Simply, at 74 I’ve had years of the same old problem..I just don’t seem to tolerate Thyroid hormones..and can’t raise thyroid levels without feeling ill. I’ve tried everything,
I’m intending to pay for a comprehensive blood test next week for Blood Tests London …
Any thoughts on what would possibly be the most helpful test…they’re obviously expensive so don’t want to spend unnecessarily , but need to make spending anything worthwhile and get the best package. I was thinking of all the thyroid bits…perhaps antibodies ? Reverse t3?
Any ideas anyone?
or any experience of this out there ?
anyone with my particular problem ?!
Written by
Jollypolly
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I had awful problems starting on thyroxine then moved on to liothyronine which was marginally better but still problematic. What medication have you tried and at what doses and what additional symptoms did you get?
Hi, I’ve had problems with all thyroid treatment over so many years.
I do everything I can to make things right ..tried everything…everything…I have to concede there is something in me, or something I do or don’t do, that’s making me seem allergic to it it when I go anything past the absolute minimum. The minimum has decreased too over time, and now I can barely tolerate more than 20 mcg Levo a day. It’s so very strange….boring even! Tiring and dis-spiriting.
I get symptoms of being hyper..even though I’m not..clearly …
Recently feeling dizzy and light headed..,anxiety too.
I’m sorry to hear that. If it makes you feel any better, I really struggled too. I started on 25mcg levo and that gave me terrible anxiety, palpitations, chest pains, racing heart beat, shaking - what the doctors could only describe as panic attacks. I ended up in A&E countless times. These symptoms also sound like hypER symptoms but how could I have been that hyper when I was only taking 25mcg which is like a drop in the ocean.
Dr S then put me on T3 only and I started on 2.5mcg which gave me the same problems. I made it up to 7.5mcg and was just getting worse and worse. Probably because such a low dose was suppressing my own thyroid function and I was becoming more and more hypo because of the effect T3 has on TSH. I also wonder if I was suffering from adrenal fatigue which wasn’t helping but Dr S said this would correct in time with the right amount of thyroid hormone.
My ferritin was ok ish but unfortunately I never managed to get a full iron panel done so I don’t know if maybe I was suffering from low iron which can give chest pains etc when starting thyroid hormone. I read Paul Robinson’s book Recovering With T3 which mentions about having a bad reaction to thyroid hormone and some potential causes (eg low iron) so I can recommend reading that. In fact I have just ordered his new book (the yellow one) which I have no doubt will be useful. There is a section on troubleshooting which I am hoping will be helpful and may also help you.
Dr S wanted to continue my treatment with trying a larger dose of T3 (he may have suggested going up to 20mcg, I don’t remember, so not a whacking great dose) as he was certain I would feel better but with all the anxiety I chickened out and the thought of taking a much higher dose (over double 7.5mcg!) terrified me. With hindsight I should have had faith and listened to him and given it a go. Unfortunately he then passed away.
Additionally I should have tried taking my T3 all in one go instead of 2.5mcg three times a day. With Paul Robinson’s book I worked out that I needed to take it all in one go to feel the most benefit. This book was actually recommended to me by Dr B as well.
Maybe the more you keep trying thyroid hormone over the years, the more your cortisol and vitamins are becoming depleted which is making your tolerance level for thyroid hormone drop. I don’t know.
Sorry I hope I haven’t waffled on and that there is something here that helps you. I don’t know what your journey has been so it’s hard to give the best help.
Results a few years ago showed low folate. What are you currently supplementing?
Essential to have optimal vitamins to tolerate and use thyroid hormone well.
tests that would be useful:
TSH, FT4 & FT3
ferritin, folate, B12 & D3.
Recommended blood test protocol:
Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Thankyou for this reminder..yes, well I’ve been addressing folate…
Won’t be able to take test till about 11;am ..but can take thyroid after test..
I cannot get to 25 daily even…it’s ridiculous…I have done in the past…though symptoms were very similar even ten twenty years ago…too low on this dose…too high on that dose.
I could no longer tolerate even small amounts of the Levothyroxine that eventually made me really ill. At that stage I did the 4 X a day cortisol saliva test and found my adrenal glands were producing well below the normal level. I don't know whether that was because the thyroid hormones were not getting into the system or if they were exhausted. Whatever it was I am sure it was part of the reason I was so ill as I believe cortisol soothes inflammation etc.
I am now on T3 Liothyronine only but started on such a low dose 2.5mcg and stayed on that for 15 days then increased by 2.5mcg. I always stay on the same dose for a good few weeks each time, sometimes up to six weeks. It is a painfully slow way to do it and it has taken me since April to start to feel an improvement but at least my body hasn't rejected it because that was what really worried me.
I hope this might help a little and you are able make some headway at last.
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