Hi everyone, I'm taking a whopping dose but still feel very hypo. I haven't taken my temperature in quite a few weeks. Last temp was 36.6 and tonight it's 35.4. I have a blanket on, the wood burner is roaring and the central heating is on. I increased by another 12.5 MCG of T3 a month ago. Why is my temperature lower now??
I'm honestly going around in ever expensive circles. Back to the absorption issues.
Sorry I can't answer but I can understand!! my tsh is 'normal'and I'm always freezing . Before thyroidectomy I used to be hot but now I sit with loads of clothes on trying to heat up in work. I do feel better after lunchbreak walk but that might be because I'm happy it's nearly hometime!
Hi Throidmeg, thanks for your reply. I'm usually really cold but if I have a warm drink I instantly sweat! I tried to cook last night and my clothes were so wet I decided to put my nightie on while I finished. 3 hours later my temp is really low, absolutely no thermostat. My skin is still really dry it's like sandpaper. So fed up with this!
I haven't been out much, waiting for deliveries all the time, I think this is having an impact, also a lot of family strife is making me very stressed.
Hi
Dr P told me when dosing with NDT / T3 there can be paradoxical 'shut down' effect if you overwhelm your receptors with too much hormone ... so you get a drop in temp as everything goes 'off line' I don't really understand it fully but at those doses I'm hoping you are being supervised by a knowledgeable doc. Are you taking your hormone sublingually? Have you been 'creeping up on the problem slowly' to use Dr P's words?
In terms of malabsorption, what tests have you had done on that? A genova digestive analysis? Candida test? What are you doing to correct it? Paleo diet, fermented foods, antiboitics for parasites, nystatin for candida, symprove probiotic, permavite powder for leaky gut, digestive enzymes, betaine hcl for low stomach acid etc etc etc ??????? I have had to painstakingly deal with all of these.
Assuming you are doing the basics - taking calcium and iron away from thyroid, taking vit C with your iron, taking digestive enzymes and betaine HCL with your meals?
Rebecca
x
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Hi Rebecca, thanks for your reply, as far as I know I'm doing everything right. I got diagnosed in August 2011 and no dose seems to have a dramatic effect. I wasn't diagnosed for decades, I wonder if my receptors were ever open? I have PA, low Iron, and low stomach acid due to cimetidine which I can't stop taking. It helps a bladder disease I have. My diet is as acid free as possible, and adding any acid causes excruciating pain. I just don't think my thyroid meds have any chance of working properly. I'm very careful with timing of drugs and supplements.
I've just started probiotics to see if that helps any. I also think low cortisol doesn't help, I have been tested and it was 15.3 total. Repeating the test next month. I try with my iron but I get constipated and then my anal fissures just tear. I'm at my wits end. My folate is also low, so supplementing that and injecting myself twice a week with B12. My Vit D3 has now raised into a healthy range. I eat a good diet so shouldn't be deficient in anything. Obviously low stomach acid is causing this. With my iron I've been supplementing two years and it's still the bottom of the range. Everything like folate b12 has been falling drastically.
When I've been asked to reduce my dose I spend my whole time lying down feeling terrible. I don't even have the energy to feed myself. I know it sounds pathetic but I feel like I have heart failure or something. Sweating, heart going crazy, breathless, weak legs. I got stuck on the bathroom floor for quite a while because I couldn't push myself up, I also have difficulty climbing the stairs. I can't stand and I can't walk far without needing to sit down.
I got up to 200mcg T4, supervised by Dr Skinner, and by my temps and other physical signs he said I had a way to go.
Every dose I've taken I've done very slowly, I feel I could take a bucketful and not feel anything.
My blood sugar is high and I'm very stressed do not sleep etc, I think all this is having an impact.
On the plus side my cholesterol has come down from 7.7 to 5, and I've lost 2 stones in a 16 month period.
I did read you need 30% more thyroid meds with low stomach acid, and cimetiding I have to take is on the patient leaflet for T4 and no one took a blind bit of notice.
I chew the armour and all the T3 I take sublingually.
Thanks for your suggestions.
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Hi there,
Poor you what a nightmare. Re iron, it's more expensive that gold but I used Proferrin ES, you can get it on Ebay from the states and it's polypeptide heme iron designed for gastric bypass patients and it really works. Non-constipating. Also Bluebonnet Chelated Iron 27mg is highly absorbable and cheap from Iherb and won't bung you up, if you buy them individually you pay £4 shipping but will not get stung for customs charges. Also a very good product. Spatone sachets are good too but there's only 5mg of iron per sachet so works out expensive in the end.
Again expensive but Symprove is a probiotic that a gastro prescribed for me, you can buy it direct from Symprove, it's about £15 a bottle and you need to take it for 12 weeks, a bottle will last about a week depending on your weight (you take 1ml per kg of body weight) this has made a bit difference to me. You could also brew your own water kefir, the starter culture costs pennies on ebay and if you put fruit in it it doesn't taste bad and it's cheap.
It might be worth investigating candida - you could do one fluconazole treatment a week for three weeks and eat a low sugar diet. Gluten obviously inflames the gut so going wheat free - sure you already are - and avoiding most grains can help. Paleo diet with plenty of good quality protein, and good fats like coconut oil and grass fed butter, and lots veggies and low sugar fruits....
Testing your sex hormone binding globulin (SHBG) can tell you whether your thyroid is getting into your cells, low SHBG correlates with low tissue levels, high is correlated with either hyPER or often seen in people supplementing thyroid hormone .
High blood sugar is correlated with not enough T3 or too much T3 - a tricky one but mine's now normal having been high when I was hypO on levo. Low iron and low cortisol will cause real problems, have you done a saliva cortisol test? Serum tests and urine tests aren't all that great. A lot of the symptoms you are describing are low cortisol.
Are you taking the activated folate (I think Thorne Methyl Guard as the correct bioavailable stuff in it - I also have a double copy of the MTHFR gene so I don't methylate B vits properly, I also inject B12 and my German endo told me to do it on the USA protocol, one jab a day for a week, one a week for a month, and one a month for a year - I'm now on three monthly jabs).
One final thing, a lot of people have had issues with absorption of Armour since it was reformulated in 2009. I now take WP Thyroid which only has two ingredients. Other brands to look at might be Erfa, Acella or Naturethroid. I let it dissolve totally under my tongue and have nothing but water for an hour before and an hour after.
Finally I'm also a member with the nice folks on TPA, they have this handy document: tpauk.com/main/?page_id=1599
I really hope you get a breakthrough soon,
Rebecca
xxx
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Hi Rebecca, thanks so much for the iron info, I will have a look definitely. I bought Spa tone, and just finished the pack, I was taking two together, it tastes disgusting and unfortunately I can't mix it with anything. It didn't constipate me which was a relief. I do need things that seem to bypass my tum.
I've just spent £30 plus on probiotics, I thought it may help avoid the diarrhoea I've been having intermittently since 1998. I will check out the one you suggest though, thanks.
I was told before Christmas that my blood sugar was prediabetic. I've been hearing that for at least 14 years. I think the chronic insomnia is without a doubt is contributing. I haven't slept through the night since 1993 when something majorly stressful happened in my life. I never ate refined carbs, but I have cut them right down and avoiding sugar too. I also lost 10llbs since Christmas so I'm hoping that will help too.
I bought methyl folate, and I've just received 1 mg dose, very aware though that my GP should be prescribing 5mg for 4 months.
I got diagnosed with PA 10 years ago but my GP didn't give me injections, just 50mcg cyanocobalamin, which did nothing for me. I took the NICE guidelines with me to my GP because now of course I have painful nerve damage in my lower legs and feet. She would only give me 2 a week, the guidelines say every other day, so that's another battle.
Yes last May I did an adrenal stress profile, the total was 15.3 (22-41) I have lost pubic hair, and all my underarm hair has gone. Again she almost thinks this is funny, won't connect it to low cortisol.
I'm using Westhroid now because it was cheaper. NDT I have to say caused a reduction of swelling and mucin, that T4 had failed to do. I've just ordered thiroyd because it's a good price. I've thought of going to just T3 to see if it will wake up my receptors.
I did suffer from thrush from 20-49 years old, I do seem to be rid of it now with falling oestrogen, and probably lack of sex! My bum curbs all activity!
I have to do something, I fainted again this afternoon, which does worry me.
You've been wonderful, thanks so much for your help, it's much appreciated. Xx
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This is in reply to all three answers to save you scrolling up and down. Blimey you are in the wars! It does sound adrenal, partic the fainting, loss of hair, and waking in the night. Be interesting to see what your adrenals are doing now. It's not just the total amount but also the rhythm, so should be high in the morning and taper right down through the day. My output wasn't too bad but my rhythm was a mess and HC has made the world of difference. Steroids arent' for the faint hearted - there are pros and cons.
Sounds like you are doing all that you possibly can but I'd wager if you can get your iron up and your adrenals stable you'll be on your way. HC cream of course would bypass the gut issue also.
Once you've got your results you could try it for five days without any risk and just see if it helped. I'm now on pills but I started on cream and with 1% cream, quarter of a teaspoon = 10mg of HC. Most people dose something like 7.5 + 5 + 5 + 2.5 at 8am, 12 noon, 4pm and 8pm. More than five days on it and you'd have to taper off ....
Really good luck, keep us posted
Rebecca
xxx
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Hi Rebecca, my cortisol is extremely low until the evening, which probably doesn't help my insomnia.
I have a link for the cream, I'll definitely start after my next saliva test.
Thanks for the info re dosing, I had no idea how to go about it. Xx
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You're welcome - the STTM pages either online or in Janie's book have a whole lot of info on how to do it xx
I feel well now and am on T3 alone, and last night I was felt so hot in bed I took my temp - it was 36. Excerpt from Dr Lowe:-
Over the years, we've found that some patients’ low basal temperatures don't increase, or don't increase much, despite them fully recovering from their hypothyroid symptoms by using T3 or Armour Thyroid. Molecular and physiological principles lead me to a conjecture about the persisting low temperatures of these patients. We all have enzyme systems that maintain core body temperature by causing cellular energy to escape as heat. Thyroid hormone regulates the production of these heat-regulating enzymes. The enzymes decrease in hypothyroidism, leaving most patients colder. When the patients undergo effective thyroid hormone therapy, the enzymes increase and, in turn, so does the patients’ body heat.
But the patient whose basal temperature doesn’t increase with effective thyroid hormone therapy is presumably different at the genetic level. The genes that code for the temperature-regulating enzymes in the patient are less responsive to thyroid hormone. As a result, her basal temperature remains low, as yours is, despite her recovering from all other indications of hypothyroidism
Hi Shaws, hypo and PA runs in my family so I know there's a genetic element here. Maybe I have that faulty gene, clutching at straws now. Cimetidine changes liver enzymes as well as making the stomach have low acid. A local pharmacist told me I'd never do well. I tried an alternative, Ranitidine , it still causes low acid, but doesn't affect the liver. It didn't hold my bladder symptoms and I had 1 1/2 weeks of bladder spasms and pain so bad I couldn't leave the house.
I'm going to give just T3 a go, but worry about my adrenals. I'm getting an awful crash every day between 4&5 where I get very cold and literally can't keep my eyes open. The only thing I'm taking is ginseng, licorice root and B5 for my adrenals. The only thing positive I've noticed thus far is the licorice helps my constipation a little.
Re temps, I was always the kid without a coat, I always ran really hot. Now my temps flucture all day, which I think is adrenal. If I touch washing up water I sweat, same with warm drinks. If the ambient temp is hot I'm melting. But sometimes when I'm sweating I take my temp and it's well below normal!
My highest temp has been 36.6 thus far. That was 200mcg T4 & 3 grains of armour. I think Dr Skinner was running out of ideas, I always had hypo symptoms when he examined me.
Thanks for your help.
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Sorry me again, just to say when you are really ill, herbs can convert the wrong way - they don't always work the way they should and can further disregulate your cortisol. In your shoes I'd do a saliva cortisol test and if you are low in cortisol then only replace the hormone that is missing with bioidentical hydrocortisone at four points a day as per the STTM protocol. You don't need a script, you can do it with HC cream you buy OTC but you do need to do your homework and have some supervision. Dr P supervises me. xx
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Hi Rebecca, I've been in a lot of severe pain with my bladder for a good 15 years, I think this has contributed without doubt to my adrenals not functioning as they should. I also had 6 years of steroid injections into joints, my GP acknowledges that this has more than likely knocked my adrenals, but wont do anything.
I'm re doing the saliva test next month.
I tried LDN but felt so ill and I think it had a bad effect on my adrenals.
Cimetidine is quite toxic and seems to interact with so many things. I'm sure some things that would be ordinarily a good thing to take, could have the opposite effect!
Hi sheenah, I've just started taking magnesium regularly now, the Holland and Barrett version makes me poo which is a blessing lol! I took the Solgar one before but it didn't have the same effect for some reason I think it helps my body pain a little, so I'm making sure it's every day now.
I will read more, thanks so much for suggesting this!
I have only just begun looking into it, but I am going to try the oil - being transdermal, it avoids your gut and goes straight into the blood stream - I hope you feel better soon - all this is so much...poo!! xx
Sheena, it is all poo, you're right!
I had no idea you could get oil, I like the idea of absorbing things through skin, as my gut is such a mess. I wish there were more drugs you could take this way, it's bound to work more efficiently.
Good luck with it! Xx
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Soaking in Epsom salt baths, cheap as chips in 10 kilo bags on Amazon, is another way to bypass the gut .... I spend hours in the bath!
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I would love to do this! But I can't have a bath because of my b****y bladder. I do shower though lol! X
Hi Helcaster, just thought I would let you know that I use the Better You magnesium spray and it helps me sleep and because I spray it on my knees it helps the pain there too. Do feel for you and hope you can find a solution to your problems. Janet.
Hi Janet, I had a read up on magnesium, and that it can help insomnia. I will take it at night. Getting it in a spray would be a good thing, thanks for the info! Xx
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