Really WTF saying you were T 1.5 & T2. Easy to know which with tests, but easier to just label someone out of ignorance. High c-peptide is T2. Of course, antibodies designate T1. Hate doctors. No one can say you're not T1 & take away insulin. All you need to do is show your antibody labs or threaten to sue for malpractice. I've read of T1's having insulin resistance like T2's, but it's rare & I question if these people are very overweight needing mega insulin doses. Your idiot doctor would have no idea if you were insulin resistant. No more labs needed because people can talk to the PA for DKA diagnosis:) Astounding.

How soon after was the second hospitalization? For what? They did everything wrong that was possible to do wrong. Wow, 240 to 40 in 20 min! So much for lowering BG slowly. I've had two serious lows that resulted in EMS coming to my house. Both times I was given a dextrose injection in a vein, which worked super fast. Much better than nasty glucagon shots & dextrose is cheap.

Diabulimics do go into DKA. With an eating disorder, that risk is secondary. They also don't care about the future complications of high BG. Serious biz.

The sliding scale hand-out was ridiculous, plus it said nothing about basal dosing. Hell, I didn't know what basal insulin was. I had to research everything immediately as soon as I left the hospital when I felt awful. My first basal was Lantus, which stung & didn't last 24 hours as stated. Hated it.

Do you mean the drug I was offered that was a stomach injection? I have no idea. I wasn't told the name & was told it would prevent stomach problems. No thanks. I refused it. Great it helped you. The only meds I took were insulin & once huge potassium tablets.

Unbelievable a doctor yelled at you!

000ggg profile image
000ggg in reply to G2G2

Sorry I have taken so long to reply. Ugh. I Started teaching and I have been super stressed out. We had no ac the first class and I felt passing out awful. 😳

My father had his tests finally today after several fiascos trying to get the rx. No results yet but his symptoms continue to get worse, he is falling asleep all the time and doesn't wake up often if you tap him. He had 2 ct scan with and without contrast. I’m very worried.

I cant believe they told you nothing about what to do, really unbelievable. 😳👎🏻 My doctor who diagnosed also didnt know what basal is either although he pretended to. Its like cave age diabetes knowledge with many of them it seems. I dont remember what the sliding scale is now.

Still don't get why it’s called diabulimia when you are not making yourself vomit though? I guess I’m so terrified of dka etc it seems hard to believe someone could not be scared of that. But anorexia is similar.

My ph was very low, very low potassium etc. and maybe it was their protocol to do it every hour but the er nurses said I was the second sickest patient with the other being a long term type 2 in dka and kidney failure.

Yep with your bg low was prolly not a concern but I think its weird they didn't do blood work more often. When they put you on insulin if they over do it it causes bg to bounce all over. Which is what mine did, so the 240to 40 was just one extreme example that I remembered because I thought I was going to go into a coma. I read that they are supposed to give fluids first with slow introduction of insulin and keep bg around 200 for a while till the body adjusts and if not it takes longer to come out of dka too. I didnt read that about the vision except in regards to lowering a1c not too fast etc. but something happened to my vision in dka for sure and it never recovered completely.

My doc did c peptide but claimed he did not have the result when he came to see me in icu and never gave it to me cause he knew I had a lawsuit. As I recall, he said I was mostly 1.5 and a little type 2 because I told him I like to eat sweet things 😹😹😹😳

My second stay was the next day for dvt which they released me with clear symptoms of, I was limping and having pain, no doc there to examen me etc and nurse said it was muscle spasm from low potassium😳 by night I was in severe pain and could barely walk. I called the endo told him I had swelling, pain etc, and it had to be related to dka, icu etc, he said no 😳, he also failed to do anything and said go to ortho. Went to ortho, also at offices at that hospital, he said it is a blood clot go to er immediately. He was disgusted and correct. By that point it was so painful I screamed when the tech touched my leg doing the ultrasound. I was on a walker the second stay.

Yeah nice he was sure he could diagnose me not dka over the phone etc.😹😳 I had correctly diagnosed myself and should have gone to er near me immediately.

So scary you had those lows, I’m so terrified of that cause my family will be hopeless I’m sure. I get true panic when I’m dropping. Yes, iv dextrose is the best, no vomiting etc and fast. Too bad we cant do it ourselves. Weird when i went from 240 to 40( i cant remember if it was that or the reverse now) I don't remember feeling a thing like I feel now from lows. But i was bouncing all over for the first 17 hours or so I think

My antibody labs were done in icu- pos for gad but I would have to search to find them. The reason it concerns me is all the crazy stuff Docs etc have said to me about me as a type 1 adult diagnosis. My retinologist said to me this year again, so we are calling you type 1, wtf? Yes because I am type 1. I have antibodies and go into dka in 2-3 hours with no insulin or any basal insulin failure plus dehydration etc. i was in Dr F study and tested pos for specific t cells in type 1. But she said in a tu interview that no one gets type 1 after 40 I think. Umm, wrong!!!

I was on lantus too but it was not stable and then I switched to levemir, not stable either. Lantus made me gain weight. It must have been a different drug maybe? Mine was a pill.

Well the plumbing is done, radiator moved, but the door is still not done. This Monday hopefully. I have to put some tiles back and 2 need cuts. Ugh. I want to get it done before we find out what is going on with my dad etc. I forgot to ask what type of heat😹 will ask my father.

I hope you are well, not too many lows and ok with this terrible heat. It poured today while I was shopping but it is very humid still here.

G2G2 profile image
G2G2 in reply to 000ggg

So sorry about your father. Hoping hard it's nothing serious & you get the results soon. Understand the worry. I'd be out of my head.

Can relate to no AC in your classroom. When I was in school in NYC, there was no AC. By the end of June, it was an oven & part of Sept was also sweltering. In high school, we could wear shorts & that helped. I don't remember being hot in elementary school. That was a newer building, so maybe there was AC.

True about cave age diabetes info. Sliding scale is ridiculously inaccurate. You get a chart to dose. Based on current BG & meal, it shows you what to take. You're supposed to decide with your doctor what meals will consist of. You can see the problems with this stupidity. I guess doctors are given broad-based charts to give out because they're certainly not going to take the time to design individual sliding scale charts, if they even know how. Also, patients aren't honest with doctors about what they eat. So, the hospital gave me a sliding scale chart with nothing on it that I'd eat & no other instructions. Nothing about correcting highs. Doesn't take individual differences about insulin sensitivity, exercise, illness or stress into account. Or, people who have higher insulin needs because of thyroid meds or other meds. I checked about basal online because I didn't trust what the hospital doctor wrote on the Rx.

Bulimia isn't only about vomiting. There are other bulimic methods--laxatives, binge & fast, excessive exercise, enemas or a combo. Vomiting is only one way to purge. Not taking insulin is another bulimic avenue to eat & lose weight, hence the name.

Luckily, I have no problems with Levemir. I take it twice, 12 hours apart. Lantus is known for weight gain & is called Fat Lantus. Lantus reportedly lasts 24 hours. No it doesn't & has peaks & valleys. I don't understand what you mean by a pill. Lantus is injectable, of course.

T1 with a little T2! That has to be in the top 10 stupid remarks. Howled at "we're calling you a T1." Surrounded by morons. Terrible for the nurse to tell you that you were the second sickest person. No one told me how I was doing & I didn't ask. So sorry about your horrendous DVT experience. All those idiots should have their licenses revoked! Don't know if I told you about my friend with arrhythmia. Doctor told him to do yoga. Yoga! About a month later, he had a stroke.

I've read the opposite about lowering A1c. Highs are never a good plan when damage is cumulative. I can't see the benefit of slowly lowering A1c. When I have a high, I want it down ASAP. Know you do also with DKA looming over your head.

My CDE friend answered. I had the name wrong. It's being a low or high glycator (not glycinator). She said the only way to know is from A1c & how it corresponds to daily finger sticks. Of course, A1c is skewed by how long the person's RB cells live. Anemia would make A1c falsely lower. I also asked why some people go into DKA from not super high BG. Afraid she didn't know.

She explained about different types of ketones. The levels of beta-hydroxybutyrate (BHB) in the blood increase and the acetoacetate normally seen in urine decreases (but acetone in breath increases markedly).

Wow, you were in Dr. Faustman's study. What happened?

Glad the radiator's moved. What did you decide about the bedroom light?

Dextrose in syringes can be purchased, but I don't how to shoot into a vein. I'd like to learn to handle severe lows myself.

A steam bath here. I don't remember a summer that's been more humid. We're usually spared intense heat & humidity from the altitude.

Hope you're feeling well.

000ggg profile image
000ggg in reply to G2G2

Just to let you know my father does not have a tumor there, so relieved, they said it is a 1/2 empty scella with small pituitary gland. I hope they figure out why his hormone levels are so high . I’m so exhausted and will write more soon. I discovered a tick on my tummy of all places today, I removed it and went to citi md after teaching. They gave me 2 doxycycline pills which I took there and said to come back for testing in 4 weeks. I have a red bump but no bulls eye rash yet. I dont think it was on me long so hopefully nothing was transmitted.

It has been one disaster after another with leaking floor pipes, a leaking boiler now as well and plumbers and boiler people here every day😳 we have hot water heat and no basement, it is on a slab, so terrible because all your ground floors can be ruined with no warning.

In addition the door is still not done, he didn't come or came and left without to even speaking to me due to rain. Supposedly he was there and left and then texted me. I was up at 7:30 and out of freezing cold shower by 8 am, his arrival time and heard nothing at all. I was very upset that he didn't warn me he may not come due to rain because I spent hours putting drop clothes on things etc. it was barely raining. and then he threatened not do the job at all. But I think it will be done Th if there is no rain. I hope so, so sick of this. I decided to keep the lamp because I’m too tired and too scared to do it myself and I’m used to it now😹

I was not in the actual study in terms of treatment, not selected, but I went one year with a friend to donate blood and was then accepted into the pool. I did not go the following year though because my friend moved and couldnt participate when we had signed up and I really did not want to go by myself.

That whole trip was terrible because my blood sugar was going all over the place and I had to do all of the driving etc. and get up early. So I don’t think there’s any way I could’ve participated in the actual study even if I had been selected, unless I moved to Boston for a while. I remember after I donated blood the first year they asked me to get tested for Epstein-Barr virus because they were doing a study on people that had type one and Epstein barr. That was after I told them that I was maybe too tired to go there again I think. It turned out that I did have Epstein-Barr not just an exposure but I actually had a reactivation of that after I was out of my first two hospital stays. My hematologist tested me again for that but he has never told me the results, even though I requested them two to three times from the office. .

Are you ok with Florence? I hope you have not had to evacuate etc.

G2G2 profile image
G2G2 in reply to 000ggg

So happy for the good news. YAY! Thanks for letting me know. Now for good doctors to determine the reason for high hormone levels. What does 1/2 empty scella with small pituitary gland mean?

Great you immediately went to Citi MD. If, heaven forbid, it's Lyme, taking doxy right away is the best thing to do. Was it a deer tick? They're really small, not like the brown ticks usually on cats & dogs. Deer ticks are a reddish color with a black oval black area on their back. Not everyone gets the bullseye rash. Just so you know, Lyme testing is incredibly inaccurate. Lots of false positives & false negatives, so don't freak when you get the results. Accurate Lyme tests are done by IGeneX Lab. Stephen Harrod Buhner is a leader in treating Lyme. Sucks because we can get Lyme from infected mosquitoes & flea bites.

Oh no, leaks! Sorry. What a pain in the ass. Has it all been fixed? I can't believe the bs you've been through with the door & sidelights. Ugh.

I filled out the initial form for Faustman's study, but didn't submit because I can't afford to fly to Boston numerous times & stay in hotels. Understand you not wanting to go yourself. If I was closer, I'd love to participate.

My functional medicine doctor tested for EBV & another virus. EBV lab showed I had it, but it wasn't active. Back to the drawing board of why I got T1.

Florence isn't supposed to hit where I live (too far west), but heavy rain & wind are expected. Been nothing but rain for the whole damn summer. Rained twice today. Humidity is unbearable & the ground is saturated. With additional heavy rain, there will be flash floods here. Creeks & rivers are already high. My house has a lot of white pines, which easily fall over when the earth is saturated & there are strong winds. Oh, joy. I should have the tree guy on retainer.

000ggg profile image
000ggg in reply to G2G2

God I really hate this site I just typed along reply to you and it is lost just because I pressed on the wrong thing, it is very poorly designed it should save your reply so you can just go back to work.

I hope you’re OK and have not lost any trees etc. that sounds awful. The humidity has been pretty bad here too I don’t know sometimes I really could not take the humidity however it does help my dry eye and my dry skin etc. I don’t think I could live in a dryer climate.

Empty Sella means the space around the pituitary gland has filled with fluid because the gland shrunk. Some people just have that or could be secondary to something else. His doctor now thinks there is no cause for concern even with these high hormone levels since there is no tumor. I wonder if that is true? This all seems a bit odd to me. But of course I’m relieved that there is no tumor. I wonder what is causing all of these symptoms maybe it is just aging and other health issues? I just feel his doctor is making the mistakes here and there could be other things that are causing all of this.

The door is finally done, the leaks, there were 4 separate leaks if you can believe it. seem to be fixed now except for the roof, but we will see what happens with the furnace. They had to come 2 days in a row for that or was it three I’ve forgotten now. The washing machine was leaking too but that has been solved. The floor pipe leak has been excavated and repaired so now we have to get an insurance adjuster to look at everything because they will pay for redoing the floor. Last time they just paid it.

I’m kind of in shock from the door because I feel like I’m in the wrong house now and I feel sad that Syb never got to see it. Wish I had my old door back, except for the part about it being so hard to open that it caused back and neck pain LOL it’s gonna take a while for me to adjust to all of these changes I don’t know if I ever will completely the worst of course being all of my furbabies are gone now.

In addition the door has two little scratches right by the handle LOL so I have to order some paint to cover them up.

I wonder if the EB we did play any role in what was going on with me. Certainly I seem to recall feeling chronically tired and sick about 90% of the time I would say. I went back to the doctor cause I woke up with a terrible sore throat yesterday it is not strep and she thinks it is severe sinusitis and reflux with maybe a virus. I will go back in three weeks for the lime testing. The doctor there told me that test is a new test which is much more accurate now I think it may test for other tickborne diseases as well. I’m wondering if it’s maybe the doxycycline that made me feel a little nauseous headache and terrible sore throat etc.

I really cannot stand to live with these episodes of terrible sore throat‘s and reflux anymore and I don’t know what to do I guess I have to go back to the Gastro and Ent Doc however I do not think they are going to be able to do anything to help me. And I’m scared I’m gonna get sicker from having that thing stuck down my nose. Just cannot take feeling so ill all the time anymore. She rxd me a Z pack but I have not started taking it because I think I still have a side effect from the doxycycline and I’m wondering if that is what made me sick and have bad reflux again etc. or if I really just to have a very bad sinus virus and it’s chronic or something or maybe it is EBV in a bunch of other stuff.

I was tested for Lyme disease at least twice in the past and one of the test so there was something that was positive however the doctor at that time does not think it was.

Just keep dreaming of my old life when I could eat like a normal person etc, go to sleep earlier and wake up feeling not so ill and not worrying about my bg and everything all the time etc. just to have that freedom I would give anything to have that again.

I can’t remember if I mentioned it but two weeks ago I walked up the stairs and my heart was pounding very rapidly for about a minute. I have no clue what caused it and I’m thinking something has to be wrong and maybe I need to go back to the cardiologist again.

The hurricane looks pretty bad from what I have seen on TV and I hope you have not been more affected by it than you thought.

The door contractor is going to look at our leaking roof because yes that was leaking into the ceiling again today too. 😳🤢This house is just a never ending disaster LOL. Not sure how much more of it I can take really UGG

In terms of the A1 C I think what they mean is that if it has been very high to the point that the lens in your eye was changed you do not want that to change to rapidly it’s not about just lowering a big high it’s about changing the shape of your lens back to what it would be with normal blood sugar if you do it too rapidly that is what causes retinopathy. I saw at least two people at tu diabetes who said that happened to them when they lowered their A1c too rapidly after being high for a long period. It is not like when you just have a too high blood sugar and you want to get it down as fast as possible. I do have the feeling that I always do it cautiously because I can crash and drop like a rock. Unless I think I’m going into DKA and then I do want to get it down really fast.

I will write more later I have been up at 7:30 AM for two days in a row and I can’t understand why am still up. LOL however I did fall asleep after eating for a bit at least an hour and woke up to a blood sugar of 50 to drink some juice and I hope it does not speak now text, says 96. This was my second nap of the day and I was not sure if I was even going to get to go out at all that’s how tired I was. I’m wondering if the lack of sleep is making my throat and my reflux worse.

G2G2 profile image
G2G2 in reply to 000ggg

Do other forum platforms allow unposted messages to be saved?

Sounds like your father needs another opinion. Agree with you the cause should be found. Heaven forbid, doctors think or research other factors when their expensive scans don't produce an answer. There's always another way. I wouldn't chalk it up to age because he feels bad from whatever this is. Not like the aches & pains of getting older. Seems that hormones would be low with a shrunken gland.

The heavy rains & some wind aren't supposed to hit until Sun & Mon. So far, extreme conditions aren't expected. Here's hoping! Appreciate you asking.

Damn, four leaks & the washing machine. Good that's all fixed. You're being haunted by water. Glad to hear the door's done & it's easier on your back & neck. Hope the roof's repaired soon & you can put all this crap behind you.

Doxy can cause nausea & irritate the esophagus. Do your sinuses hurt? Understand not wanting to take Z Pack. Personally, I avoid antibiotics because they usually make me sick. I try everything else first--Vit C, herbs, extra zinc, essential oils, etc. I used to take Sambucol elderberry for the flu & colds. Worked like a charm, but I don't take anything that's an immune stimulant any more, of course. For sinus stuff, I put essential oils in steaming water, tent with a towel & breath in. Tea tree oil, peppermint & eucalyptus oil work well. If I'm going to be out, I put drops on a cotton ball & breath it in as needed, but steaming works better. Oregano oil orally is awesome for bacteria & viruses. Comes in drops or caps. Astragalus root's also wonderful. It's an adaptogen so doesn't overstimulate immune response.

I don't remember much about having EBV, other than tiredness & sleeping a lot. Was too long ago. I'd come home from work, fall into bed & sleep 12 hours. I must have taken a few days off from work. Pneumonia knocked me on my ass more than EBV.

Relieved there's a more accurate Lyme test & one that tests for other tickborne diseases. Always wondered why this wasn't done for humans with the prevalence of tick diseases. When my dogs get heartworm tested, the snap test tests for Lyme & three other tickborne nasties. The snap test isn't accurate because the results only show exposure, not infection. I believe the common human labs also show exposure. Had a cat who almost died from anaplasmosis, another tick delight. Poor Lewis so sick.

You didn't mention your rapid heart rate. Since it only happened once, perhaps it's nothing. Could have been something as minor as a thyroid surge. Having a tube up your nose & down your throat sounds awful. So sorry about reflux:( Horrible.

Thanks for explaining about lowering A1c.

I'd also give anything to be normal again. Like having a 50 lb. weight around our necks. I do my best, though not always successful, to not think about my former life. Too upsetting & I try best I can to move forward.

Hope you got sleep.

000ggg profile image
000ggg

Sorry I have taken soo long to reply, again. Tons of stuff going on and I am even more exhausted. How did it go with the trees? Did you get affects from Michael at all? Hope you are ok..we had a ton rain yesterday and some branches down and it looked like people across the street lost power today.

Well now our chimney is dangerously bulging, it has been for who knows how long, it lloks like a tree branch fell on it- someone came to clean the furnace chimney and inspected the fireplace for free, so that is another huge repair for next week. Fortunately it did not fall on anybody and kill them or any of the cats etc.

We still have to seal all the holes in the wall from my studio sink pipe repair and open the roof in the tv room etc. the floor is not done there yet. The floor guy is taking forever to get the tile underneath tested for asbestos, then it needs another company to remove it. This is going to take forever. I should’ve just sent it out to test myself to a lab that I chose but then maybe he wouldn’t have trusted that.

and I had wasps in my room, did I tell you that one? I cant keep track anymore. The wasps are gone but the hole in the siding people didnt seal properly or really at all still has to be sealed. although today Quinn was looking at the top of the curtains so I was worried it was another wasp, but none visible. It is in the 50’s now so maybe too cold for them and the nest was treated.

The front door paint is chipping off so the door company is going to replace it, I just hope the new one doesn't have the same problem. Someone was supposed to clean the gutters and put a special cover on one the one that leak etc but they never came and did not return calls.

There is more I’m sure I’ve forgotten. The town redid the bottom of the driveway and left a bump, so the driveway will need done, but I wanted to redo the path anyway. Who knows when. 😳👀

On top of that I scratched myself on the metal capping and had to get a tetanus shot. I still feel sick cause it had wooping cough as well. My dominant elbow swelled up and is painful so I’m back in therapy. An xray showed bone spurs too. The pt said the bursa leaked. My reflux got even worse from Voltaren gel so I had to stop that and I read that Arnica can cause laryngitis and severe Gastro problems so I’m not taking that anymore either. I went to the ENT and the Gastro nurse. She recommended some tests but first I am trying protonix and I’m taking Zantac twice a day as well. She thought something could be wrong with the motility in my esophagus. I often have pain swallowing and when I eat things like eggs they get stuck. The problem is the test is done with liquid so I don’t know how they’re going to tell if you’re really having a problem.

The ent #2 was terrible, first one tested for bacteria did not find anything then I went back to do a scope I didn't do the first time and although he found swelling in my left vocal cord and a deviated septum he wrote that they’re only minor problems on his report. clearly they must be a sign something is wrong, why do I have all of this mucus etc.? And severe throat etc.

I could barely speak the next day after the scope. And my voice is hoarse all of the time, could it be hashis? So they were really pretty useless except for taking Zantac in addition which seems to have helped a little bit the gastro nurse also said to drink alkaline water which I’m doing I think it might be helping but I’m not sure. My eye doc said he does not think Restasis is causing it he said it could be a remote off chance possibility but I can’t stop that because in my eyes will be so bad.

I’m really very upset about the Arnica and I wish I had researched that more before I just started taking it so much. So I guess I will see now that I am not taking it if I get another really bad sore throat then maybe it’s not from that unless it is having some long-term effects. I’m just starting to not trust a lot of these natural remedies anymore and I’m going to research them very thoroughly before I use any of them. It is actually a poisonous plant which can never be taken in its purest form. I don’t know what I’m going to take for pain now, I’m pretty much left with only regular Tylenol or Tylenol with codeine etc. and the lidocaine gel.

I bought one of those little steam things but I think it’s pretty useless and I may return it. I think you’re just better off with boiling water in a bowl and a towel.

My father seems about the same so I guess we are just going to wait and see if he seems to get worse for now. Ugh. I think the thing is with the cancer that it could start getting worse and the PSA is going up so that is what they watch more- when it gets to a certain level than they do hormonal treatment again.

I have never had pneumonia fortunately and I hope I never have that. I think I am due for another pneumonia shot because I had one five years ago. I still have to get the flu shot but I’m going to wait until I recover from the tetanus shot. The P shot will have to wait for a couple of months later because I don’t want to do all of them so close together.

In the middle of the wasp nest fiasco I had another almost DKA incident last week. I am still not sure what caused it. My blood sugar had been running high I did some injections to correct eventually changed out my pump inset etc. but not the insulin vile I woke up two hours later blood sugar according to dexcom was 389 growing up with Ketones of 2.4. Did a three unit injection right away changed everything out again and started a fresh vial of insulin with 200% basal rate and I managed to get things under control but I felt so exhausted. I did not want to cancel my class that night so I went to teach anyway but really I should’ve been at home resting after all of that. Through that whole time I was having palpitations and I don’t know what was causing it. And then I had them for 2 to 3 days after. I do not think the heart rate thing is just a fluke I think I really have to go back and get screened again.

I was filling my pump cartridge with more insulin the past 2-3 months I think and not changing it every three days as instructed and I wonder if the insulin had started to degrade. Because there is no alarm on the pump to change it. And I lost track. The insulin vial I was using was expired in Sept. . I don’t know but it seems as soon as I don’t have my basal insulin I just go straight into DKA within like two hours which is just horrific. I have not had any problem with insulin vials expiring that rapidly so I’m guessing somehow it degraded in the cartridge and maybe I was sick or something else was going on I have no clue it didn’t seem like anything was wrong with either inset that I removed at first.

I don’t think I can use a lot of those oils because I’m allergic to them and they give me migraines. I do not use any essential oils. If I get really congested I take some guaifenesin and or use sensimist and I also have something to put on my chest that has some type of menthol or something like that that I could tolerate but not too much of it. But I think what I’m going to have to do is use a bowl of water with just boiling water or whatever when I feel worse. I tried the nasal washes again that the first ent told me to do that but they were giving me migraines, which thye always do, lol, but I guess if I get really congested I can do it. Really discouraged that after three doctors they still cannot figure out why I’m constantly having thick mucus in the back of my throat and I have inflammation in my vocal chords and even though the bacterial test was negative I am still having green mucus and blood coming out of my sinuses etc. and a hoarse voice. no one seems to know how to help.

Kind of feel like I still have EBV I’m wondering if I should ask them to test me for that again I was supposed to do my endo blood work this week and go there next week but I think I’m gonna have to cancel because I’m too exhausted to get up early to do it tomorrow. I still have not got tested for Lyme‘s even though I went back to city MD for my elbow and the tetanus shot LOL. I should’ve just done it then. I wanted them to give me a prescription to get it done where I get my other bloodwork on the same day but they said they can’t do that so that means I have to pay another $30 co-pay to go back there to get tested for Lyme. But I just wonder if I should go to an infectious disease specialist, the doctor was kind of suggesting that might be a better idea but it could take a few weeks to get an appointment I’m sure.

In the middle of all of this my father got a bull’s-eye rash or what he thought was a bull’s-eye rash so he went there and they immediately tested him for limes and gave him the doxycycline. I’m pretty sure the Doxy did cause that other terrible flareup I had to. Like you said.

OK so I’m wondering why I go there with an actual tick that I pulled off yet they don’t test me for Lymes immediately and he goes there with a bull’s-eye rash but they weren’t sure if it was really and they tested him LOL. It is Supposed to take 4 to 6 weeks I think for the blood test to be positive. Who knows.

So sorry about for Louis I hope he is OK now yes those diseases are so awful especially for our furbabies. Fortunately none of mine were ever affected even though I pulled ticks off them. Dogs are worse because thye seem to get heart worm alot, its rare for cats.

I had some terrible news from a former veterinarian I took Syb to, he emailed to say that his office had a terrible fire and three of his cats who lived in the office perished in the fire. I have photos of them from when I met them because they were walking around freely in the office and they were so sweet. When I went there there were 4 to 5 tabby Maine coon sisters and an all white cat named Penelope. Only 2 of the tabby girls were there though in the fire. P took a liking to me she was such a beautiful girl. I just feel so awful and devastated to think of those poor babies being so terrified with no way out. They have not found the body of one of the mainecoon girls yet and I’m hoping maybe she escaped, But from the description I read of the fire I don’t know how she could’ve survived that are got out of there. 4 Fire Dept‘s were fighting it and they said there was a lot of smoke and then significant fire when they opened the building, one firefighter was overcome with heat and had to be treated. I hope thye figure out what caused it.

I’m thinking maybe I should get another outdoor enclosure and keep the door in the garage and my studio open to Quinn and then he has pet doors and he could always go out into the enclosure if there were a fire and we’re not home. And I am going to have another electrician come and inspect our box because the one that put my light in and said it had too much voltage on each circuit breaker. But I wasn’t sure if they were just being dishonest or not since another review said they told them something like that and it was a lie.

I’ve been doing a lot more injections to correct lately like you suggested and sometimes to eat. I have to do one now because dexcom says my blood sugar is 172 it’s about 4 to 5 hours after my dinner this always happens I would say like 80% of the time no matter what I bolus. Last night I did one and then I was mopping the floor and blood sugar had dropped from 180 to like 90 rapidly and was going straight down then it was running low for hours after that even with juice etc.

That is good you do that. I would give anything to go back in time that’s pretty much just all that I want to do lately. I don’t see anything to move forward to living this way really it’s just such a misery

How are you? How was your blood sugar and everything? Hope you’re doing well 😊

G2G2 profile image
G2G2 in reply to 000ggg

Glad to hear from you. I was wondering & worrying about how you're doing.

Fortunately, trees haven't fallen. Thanks for asking. We got a ton of rain, but no damaging wind. Grateful to be spared. Been the wettest summer. Michael sent more rain. Relieved you did ok with the latest hurricane. Want to smash the idiots who claim there's no climatic change.

Glad your father's the same. Horrific worrying if he'll, heaven forbid, become worse.

Damn, a bulging chimney. That sounds expensive. How's that repaired? Is that why the roof has to be opened? Homes are such money pits. Our house is being painted. Taking weeks because of the blasted rain. So far, the painters have found three rotted areas (wood siding) while they were scraping. Finding someone to replace these has been a major pain in the ass because the house is really old. Can't buy the type of siding any more, so it has to be custom made on site.

Hope you get the asbestos results soon. Aggravating to wait. Can imagine how you want all this repair crap over already. Since he hasn't sent it off yet, send it to a lab yourself. You can show him the results. He can't deny a written lab test. What kind of floor will be put down? Oh no, now the door & after everything you went through for that!

Nope, you didn't mention the wasps. Eeek! Really, what do cats see that we can't? They'll stare intently at something & we're clueless what's got their attention.

I remember how much tetanus shots hurt. Never heard of anyone getting tetanus disease. Years ago, I was cleaning the wire fire screen. A thick, dirty wire went through my finger. All I could do is pull it out or remain permanently attached to the screen:) Felt quite macho. Didn't get a tetanus shot because how would a fire screen become infected? And it bled so much anything would have been washed out. Tetanus needs a puncture wound. Sucks the tetanus vax also has other disease vax in it. I'll never get another vax ever. I've never had a flu shot. Never had a pneumonia vax either. If getting viral pneumonia twice doesn't provide immunity, getting a vax for immunity is useless. But, bet the shot is for bacterial pneumonia. Have enough autoimmune problems without asking for more trouble. Can also live without the mercury, aluminum, formaldehyde & god knows what other known toxins are used for vax preservatives.

I've used homeopathic arnica cream topically & in homeopathic drops or pills. I've not taken it long term, just for swelling & bruises. Did you use arnica as a homeopathic remedy? I think arnica's in the ragweed family, if you're allergic to ragweed. Sorry about the bad experience.

Just terrible about reflux. Yep, Hashi can cause hoarseness. Guess the doctor didn't think being hoarse is related to your swollen vocal chord. I'm assuming the reflux is caused or exacerbated by the hiatal hernia & reflux causes a sore throat. There are doctors, otolaryngologists, who specialize in the vocal chords. My mother went to one. Turned out her the space between her vocal chords wasn't right so they weren't moving properly. She goes to a speech pathologist who gives her voice exercises. In her case, the change in her vocal chords was due to age. ENTs don't know much about the voice. Though, they should be able to clue in on the cause of excess mucus! Damn, green mucus is the sign of an infection, yet they found nothing. That's perplexing.

Too bad you can't use essential oils. They've saved me from sinus infections, along with salt water in a neti pot when I feel really stopped up. Is a neti pot the nasal wash you used? I use the neti infrequently because I don't want to wash good bacteria out. Think people overuse that. Yea, steaming with a bowl of water & towel works better.

Would you consider a functional medicine doctor? They investigate causes & spend time with patients. It's not take a pill for this, which I hate. I really like the doctor I see. She's smart & listens. Some functional med docs do too much testing at once. Mine tests one group of things before moving onto others. She appreciates people don't have money to throw around. Functional docs are expensive since they don't take insurance, but worth it.

I use these eye drops store.drsamberne.com/produc.... Very soothing. They sting at first, but not bad. Nothing in them that would cause any bad effects.

Your elbow:( Painful, sorry. Have you tried a TENS machine? I borrowed a friend's when I hurt my back & for plantar fasciitis. Works great for muscle & nerve pain.

Oh no, almost DKA. Awful to be that high. Highs wipe me out also so know just how you felt. Does seem that the insulin degraded while in the cartridge, as you suspect. See, I wouldn't be able to navigate a pump because I'd forget to change everything out. All I can manage is to do injections. That doesn't require as much figuring out. Remember reading pump discussions on TuD & not understanding what people were talking about--dual wave, etc.

I have similar issues. Go high & then drop. Lows that take forever to resolve. Any physical exertion causes a drop. I'm still, after 10 years, trying to figure out when to bolus. Seems that whenever I do, it's either too early or too late, even with factoring the composition of meals if it's high fat or almost no fat. The onset of insulin & its duration are not predictable. I've even tried to figure out if where I inject makes a difference. We're further hindered by thyroid meds that make insulin less effective. I've not seen anything that thyroid meds effect the timing of bolus, but I wonder if they do.

I've had bad overnight highs, which almost never happens. Can't figure that out. So, upped overnight basal by only a half unit. You guessed it, now I have lows. We can't win. A pump is superior for basal.

Yea, good to test for EBV activity. Mine was positive for having had the infection (which I already knew), but neg for the virus being active. I was relieved & disappointed at the same time. At least if EBV was active, I could do something to possibly help the autoimmune diseases.

Please let me know when you're Lyme tested. Interesting they tested your father right away. Would have been nice & should be required they test the tick you brought in for Lyme & other tick borne diseases. Would there be an advantage to an infectious disease doctor testing? Do they do different Lyme labs? I know with animal Lyme testing that it may not show up quickly on labs very soon after a tick bite. Plus, all a dog test does is check for exposure, not active infection. A positive for exposure & they're put on doxy immediately for 30 days. Lyme's nasty. So hard to treat successfully because most don't know they've been infected until they have symptoms. Not everyone gets the bullseye rash. With dogs, & maybe also for people, they can continue to test pos for years even when doxy treatment is successful & symptoms are gone.

Lewis recovered completely from anaplasmosis, but has since died. He was such a love & still miss him.

So sad about the vet's fire. Devastating. Oh, those poor babies:( There was a fire at a vet here years ago. A bunch of dogs & cats in boarding died. Great idea to have an outside enclosure for Quinn.

Hope things settle down for you. You've got too much going on. Wishing you rest & respite.

000ggg profile image
000ggg in reply to G2G2

Sorry I havent replied, I was so busy with teaching and not feeling well and the elections etc. I’m glad you were spared any damage, that is a relief.

Yep those climate deniers are bonkers for sure. 😳

I am in bed now because I have a fever, not high but for me enough to make me feel sick. 99.5 and it was climbing, But I took some Tylenol. I’m having a snack even though I was feeling pretty nauseated too. I feel very achy and exhausted and I’m worried this could be Lyme disease I still have not managed to get tested. I am more worried about dying from the flu or one of those diseases than I am about the vaccines honestly. Do you think you got some vaccines that affected your getting type one? I am regretting not getting my flu shot yet already because I’m worried this could be the flu starting, this is exactly how I felt four years ago when I had it when it was beginning. So exhausted With a fever which is going up and nausea and headache and light sensitivity.

I always get the vaccines that don’t have mercury etc. I make sure of that. I think the vaccine is actually for the viral pneumonia, that is why it works as far as I know there is no defense against the bacterial pneumonia except to wash your hands and try not to have a lot of contact with someone that has it.

Think I probably am allergic to arnica because I’m allergic to grass pollens and a lot of other plants LOL so although it seems to help my inflammation and pain it is not something that I should’ve been taking I have been taking pentaprazole and Zantac now for the reflux and I bought all new bras and I think it’s improved a little bit but some days it can get really bad. I took a photo of my mucus spending over a week, LOL, and send it to the ENT but nobody has gotten back to me yet! I am getting bad diarrhea times so I think I’m going to have to switch back to Lansoprazole instead. Are used my humidifier last night and now I’m sick so I don’t know I mean if it made me sick or was already sick who knows LOL.

I am so exhausted I cannot even describe it and I have been overdoing everything volunteering for the election, teaching giving exams, cleaning up after people doing more work on the house. The chimney was pretty expensive and we had the front path done too, The front path was a whole Nother fiasco. I had to keep a huge amount of the money for them to come back and do the job properly because they didn’t bring enough bricks and then when they did that they didn’t have enough sand. LOL so the head guy is still coming back to do more again. . At least he texted me today so I know he’s probably really going to come back. I’m top of that there are these strange little cuts at either end of the long part of the path which are these tiny little slivers of bricks that are at slanted angles I have no clue why they would do that.?

How to get tested or make an appointment with my rheumatologist but it was not going to be until January so I said forget it I guess I should’ve just made the appointment because I’m not going to get an appointment with any rheumatologist for at least three months probably. Then I will ask them to test me for Lyme‘s and EVV and rheumatoid. My elbow is still swelling up and I was supposed to get an MRI but I have not managed to do that I’m really just starting to feel like I want to stay in bed for the rest of my life.

Yesterday was a bad day for blood sugar I was running high for hours and I did not Bolus correctly so finally I took a unit injection only two hours after my bolis before I went to sleep and raise my basal up higher and I woke up with blood sugar is 73 fortunately. In addition I had 2 really bad crashes one before physical therapy, dex showed me at 120 slanty arrow down so I turned off my basal and I was planning to drink some juice but I forgot. I was getting ready to go and all of a sudden it was double arrow straight down I tested it and it was 64! So I had to delay going there for an hour, drink juice and a glucose tabs etc. Then it was running low all day for the rest of the night and then I crashed again at 5 AM..

It’s all so exhausting I mean we never really get a break from any of this. You know I think you really would be a lot better at the pump than you think, I do not pay attention to all of those more complicated things that people talked about at tu. I basically just go by my blood sugar increasing the basil when I need it lowering it when I’m crashing and all of that type of thing- the beauty of it is you can do all of that where as with the long acting basal insulin you are stuck with a huge amount of insulin dropping you down every time you have a bad low.

I had some very bad lows and I would never want to go back to that again. When you start out on the pump you go for training for three to four weeks and then your doctor or your Cde will set up your basil for you in the beginning and they will monitor it for first 3-4 weeks to help you get it adjusted. Then I think for the pump a lot of places require to go to the doctor more often because you have to be monitored more- I had to go for the same amount of time anyway even when I was on injections so it’s not really that different but I see the CDE more maybe.

I don’t think I would go to a functional doctor because I just don’t really believe in that I mean maybe they could help you but I do not have that amount of money to spend on that and I don’t trust that really to be honest. I went to one a few weeks before I ended up in ICU and they basically wanted to me to give them $2000 and I was like all right forget it LOL.

you know what I doubt they would’ve done anything differently than what all my other crazy Doctor’s did so I probably still would’ve ended up in the hospital almost dead. I’m glad you found a good one that seems to help you though that is great. 😊

Has your blood sugar been any better than usual? That is weird that you started having highs did you figure out what was causing it? And yeah I have the same problem- just a little bit more I’m dropping like a rock sometimes. I never know what the Hells going to happen with this, it is just a nightmare.

I was thinking that I should go back to the allergist and get the blood test because I was reading that the scratch test only tells you if you have a severe reaction to something and the blood tests show if you’re having another less severe reaction’s to a lot of things so I think maybe they could help me figure out some of what’s going on who knows but it’s worth a try right?

I really need to go on a vacation I was just thinking that I have not gone anywhere for like 10 years except for the Dr Faustman thing. Since the end of my relationship I have not gone on a vacation anywhere, crazy.

Yes it was so tragic about those lovely babies. I’m still thinking of them. there has been so much going on every week it is just getting to the point where it’s hard to absorb all of it psychologically I think my body starting to shut down from all of this stress.

So sorry about Louis, I’m glad that he recovered at least. So you had more time with him. I miss my Syb so much and I love my babies thinking about them each day and talking to them so I guess I have turned into a crazy cat lady. Each time I change something about the house I am asking Syb and everyone if they approve of what we are doing and mourning the fact that they do not get to enjoy it, like walking on the new pathway. I really miss being outside with my cats and Quinn is completely indoor.

I have not managed to look into getting him the enclosure, that is going to be my next project when I finish painting everything. I think I’m gonna have to get somebody to make a concrete slab outside there because I don’t want it to be on the grass. It would make sense just to make a little patio on that part of the house too. Since all of the concrete paving blocks that were put there by the door are cracked and damaged anyway. Problem is it so expensive and I cannot do anything like that myself obviously.

Yeah I don’t know why they don’t have better testing for people for lymes disease like they do for cats and dogs Kinda crazy Ha? I just hope whatever I have now it goes away soon and doesn’t get worse. I just had visions of having to go to the doctor and the hospital tomorrow. I’m supposed to have a me day tomorrow where I go and get a light treatment on my skin but if I’m feeling this bad I’m not going to be able to go. I was planning to get my blood work for the Endo done on Thursday I guess I should go get the lymes test as well. I’ll just go to city MD.

The past four days or so the contractor that fixed our roof and did the door came back to fix the inside part with all of the drywall that had to be repaired he did 50 million other things too. Sealed the wasp nest hole etc. I was kind of upset that he did not put a plastic radiator cover in my bathroom that I asked him to and instead went to buy a metal one. I had wanted to replace that metal one because it rusted. But the plastic one I bought was not long enough. I was asleep, kind of upset about that but what can I do now. I will have to try and sell the one I bought last year online and buy a longer one maybe and have someone else do it.

Forgot to say, yes I have a tens unit, from all my injuries pain etc. I have not been using it, I should. The pt are doing laser and some tens ice etc. i’m going to look at thise drops. My eyes have been terrible. Do you have dry eye too?

Editing this nov 18th for corrections and to say that I finally got tested. I have a double ear infection, severe sinus infection and bronchitis. My tick test was positive for exposure to erlichia. They put me on the full course of doxy now and I need to see an infectious disease specialist. I’m worried about taking the doxy and reflux. I just wonder when I had it initially and for how long and if it has been and is continuing to damage me and is causing some of my numerous symptoms. I hope you are ok💕

G2G2 profile image
G2G2 in reply to 000ggg

When you reply, could you do it as a PM? Seems it'd be better to have a private conversation.

How's your father?

How's your voice? Still hoarse?

Oh sweetie, sorry you're sick, feeling awful. Your germy students. Weather change messes with our resistance, too.

I don't know if vaccines caused my T1, but not chancing it. I think they're risky. greenmedinfo.com/blog/attac.... Tons out there on vaccine dangers.

How do you make sure flu shots don't contain mercury, aluminum & others? greenmedinfo.com/blog/dirty...

Doubtful doctors have a clue or would tell patients the truth if they knew. I don't worry about the flu or even think about it. Guess tempting fate by saying that:) Fever does what it's supposed to do--kill the nasty.

You collected a week's worth of mucus? Damn, that should've gotten their attention. Such a horrible ride with reflux meds:( Has a doctor suggested surgery for the hiatal hernia to ease reflux? It can be done laparoscopically.

No wonder you're exhausted. Too much, yep. You're so good to be an election volunteer! I'm relieved with the election results. Would have been better to get more Democratic senate seats, but am thrilled with the House results. Cool how many women, women of color, two Muslims & lesbians won & a bisexual from the recount. Eager for FL recounts. And, also for Stacey Abrams in GA. She's incredible. Sad Beto lost, though not by much which says volumes. Feel about Beto the way I felt when Obama spoke at 2004 DNC. I was riveted & knew the world would hear from Barack. Beto has similar fire, smarts & sincerity. Looking forward to voting for Beto for prez. Now to the new drama with Whittaker.

Who do you have to clean up after? Appears there's light at the end of the long tunnel of home repairs. Smart move to not pay in full for the chimney. Hope it's completed now, or close to it. Ugh, everything has to be an ordeal. Did you get the asbestos floor results?

Why do you go to a rheumatologist? Sorry you probably have told me & I don't remember. Oh no, you still have elbow swelling! How painful.

Really, a break from the BG blues would be lovely. Share your frustration & disgust with whole thing. Sorry about your wonky BG. I swear the longer I have DM, the less I understand it. I've had more crazy inexplicable highs. Had 188 before dinner when I hadn't eaten anything for 6 hours. Basal insulin was fine & a new vial. Bolus also working fine. But, that was nothing compared to 325 (my worst ever) out of nowhere. No idea where that came from. Like you, I eat pretty much the same things. I've raised basal (hasn't helped) & also bolus. Sooo sick of the rollercoaster. Wiped out. Makes me not want to eat. I've said it before--if you don't have an eating disorder before diabetes, you'll end up with one after diabetes.

Thanks for your confidence in me being able to handle a pump. What's a CG? Being able to adjust basal's a huge benefit. I figured everyone did the dual wave & other stuff because Tu talked about that all the time. Honestly, I got sick hearing about it. Had to read everything as an admin. Well, everything that was in my assigned section for that month.

What I like about functional medicine is it looks for root causes, unlike regular docs who treat symptoms. Understand your reluctance after that experience. Damn, $2000 upfront! Who could afford that? Greedy bastard. I'm lucky mine isn't like that. She's understanding about costs. Love her. She's nice & helpful. I had a stool test months ago for infections, parasites, bacterial imbalance. My doctor said I had to send $265 with my sample. Said the lab would accept whatever insurance covered. If insurance wouldn't cover anything, I only had to pay $265. Nope. Got a call telling me send an additional $250. Evidently, the policy had changed. When I told my doctor, she called them. They wouldn't give a refund, so she charged me less than half for the office visit & gave me a $25 mineral supplement free. How sweet is that! I see her every 3-4 months, so she's not pushy about getting office fees either. Wish you had someone like her. She's also great about not doing a slew of expensive tests at once. I get one group of labs done & then she moves on to the next. She gives me samples of supplements to know if I can handle something new. The supplements she recommends I can get through her or most anywhere that sells professional supplements, so I shop for a cheaper price. Usually, there isn't much difference.

I've also heard the scratch tests are pretty useless. You could save money by doing an elimination diet for food sensitivities. You start with the most common allergens eliminated one at a time--gluten, eggs, dairy, grains, soy. That's easy. I've heard that the other allergy tests aren't terribly accurate either. All allergy tests have 50% false positives. Not helpful. A good start that you already know about grass pollen & certain plants. Everyone has reactions to dust mites & mold, of course. Do you think it's environmental?

Yes, plan a fun vacation! You so deserve a break. If you could go anywhere, where would you like to go? I love traveling.

Your poor heart's still broken missing darling Syb:( Sorry. I can barely think of my babies who are gone, some for long time, without breaking down. Just rips our insides out. I'm afraid that if I start crying, I won't be able to stop. Know what you mean it all being too much & too much at once & shutting down.

What's the light treatment for your skin?

At least a metal radiator cover reflects the heat. Mine are just exposed (they're tall, long, old fashioned radiators), except one I had made when a bathroom was redone. Wish I could afford to cover them all.

Great you're getting laser treatment. Is it helping?

Oh no, ear infections, bronchitis, & a sinus infection. And, ehrlichia! No wonder you feel awful! So sorry:( My heart goes out to you. You probably haven't had it long or you'd be even sicker. Crossing everything doxy doesn't cause any reflux problems.

Hope you have a lovely Thanksgiving.

000ggg profile image
000ggg in reply to G2G2

Ok, will pm you, have been so busy, not sure if I can see your reply from a pm.

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