I'm eating spinach, beef, eggs, molasses, cocoa, dried fruit, etc every day, I'm getting b12 shots every week, and I feel like it's just draining right out of me..the b12 shots pick me up for about 3 hours then it's gone...my periods are very heavy..but my doctor says I'm no longer anemic. I get to the point where I can't lift my arms, stand, or talk without starting to black out..I gasp for air..I sleep 2/3 of the day in 4 hour shifts..I don't shower for 4 days at a time because I'm too exhausted to get out of bed, and when I finally manage all I can do is let the water run over me, then lay down on the bathmat for an hour to recover..I'm bruising, my hair is brittle, and my skin is pale tinged with yellow except for my legs which are bluish purple..the whites of my eyes have been jaundiced straight since summer..I can't feel my legs or hands except for deep pain...I'm prone to mood swings and loss of interest..I feel like the life is draining out of me, and even if I were revived I'd come back to a body damaged by unnecessary surgeries and misdiagnosis and that I'll never have the life I wanted..but my Dr says I'm no longer anemic and iron tablets are too risky..I'm sure I'm just ranting but I feel like I've been on a roller coaster for years and I just want off..
I feel like I'm trapped in anemia: I'm eating... - Thyroid UK
I feel like I'm trapped in anemia
you can take b12 dissolve tabs under the tongue over the counter order online that are great....my son still takes every day...., have u been tested for hypothyroid?has your d3 levels been tested.....deficient will make you sooo tired
Ooh b12 sublinguals triggered some really bad reactions for me...hypokalemia and other things. That is a very long story unfortunately. It was very bad. This was while I was taking a ton of supplements under a functional MD's care. I still don't quite understand.
I get weekly b12 shots now, and tolerate them ok, but they took a looong time to make a difference, and the energy boost only lasts a few hours then I'm right back where I started. Like literally 3 hours then it's gone. Some of my sensation has returned though, but it's very slow going.
The side effects of the b12 are starting to creep back, and I wonder if b12 repletion can induce other deficiencies, not just potassium, but maybe b5 or iron as well?
I was super deficient in D and take a daily D3 5000IU but I don't feel anything from it.
I have Hashimoto's but my doctor says I'm no longer hypo and my numbers are right where he wants them but feel no difference and my thyroid is often very painful.
Please do not buy any medication on line. You do not know what you are getting
Unfortunately Annde, a lot of us are forced to source our meds online.... i work on the principle that the sellers make their money from repeat orders, so they probably donT want to kill me... And if the meds were not doing the job I wouldnT buy more.
Have been buying online for about 12 years now, and so far, so good... obviously i donT use the sites which make fantastic claims....
g x
Maybe you need another form of B12. Sounds like very serious under methylation. If that is not ruled out then on phoneixrising forum one can find similar stories.
Please don't give up I too had those symptoms but less severe,why are iron tablets dangerous that's ridiculous .at last I feel human again I take b12 1000 mug also good iron tablets also take sea kelp for hair and nails also bottled water to get rid of fluoride .the iron will help please persevere this will help I promise good luck x
Iron tablets most certainly can be dangerous. Until a few years ago, iron tablets were a significant cause of childhood poisoning in the USA (the tablets were often sugar coated and looked like Smarties). Even multivitamin tablets can contain enough iron to be dangerous.
nlm.nih.gov/medlineplus/enc...
Excess iron is at least as bad as iron deficiency. Whether that is from excess supplements or haemochromatosis or whatever else.
Ideally, anyone taking iron supplements would have regular blood tests. Supplementation may well need to be adjusted as the iron levels rise.
iron can be dangerous but the main danger is to children from supplements. However you are v v sick. What is your haemoglobin level now and what is your serum ferritin level? In view of the jaundice, what are the liver function tests showing? There is clearly something v wrong, but is it a secondary condition, not the pa or aitoimmune gastritis?
Yes thank you. I'm pretty sure I gave myself some iron toxicity as a teen in my desperate attempts to supplement. My symptoms (restless leg, pica, pallor, breaking hair/skin) didn't improve either.
I was tested negative for hemachromatosis nevertheless my doctor specifically told me he wanted me to avoid iron supps. He does supplement some patients and monitors their blood. Still, I feel like I'm starving for iron.
I suffer from a genetic condition called Gilbert's syndrome, which I was always told by doctors was asymptomatic. However I discovered in the last few years that it can lead to periods of jaundice and extreme exhaustion. My vitamin D levels were very low and after supplements to raise my levels within normal range I now feel much better although I do suffer from fibromyalgia sporadically. I also use a 5-hydroxytryptophan (5HTP) supplement to keep my serotonin levels up(as Gs sufferers can break down serotonin twice as fast as normal) and I use magnesium oil spray on my skin which has reduced my muscle pain almost completely.
Ah, I've heard of Gilbert's but my doctor never mentioned it. It doesn't make sense to me that it would be asymptomatic!
I haven't been jaundiced all my life but some of my earliest memories are of noticing my hands were pale and grained like marble and my joints were red and swollen.
I'm chronically low in magnesium and use Epsom footbaths.
As a research chemist I have done a lot of reading in the scientific literature into what is known about GS. Basically between 10 and 20% of the population have mutations in one of their liver enzymes that helps the body to breakdown and remove both normal body breakdown products and toxic compounds or drugs. Usually this only presents a problem in new born babies, who become jaundiced because they cannot breakdown bilirubin when their fetal blood is changed to adult blood. I was diagnosed after suffering from glandular fever in my late teens, when a blood test showed that I had extremely high levels of bilirubin. Since then my bill levels have varied between normal and high. I have had periods of good health, and spells of up to several years of severe fatigue and chronic I'll health. I now have fibromyalgia and chronic migraines. My migraine are kept under control by botox injections, and I have found that the best way to keep my health on an even keel is to avoid all medication whenever possible. My liver is definitely not able to metabolise antihistamines, paracetamol and many other painkillers efficiently, and I definitely need to take vitamin D supplements to keep my levels within the normal range.
So it makes you very sensitive to medications? I'm sometimes quite sensitive. My SSRI withdrawal was insane.
That's awesome you're a research chemist! It must be helpful for learning about this.
I feel I definitely am jaundiced, although people rarely comment on it. I'll see my doctor next week hopefully.
Has your ferritin level been tested? If so what is it? Has your vitamin D been tested ifso what is it? What B12 test did you have?
Go to the doctor and politely request a printed copy of your test results. Take a pen and piece of paper with you as you have to do it in writing. If the receptionist is unhelpful point out that it's your right to have a printe.
Hi Allyson
It seems like you're being badly let down by the NHS. i would recommend putting all your symptoms in writing to your GP along with a request for a full range of blood tests including full thyroid panel including antibodies, cortisol, iron, ferritin, B12, vitamin D, folate. Get a print out of the results and post them here for help from list mates. I would also be demanding a referral to an endocrinologist.
If you can afford it, it may be worth investing in a private doc who will try to get to the bottom of your illness.
What thyroid meds are you taking??
None, actually. My doctor has not wanted to put me on any. I am taking some supplements: iodine, d, b12, and a certain amount of iron-rich and selenium-rich food every day.
Ok sorry I'm not a doctor but a lot of your symptoms are very much like hypothyroid, my blood tests were normal for years but I was very hypothyroid, with not much T3 in my tissues/cells I felt like my body was shutting down, a lot of your symptoms are similar to what I went through! If I were you I would find another doctor! Hope you manage to get this sorted! Xx
I do tend to suspect that too...at my last appointment my doctor said I was no longer hypo, but really, the symptoms are still largely there, although occasionally I will feel like I'm going a bit hyper. I'm trying to educate myself on it now..I know what you mean about shutting down, sometimes I feel so exhausted the ground could just swallow me up
It affected my whole digestive system and bowel function greatly! I was diagnosed with all sorts of other diseases and given drugs for these but it was undertreated thyroid problem all along! I am recovering now but it's a long road to repair the damage done by incompetent medical people! But then I suppose they are restricted by the pharmaceutical industry who dictate what they can and can't do! It's a sad corrupt world we live in!!
Yes, isn't it. I've been symptomatic since childhood but it was always blamed on me, or I was given boatloads of psych meds.
I keep thinking of a meeting with my pediatrician when she mentioned my thyroid and iron tests were abnormal, and "to eat more meat". If only she had figured it out then. It makes me sad since I was a frequent flyer in her office as a kid, and still it didn't register
I had endometriosis surgery, but was still in pain, but was told it was all in my head. During that time my bowels worsened, but the gastroenterologist just said it was IBS take antidepressants end of story.
I feel like my early life was a dream and I've woken up in the twilight zone somehow.
This is only a suggestion, based on my experience. I had problems digesting Iron tablets, and I was told by a friend to take the Holland and Barrett Radiance multi-vitamins and iron, which seemed to be more easily digestible. Also she told me to have milk with chocolate at night, and orange juice to help digest the iron. It worked!
If your major problem is with heavy periods, please ask to see a gynecologist. You may need to have the uterus checked out. Ultrasound. Among other things, there could be fibroids.
I've seen dozens of gynecologists😒 most recommend depot lupron, BC, or antidepressants. I have endo and lost an ovary to a cyst very young and do suspect fibroids or adenomyosis. I'm considering another ends surgery but my endocrinologist advised me to wait and see if it improves with my thyroid. I doubt it will though.
Oddly enough, when I started methylcobalamin and methylfolate, my bleeding and clots increased hugely for a time.
Re heavy periods that can be hypothyroidism too. I had a hysterectomy in the end as mine were so bad and I had completed my family. My uterus was healthy and I bitterly regret going down this path as it's caused more problems that it solved. I had a tablet prescribed for heavy periods, it wasn't the pill, it was something ending with acid, I'll try and look it up. It worked like a dream, that way you can build up your iron store. Also look at Vit D being low in that can make you feel terrible. I take 5,000 MCG sublingual methylcobalamin, it's supposed to be the one that is easily absorbed. You need good levels of Folate to use the B12, I suspect yours may be low. Also you need other B vits, so take a good complex.
Re iron, you must take vitamin C with it to aid absorption, keep it away for a good few hours from Vit B12 when you take it.
Give up coffee and tea as these both deplete iron absorption. You can take quite a lot of Vit C anyway as it's water soluble, it will help you absorb iron from your foods.
Get an adrenal stress profile done, are you on thyroid medication? Get your results from blood tests in a print out. Being bottom of the range is not good enough.
I've been where you are, I was so weak and breathless, I couldn't walk and talk, and needed to rest every few yards. None of this changes overnight, so in the meantime be kind to yourself, it looks like you're getting good nutrition, so keep that up, the more animal products you eat the more Vit B12 is getting into your system.
Are you taking any acid lowering drugs that could compromise your absorption?
Don't let your doctor get away with anything, take relevant printed material, you have no idea how little they know about anaemia, thyroid B12 etc etc, it was a relevation to me to see their faces.
Thank you Helcaster!
I'm sorry about the surgery, I can relate to bitter regrets like that I wish I could offer some comfort.
I do have a lot of digestive problems. My absorption was pretty shot for a long time. it was bad. Of course the gastroenterologists just recommended antidepressants! I would bloat after any meal, sluggish digestion, heaviness, severe pain, constipation and diarrhea together..my doctor diagnosed celiac and SIBO and lactose intolerance, and I'm gf and lactose free and limited carbohydrate..I think I must have some messed up gut bacteria though. I'm constantly hungry now, but I can't eat too much of anything without problems.
My vitamin D was very originally low and I've been on daily supps several months now. Oddly, my folate was high, perhaps due to gut bacteria overgrowth.
2 years ago I was put on methylfolate and methylcobalamin, and reacted really badly. My potassium seems to go low, and my skin erupts and I get migraines, etc. I get cyanocobalamin shots now, but they work very slowly. I've been getti,g them for several months now and last week was the first time I could actually feel the needle. The energy boost lasts maybe 3 hours, then I'm laid out again.
I'm not taking any antacids, but am on metformin. I know that depletes b12. My doctor says the weekly shots should be plenty, but still I feel like I'm missing SOMETHING.
Did you tolerate methylcobalamin well?
I guess I am finding it hard to be kind to myself because it's taken so much of my life and I feel so upset about permanent problems from prior care. I imagine everyone here has those experiences though..
Hi Alyson, I took metformin when my B12 was already low, and then when I should have had B12 injections I just had 50 mg of cynacobalamin prescribed a day. Cynacobalamin is used for people who are vegetarians, that's my understanding. It didn't raise my B12 levels sufficiently, it was a ridiculously low dose anyway, and now I have nerve damage in my feet and lower legs. I inject methylcobalamin because it's supposed to be absorbed more readily, and it's the only one that doesn't have acetic acid in which kills my bladder ( I have interstitial cystitis) I can hand on heart say I have never had more energy, plus the nerve pain hasn't improved ( too late I think) and I was injecting every day. I definitely tolerate methylcobalamin fine. I haven't had an injection for 2 months now, and have noticed my stamina is really poor again, and I'm getting breathless. Whether this is because I haven't been able to take my iron due to anal fissures, or whether it's because of not having the B12 injections I'm not sure. I have been using sublingual methylcobalamin though when i remember. I really struggle to feel an improvement on anything, even thyroid meds
Have you had any tests for adrenal exhaustion? I seem to remember something about high or low potassium as an issue. This has been my problem all along, I've had two adrenal stress profiles done, and my cortisol is extremely low. I was fainting every time I washed my hair in the shower, or any slight physical exertion. I'm taking hydrocortisone full time now, I have reduced the dose, but I can't go below 15 mg or I start fainting again. HC is the only thing that has stabilised my temperatures, and I suspect it's helping the diarrhoea too.
I've had chronic diarrhoea since '98, and have had all the usual tests. I know a lot of people have gut issues with hashimotos. Mine is just starting to improve, I no longer have to take codeine just to leave the house, but I always have it with me! Mine has been so bad I now have a prolapsed rectum from all the straining. This is the biggest issue for me at the moment as I keep getting fissures which are so painful. I've found taking magnesium with good doses of vitamin C has helped.
I too live with the mistakes of prior treatment and it can be so hard to deal with. I had a really long period of feeling very angry, and mourning what I have lost, but you have to find ways of dealing with it, or it just eats you up!
Sending you a hug. Xx
Oh dear you've been through so much!
I think I can almost feel the metformin sort of drain the b12. I have a lot of nerve damage too. The cyanocobalamin didn't make any difference for several months, and even then, only for a couple hours. It was like my feeling was turning on and off. I'd get a shot, and three days later, could sense my clothes against my skin. But almost as soon as I noticed the sensation I'd go numb again.
I noticed my b12 deficiency symptoms would worsen with each dose of metformin. It was like I couldn't make headway with just the weekly shots.
It's been about 9 months on the cyano shots weekly and I definitely have had some sensation return. However, I think I still needed more than I got.
Personally I think I like hydroxocobalamin the best. I do hold out hope for lots of nerve healing. I hope it gets better for you too! In the early liver treatments, people were near death and nearly paralyzed, and they healed a great deal, so that's something.
I suspect the methylcobalamin and methylfolate may be more available, but that uses up other nutrients too, and if a person is not absorbing well, it's setting up a real problem. I'm pretty sure I became hypokalemic on the methyl forms, and based on other symptoms I suspect low b5 and others too. I was an absolute mess.
My endo said my adrenals were operating at about 50% because of the malabsorption. Any little effort, even sitting up, would set me off in tremors that radiated from the area of my adrenals. I had no reserve of energy. Now it is better though.
Interestingly, my endo said the low adrenal function led to low sex hormones, which caused the interstitial cystitis, because sex hormones keep the tissue supple. I'm not sure how severe IC was for me, but then again I was constantly guzzling water because of high blood sugar.
I had chronic diarrhea too, but only for a few years. It got better with strict gf, lactose free, no sugar, and probiotics. I think I've had some fissures too, but they are mild.
It's like we have the same core issues!! I keep meeting others with this list of problems.
I really do think my endo can put the pieces together in a way that most doctors don't, and I doubt he misses much. But still, even he says most doctor's don't know this and he has had to learn it on his own.
I'm probably rambling but thank you so much for your support and hugs to you too!
I was on metformin for two years Allyson, I was already on cimetidine one of my IC treatments, I had developed psoriasis in my armpits right out of the blue, the dermatologist did a blood panel and said my B12 was low, this was before any medication! My doctor decided after 2 years I wasn't diabetic??
I took cimetidine for 13 years for my bladder along with hydroxyzine. Cimetidine lowers acidity, although it worked OK for my bladder I suspect the low stomach acid just made my anaemias worse, I was also told that cimetidine, because it affects liver enzymes, it stops thyroid meds from being absorbed. So I told my GP I was going to wean off cimetidine and I wanted to treble the dose of hydroxyzine ( which had given me some life back with my bladder) so I did this over a few months and it was such a bumpy ride with bladder pain and spasms. I thought I would hang on until the hydroxyzine was in my system at the higher dose. It has worked out OK, although I do get bladder flares, I'm in the tail end of one now, but nowhere near as often as before. There isn't a pain killer to touch this pain and I've tried oxycontin! I took 2,000 mg of gabapentin yesterday and still waited 24 hours for some relief. For me it's like labour pains, it goes down my legs, up to where my kidneys are, in my rectum and vulva. My vulva feels like it's being carved up by hot razor blades. I have a bidet and often I have to pee in warm water to lessen the pain a little. I think I've wasted 4 years of thyroid meds because of cimetidine!
Re B12 I've been injecting myself for 2 years now, and haven't felt a thing. I get methylcobalamin via a B12 charity. I've tried others but they caused acute pain in my bladder for over a week, with spasms too, acetic acid that's in them is like vinegar and it's on my list of foods that cause bladder pain, so I'm pretty much stuck. Flavourings in supplements kill my bladder too, but I have found Natural Factors methylcobalamin has no flavourings. I also take Vega non acidic vit C, it's the only one that doesn't cause pain.
My IC was a result of an UTI I had after surgery, it was neglected, although I told staff I had cystitis, my urine was never sent to the lab. A month later I had a haemorrhage and an emergency admission where the infection was found. By then my bladder was permanently damaged, it's been hideous the way it's messed up my life. I had it stretched to break up scar tissue, which has helped.
I'm low in DHEA too, so I do take that occasionally, it's supposed to give your sex hormones a boost. I lost all my pubic and armpit hair my adrenals are so bad. I have noticed though since HC that I have the odd hair growing, but don't hold out much hope it will all come back.
I can't believe you're not on thyroid meds with your symptoms. Did you ever have a full thyroid panel done, or just a TSH?
Hugs.
Wow, I can only imagine how difficult the bladder problems have been for you! And that they didn't can't the infection in time!!
My bladder problems started after a left oophorectomy age 14. It was mostly constant urgency, difficulty initiating a stream, and basically going a tablespoon at a time, every 5 minutes. It wasn't terribly painful, more just pressure and didn't respond to the IC diet that I could perceive. But I do get the labour-like pains, and kidney pains, and vulva and rectum pains, especially around my period. I bet I have a lot of endo around there.
Lately my bladder area just kind of burns and feels full. I can't tell if the pain is in my uterus or bladder really.
I hope the DHEA helps!
I got a thyroid panel last spring I think, I'll have to see what I have.
Hi Allyson, it does sound like your bladder is angry at the moment, that horrible constant burning and feeling full is a giveaway! I find when my pain is bad my tummy swells like I'm pregnant. I started with urgency, frequency and pain. The urgency meant I often started to pee before I got to the toilet, frequency was every 10 minutes day and night. The pain made me suicidal, it was absolutely non stop, I often was housebound for weeks at a time. The most helpful drug I have found in hydroxyzine, it's an antihistamine that helps to prevent the high histamine caused by the increase of mast cells in the bladder. Within 2 weeks I started to feel like there was hope of getting some life back. It took ages to get diagnosed and I had to research an urologist who is an expert in IC. The IC diet I have found to be really helpful. I drink 90% still mineral water to avoid the chlorine in tap water, I also filter all my cooking water. After 10 years of just water I found red bush tea is non acidic and no caffeine, I tolerate really well. Citrus and berries are the worst culprits for pain for me, fresh tomato, tomato paste, obviously vinegar, alcohol, but I do tolerate a half pint of real ale these days, but it really is only one drink in months! Pears I don't have a problem with and more recently I am fine with really sweet apples. I just can't eat any of the above as it causes days of pain and just not worth it.
I've learnt that pelvic surgery can be a trigger, my urologist thinks it's an autoimmune disease. I believe it affects more than your bladder, my bowels got really bad at the same time. People I have met who have had their bladders removed, some still feel pain, I think it's more systemic that we give it credit for. I'm sure you know all this but fibromyalgia, migraine " IBS" can all be linked. I've met and also have contact with women with very painful sore vulvas too. I had really bad skin loss on my vulva and inside my vagina when IC started, it was so bad I couldn't wear trousers for two years.
The frequency I have learnt to cope with with some bladder training, although in a bad flare that goes out of the window. Gabapentin helps pain, and also frequency as it does numb the nerves in the bladder. I urge you to give hydroxyzine a go if you haven't already.
I got a lot of help from the COB Foundation (UK) there's also a forum which has been amazing when I've needed it!
Yes dig out any blood test results you have, the people on this site are very knowledgeable.
Hugs.
Allyson, the drug I took for heavy periods was Tranexamic Acid, get this prescribed without delay. I had no problem as my GP suggested it. I was wearing 2 maternity pads mine was so bad, and this drug stopped the flooding. This is your starting point on your path to feel a lot better!
Hmm that is interesting, I had not heard of it, thank you!
Hi
I took both mefanaemic acid and tranexamic acid together. Apparently the practice then was to give both. My daughter however did have an asthma type reaction to mefanaemic acid but uses tranexamic acid. Also I found saying 'very heavy bleeding' to a male doctor did nothing but after using a moon cup which collects the blood you can tell them how much you have lost. I found I was losing a normal persons amount of blood in about 1 hour! My periods after starting on levothyroxine were 'normal'.
Hope this helps.
Sue
I think how the Tranexamic tablets work is to aid blood clotting. They worked very quickly for me. I was having flooding and huge clots and my periods were so painful I used to vomit I wasn't diagnosed with hypothyroidism at that time, it was missed for 20 years. I get so angry that a perfectly healthy uterus was removed.
I'm sorry you've had similar experiences, they are often very hard to live with.
You are going to have to ask your doctor for copies of your blood test results including the reference ranges. Without them you are just floundering around in the dark, and so are we.
Have you ever had a complete set of iron tests? To know as much as possible about your iron status you would need to have the following tests (that I know of) :
Full Blood Count (in the UK) or Complete Blood Count (in the US)
Serum iron
Transferrin saturation
Total iron binding capacity (TIBC)
Ferritin
There are some other measures than can be made, but I'm not familiar with them myself. This link is well worth reading and summarises the things that can be tested and are relevant to several different kinds of anaemia :
irondisorders.org/Websites/...
And this site is well worth knowing about when looking at blood test results :
In the UK : labtestsonline.org.uk/
In the US : labtestsonline.org/
I wonder if your problem is low blood volume. If you are losing lots of blood with every period, then your blood volume may have dropped substantially by the end of a period, and maybe your body can't make up the shortfall between periods. I've never heard of blood volume testing being done in the UK, but it can be done in the US. This was the first link that came up :
my.clevelandclinic.org/serv...
If it is available in one place there may well be other places offering the same testing in the US.
Just found this description of blood volume testing :
"There are two methods of which I'm aware. One is done in nuclear medicine departments of hospitals. A known volume of blood is drawn, and is labeled with a radioactive isotope. The blood is put back in and allowed to mix with the blood in the circulation. Then another blood sample of known volume is taken, and the radioactivity measured. By evaluating the ratio of the radioactivity in the original, labeled sample to the radioactivity of the sample drawn later, it is possible to calculate the total blood volume by multiplying this ratio times the volume of the first blood sample. There are two variants of this. One is used to measure total red blood cell volume, and the other to measure the plasma volume.
The other approach uses a dye rather than a radioactive tracer, and the dye is measured with a spectrophotometer. The same type of ratio calculation is done."
Source : forums.phoenixrising.me/ind...
It looks like it is a very specialised test.
Allyson, going yellow/orangish is actually a hypothyroid problem. I think your doctor is wrong about you no longer being hypothyroid (if that's really true, it won't last long, given you have Hashimoto's). Did you ever manage to get your mitts on your thyroid blood tests?
I suspect the reason that B12 and iron aren't making enough of a difference is because your thyroid needs some help.
My doctor did not want to put me on thyroid medication, he said the Hashis was mild and the nodules should shrink down with iodine and to give it time. He's weighed a lot of considerations I don't fully understand. But still, I really do feel awful and my thyroid is inflamed and often painful.
My last test was t4 free, TSH, TSH receptor AB and FT4 and urine iodine. and my doctor said he was happy with the numbers, but my inflammation is high..
FT3 2.1 (2.1-4.0 pg/ml)
T4 free 1.14 (0.77-1.60 ng/dL)
TSH 1.20 (0.34-4.82 uIU/mL)
I really don't know enough to judge lab results..
Oh Gosh Allyson, I do not have a lot to add to the excellent advice you have been given here. I would suggest you get another doctor though. From my unqualified point of view the yellowing is jaundice which suggests someone should be testing your liver enzymes and the tiredness could be hypothyroidism as well as anemia. Surely a competent medic could put all this together, or fix the problems one by one.
When I first had thyroid cancer (before I knew it) I had that exhausted feeling. I had to go out and buy materials for a job site. I would get in my jeep, drive round the corner from the job site and sleep for five minutes before I could drive to the store. I would pull into the parking lot, sleep again for five minutes before I had the strength to walk across the parking lot into the store. Having bought the materials I would have to sleep again before driving back to work. Yes, it is awful and I really feel for you. Get another doctor, show him/her the letter you have written here, this will not be the first time he has heard something similar if s/he is any good at all. Please let us know how you get on, this is one of those posts that will haunt me.
Oh dear, I started to reply yesterday but gave up and took a nap halfway through! I know a couple of other people in similar situations and they had thyroid cancer too. It's amazing you were out at job sites while suffering that! I had biopsies come out negative.
I really do think my doctor is a good one, and most others just told me it was stress. It looks like my doctor is testing my liver enzymes, and in fact they were last a bit low. Even going back a few years they look low.
I think I'm yoyoing so much with my period, it drains the life right out of me. It takes a week of my period and a week to recover, then I'm more lucid for a little. But I never really have much of an energy reserve, every little thing wipes me out.
My doctor was adamant I could trust him and that he's looking into everything, and it would take a long time to get better but still, I'm not really functional, and the cognitive changes are brutal
Your words are very kind and helpful!
I wonder this, but my experience with methylation functional doctors was a nightmare, to put it bluntly. I ended up worse. I wonder so much but have no concrete answers as to why my experience was so bad.
If I look into it on my own I just end up going in circles. There are so many competing claims out there, and conflicts of interest. To be honest I couldn't really find success stories, just people in the same boat.
I tolerate cyano ok, and hydroxo is a little worse, and methyl is excruciating. I am homozygous a1298c, and my homocysteine has always been normal for what it's worth.
Allyson,
First let me say I'm so sorry to hear about how horrid you're feeling. I, too have been anemic years ago while suffering a severe Staph Infection in my lungs. Somehow, I contracted from someone on a plane to or return trip or while in Mexico for 10 days.
My body developed Self-Absorption and started to feed off of itself. I went from about 115-120 pounds down to 89 pounds! I looked like a walking skeleton yet somehow, I worked anywhere from 8-10 hours daily then go home and almost collapse. It seemed no matter how much Iron I was ingesting and with what, nothing worked only got worse.
My doc had me see a litany of several specialists from blood disease specialists to Carcinoma Specialists who performed a spine tap..which was a bit painful to both an Endoscopy and Colonoscopy. The other tests included stool samples, urine samples and endless other type of tests. I was also diagnosed as possibly Celiac and put on a Gluten-free diet for about a month until all tests came back negative for this disease.
During this entire illness which lasted over a year had given me a cough which occurred mostly at night during sleep plus spitting up phlegm which was colored greenish and tinged with brown and a bit of blood. It seemed no matter how many times I asked the specialists if it could be something related to my cough, they all would adamantly say "NO, it's NOT"!!!
So, out of sheer frustration and tired of being poked and probed, I went back to my Internal Specialist who happened to be my GPA. We discussed my case at length and the lack of finding what was wrong with me. We also went over all my tests and how my body and vitals were only getting worse. My body and certain organs were slowly starting to shut down. I told him I knew this meant death for me and asked if I was correct and he sadly nodded his head yes. So, I wearily asked him if this meant I would soon perish if nothing was found and he again said yes. While hesitant to undergo more tests only to find no solution, I myself knew what had to be done so I finally told him I wanted to see a lung specialist immediately and the best one in town regarding my cough and symptoms.
Well, within the same week, I found myself at this latest specialist's office wondering if this would be my saving grace. Well, after another long list of tests, from breathing to oxygen-blood tests, blood work, sputum/phlegm samples and finally having a scope put down my nose into my throat with biopsies of both lungs plus pictures from the microscope down there, the test results came back. I was diagnosed with a severe type of Staph in both lungs. He said both lungs looked like two extremely dried up sponges and in fact, in all his career had never seen anything like it. He right away put me on the strongest antibiotic on the marketplace which at that time just happened to also be the newest, Levaquin. I was put on two months worth just about and finally, my body started to react in a positive manner. Little by little my weight started to go up, my energy level as well. It took months before I could actually say I felt much better but I was just grateful to be alive.
What I guess I'm trying to say, is don't just stay with one doctor if you're still feeling horrible and hardly able to stand let alone walk. If you are unable to research for other or at least an extra doctor, have your family or a best friend help you. Not all doctor's are familiar with everything that ails us nor familiar with the latest in tests or diseases. Your Iron deficiency may be a reaction to something else you are or aren't taking.
The jaundice is clearly an issue and should be looked into and the color of your legs and swelling also require immediate attention! Not to scare you but only to hopefully help you realize that sometimes it takes being seen by more than one or even two doctor's.
I can't remember how many I saw and how many tests of all types I had to undergo. But, if I had listened to all the doctor's who argued with me and told me my cough had absolutely nothing to do with my illness, I would be dead and buried over 15 years now! Please, don't give up no matter how weak and tired you are. Your life is definitely worth fighting for. Plus, regarding the extremely heavy periods. I underwent a very simple
D&C of my Uterus and this helped me wonderfully. I once had to change my pad three times in one half hour and then before leaving to work on one specific morning. Since, I was still of child-bearing age, hysterectomy wasn't an option for me and simply increasing my Iron wasn't going to help my low iron level. This is an out-patient procedure in which the doctor goes in and performs basically removing a lining of the Uterus which helps to reduce the heavy bleeding, clots and also long period cycles.
You can look up the procedure. It's much easier on your body and except for a few cramps for a day or so, you'll be up and around like normal in no time at all.
Allyson, I truly wish you the best and God bless you.
Thank you so much, and you have such an amazing story. I'm sorry you had to figure out so much on your own! It sounds like you might have had anemia of chronic disease mentioned upthread?
I do struggle with constant sinus infections and yeast infections. My early life was like one long cold, I was on antibiotics every other month. My doctor has me counting carbs and not eating sugar, which helps some. Did you take probiotics?
I am scared for a D&C, concerned it would leave scarring? I may have adenomyosis or fibroids.
Oddly enough, when a functional MD started me on high dose methylfolate and methylcobalamin, it really increased the bleeding for a few cycles. Drastically so.
Thank you so much, I hope you are much better!
Thank you Allyson,
You're definitely right about having so to learn so much on my own but we are the keepers of our own bodies and we know when something isn't right and or when something isn't going as our doctor's hope or planned. The anemia back then was for me the least of my concern but certainly one which affected me in a large way. How I ever managed to work long hours, keep a home, take care of a husband, a dog and entertain and still be able to somehow stay alive..I will never know!
I've worked in the medical/healthcare field since I was 19 years old as an office manager, insurance biller and coding and accounts receivable's. During the close to 30 years in my work, I have known and worked with some fabulous doctor's, specialist's and therapists. They all helped me to learn we are each responsible for our health in more ways than one and for that I have always been grateful!
Regarding the D&C, you may want to research or speak to a couple of OB/GYNs' but scarring was not something any of my docs ever mentioned. I too suffer from fibroids and adenomyosis as of just recently. I am going to be scheduling a hysterectomy in the near future.
I certainly hope that you are able to find the best solution for your health issues but just don't give up..sometimes it may happen that right before you're ready to throw in the towel.... a saving grace happens into your life and in time makes you wonder and realize just how close you came to giving up. Take care and hope to hear you are feeling better soon.
have you thought of checking your intolerances/allergens and changing your diet accordingly? my daughter is going through a total diet change at the moment. it's not easy but having been tested,she can now focus on the foods that suit her and don't cause inflammation. she's trying to heal her gut which in turn should help heal all of the other symptoms of Autoimmune diseases. it's worth a try. allopathic drs just look at symptoms, have you tried consulting a Functional medicine dr????? there's so much out there that needs understanding and allopathic drs don't give autoimmune the respect it deserves. good luck
Thank you, I hope it helps your daughter.
I did go to a functional medicine doctor but unfortunately it wasn't a good experience.
What sort of tests did you daughter have? I'm off gluten and lactose, 100% but I need an elimination diet.
Hello , I feel so sorry for you . I was very poorly last year and I ended up having 3 brain scans before I got to see an endocrinologist , which absolutely left me freak out for a period of about 3 months . I too was very low in iron and vitamin D and I am sure I suffer with undiagnosed adrenal gland fatigue . I also have heavy periods every two weeks . I take spa tone with added vitamin c daily 1 sachet but I think you can take up to 2/3 daily for my iron and I am on 20000 ui vitD3 twice a week but after this treatment will go on to a daily dose of vitamin D . I have started taking siberian ginseng daily and turmeric and black pepper tablets . I also take a B5 tablet to help with my anxiety . I am on 125mg daily of thyroxine . I don't know if this is any help to you but I hope you do find something that helps you . It does sound like you have a awful lot to deal with but I do think you need some investigation into your thyroid . Don't give up . You need to fight for your health I wish you luck .
Thank you! How is the b5? I'm wondering if mine went real low. Right now I'm trying to learn about Hashimoto's, I'm reading Isabella Wentz's work but it's daunting since I lack a medical background to judge things.
I had one brain scan but haven't had the follow up yet.
I hope you're feeling much better!
I take the B5 to help support my body with the anxiety I think my thyroid causes , I think it helps . Apparently vitamin B5 levels are reduced under stress . I am learning you have to do a lot to help yourself as you know your body better than the doctors . I hope you find something in what you are reading that you can relate to which will help you . I am better than I was since I changed how I took my thyroid medication and started taking siberian ginseng . Good luck with your brain scan !
Thank you and I'm sorry to be so slow responding, I'm kind of just sleeping or zoning out a lot.
The functional doctor said I had adrenal fatigue based on saliva tests but my endocrinologist now says she didn't know enough about these conditions and interpreted the tests incorrectly. He said my adrenals were not functioning at 100% due to malnutrition but with gluten free I should heal and absorb again and my adrenals would work better.
I do think this has happened to some extent. I do feel an improvement, but I still feel awful. At my last appointment he said I did not have adrenal insufficiency and that things were normalizing.
I've done the 23andme, and taken methylated vitamins- dear god the side effects were awful. I'm scared to trust another functional doc, it was a nightmare. I feel they exaggerate what they know regarding genes.
I definitely did harm, it's been pretty heartbreaking.
Hello Allyson
So many people have posted already I may have nothing new to add ... but ... yellowness can be a symptom of excess vitamin A (99% sure) which can result from too many carrots. It is toxic, worth checking this.
Spinach interferes with the body's ability to take up and use iron, as do apricots, so although they are high in iron they worsen the situation. I think some nuts are the same, but here I am not sure, if you check out phytic acid you might find the answer. I think cocoa is bad too.
Hope this is of some help because you sound in such a bad state.
Thank you. I was indeed high in vit a a year and a half ago, due to a functional md's supplements. It was awful. My doctor says it has since normalized. I don't eat many carrots.
The amount of nuts I eat is limited to 1/2 cup a day, but to be honest, I haven't had any in a while.
Why does spinach interfere with iron absorption? I have heard that non-heme iron is less readily absorbed, but not that it interferes.
Hi Allyson, that is awful that someone you trusted to help you get better made you ill.
I don't remember how it is that spinach interfere's with iron absorption, that might also be the phytic acid, try Grey Goose, she probably knows the answer.
Dear Allyson - I recently read an article about spinach and oxalic acid and how eating it everyday can be detrimental in cases of thyroid, fibro etc. Please see
diet-sage.com/health-news/w... I was surprised as I have never heard this before. Am also sending you some info on chia seeds and an article on their possible side effects as part of any future research you might wish to do.
naturalendocrinesolutions.c...
medicalmedium.com/blog/chia...
chiaseeds.us/chia-seeds-sid...
I have recently been impressed by a chap called Anthony Williams. He has written a book about understanding chronic illness which I hope to get. He also has a Facebook page. The ref for his book is
amazon.co.uk/Medical-Medium...
Warm Greetings
Breizh xx
I'm in pain
I feel like no one listening.
