You may not have wanted to continue this 🤣 but here is another paper for all those interested. I can post more but as they are fairly heavy going I am leaving it at this one for now.
Tbh I haven’t read it for an age but from a brief perusal it seemed to cover it if anyone has anything better please feel free to add it
I do have a question… I am assuming that we are all different but from having a surpressed tsh does anyone experience a raise in TSH when stopping liothyronine? Or Levothyroxine? I have read anecdotal claiming sometimes it never recovers. Does this depend on how long you medicate for or is it common the tsh stays surpressed for lengthy periods? Does anyone have any info?
Any help appreciated.
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I am assuming that we are all different but from having a surpressed tsh does anyone experience a raise in TSH when stopping liothyronine? Or Levothyroxine? I have read anecdotal claiming sometimes it never recovers. Does this depend on how long you medicate for or is it common the tsh stays surpressed for lengthy periods? Does anyone have any info?
I only have my own experience to go by, nothing scientific.
Some years ago, when I first went T3 only, after being on NDT for some years and it not agreeing with me, I was taking 225 mcg at one point. I have no idea what my TSH was, because I didn't get tested at all in those early years of TSH only. But, on that dose, I would imagine it was suppressed. It had been suppressed about ten years early, when I was taking T4+T3, then went onto NDT, then T3 only, so I imagine it had been suppressed for some time.
I became ill - nothing to do with thyroid - and had to go into hospital. I was delerious at the time, so not taking my normal T3 plus vits and mins. When I came out of hospital, I didn't start taking my T3 again for six months - don't ask me why, I wasn't thinking straight at the time. lol Anyway, after six months, I found I was putting on weight, so went for a test. My TSH was about 45. It had only been 11 on diagnosis! So, for me, even after all those years of a suppressed TSH, it still managed to rise.
So, it is different for everyone, but I have no idea what the difference is. For some it stays suppressed, for some it doesn't. Who knows? I don't.
Thanks Greygoose. I have read your profile a while ago and realise that you have had your struggles. So after all of that your tsh still managed to raise itself.
You are right 🤷♀️ Why some do get an increase and some don’t is a mystery but it’s interesting and I appreciate your reply. Thanks.
Regarding TSH and deiodinase (T4 to T3 conversion) I will reply to DippyDame in the original post.
If TSH has been suppressed for a long time (many months) it may or may not recover. The rough impression I get is that it recovers in about half of cases (I can't remember results I've seen from studies). In my case my TSH was suppressed for a decade and it hasn't recovered even though I came off thyroid tablets a couple of times for a month or two (and was dreadful). TSH did pick up but it remained lower than it should have been for my low fT3, fT4. My TSH, fT3, fT4 were fine before I started thyroid hormone for an unusual form of resistance to thyroid hormone caused by endocrine disrupting chemicals.
Ah hello Jimh111. Thank you so much for replying. I have just seen your reply to the original issue on tsh and note that you linked to your site. Thank you. This is great as I seem to have lost a previous saved link to it and was going to ask so thanks.
Appreciate your input on tsh too. Do you consider it to be an impaired Pituitary issue or the whole HPT? It seems a downgrade signal is a problem for a whole load of people. Especially when it comes to getting treated.
Re. your question 'can TSH ever recover if it's been supressed for ages on Levo'
Yes mine did .
When i first started Levo my TSH didn't alter much ~ 2.9 on 50mcg ~ 2.5 on 100mcg ~2.7 on 150mcg (it was originally 6.8 at diagnosis)
Then i felt unwell again so tried an increased dose (possibly 175mcg ? ), but it didn't improve how i felt, so i got a blood test . TSH 0.001 / fT4 37[13-26]
Reduced back to 150mcg and stayed on that dose for 11yrs.
TSH stayed between 0.04 -0.18 all this time (most often 0.05) , with fT4's between 50 -130% through range. (i did once reduce to 125mcg giving TSH 0.69)
Then after 11yrs of getting bored of hearing ' your blood test is normal' when i often didn't feel well /normal..... i got curious to see how much they could actually tell from looking at thyroid bloods.
So i stopped Levo completely for about a week and a half, but took 150mcg again on the morning of the blood test. I wanted to see if TSH would rise , (but Don't try this at home folks ..it makes you feel crap for weeks )
TSH 7.897 !! (fT4 66%) "Abnormal Contact patient"
GP made no comment ..... at all.
Which is where i realised my annual reports of 'your thyroid blood test is normal' might not be such brilliant proof that my thyroid medication was actually correct.
(I only found out i had caused my TSH to rise by so much many years later when i got my records )
I didn't have another blood test for a couple of years (didn't seem much point bothering !).... but when i did have one my TSH was back to my usual 0.05ish and stayed there.
( until last year when it was 1.9 , for reasons that are not entirely clear yet)
Thanks Tattybogle. I am sure your story resonates with many! Whilst none of us are wishing it upon ourselves the classic ‘all normal’ hits you with such disappointment! I know that feeling only too well.
You stopped your levo? Felt awful and don’t recommend it! I’ve read others doing this and their similar view. I admit I have considered it but decided to take onboard the comments from those who have tried it such as yours above so I appreciate your experiment and the information!
Yes stopped it completely , but never with the intention of stopping permanently .. just wanted to see if i could get TSH to budge . I started again straight after . Back then i was much fitter than i am now.. but it still caused about a month of feeling crap overall , which i was expecting .
I wouldn't do it again nowadays .. i have much more respect for the complexities of the system i'm messing with.
Back them i was like fred flintstone poking a stick in the fan on a computer to see how it works.
A month of feeling pants for a week and half off the stuff. Hardly seems fair does it??! I would quite like to see what happens if I did it but the thought of going backwards 😖 it’s not for me!!
The more I read the more fascinated I become but I’m on the border of becoming duller than dull. Actually some may say I’m already there 🤪
nah ! you're still funny. What get's me is, if we find it all so fascinating (and it is ) why don't the people who decided to specialise in endocrinology find it even a little bit interesting.
Why aren't GP's the least bit curious when you give them TSH 7 out of nowhere .. (somebody evidently decided to re-run a TPOab when my TSH was 7 , but from what i can tell from my notes it seems that was the lab not the GP )
6 months after i got the 7, a GP was listed as doing an 'annual medication review'. so you'd think he was at least supposed to look back at the previous TFT .. which had "!! abnormal , contact patient !!" splattered all over i ( twice) .. but no .. still on comment or contact from that GP either.
Oh I know. Why? I think maybe that it’s tricky to make people feel better. There is certainly no instant gratification from thyroid disorders and it’s a long drawn out demise too. Perhaps I’ve just seen glory hunters that can actively help the next diabetic patient with numerous complications but the thyroid patient is basically a malingerer?
The attitude to suffers aside, if they only understood how integral it is to health they would save a fortune on other needless tests and other medication. I find that mystifying. Well just plain effing stupid. I mean? What’s that about?
Stuff ‘em I say. The only thing I could really do with them for is a prescription and I’m not boo hooing if I don’t get that anymore.
Although my partner, who has non-autoimmune hypothyroidism, did not have a suppressed TSH, both this level and his FT4 and FT3 were all optimal. Last year he stopped his levo, (long story not associated with his thyroid condition), with the knowledge of our GP. In less than a month his TSH went from optimal to 100 or so, causing kidney damage severe enough for him to have to attend our hospital emergency unit. He had two further appointments there, and the hospital kidney consultant instructed him to resume taking his levo immediately, and to return to, and maintain, a TSH of no more than 1, as she said that it was his high TSH that was damaging his kidneys. Once his kidney function levels had stabilised, he was signed off to the care of the kidney team, who, surprise surprise, have unfortunately not followed up with him since, leaving him to address his CKD alone. Yes, we are all different, but it shows that for some, stopping thyroid meds can cause severe damage to more than just thyroid function.
I am so sorry to read that Partner20. That must have been awful for him and worrying for you both. There is no surprise at the lack of follow up though and that in itself is appalling! I do hope that retaking levo has helped his situation? Although I have to say it’s good to hear that a doctor actually knew what to do!
I think people stop taking their medication for all sorts of reasons. When you struggle with getting a balance of liothyronine and Levothyroxine it sometimes strikes you that maybe it would be better to go back to the start. Also with a lot of people not doing well on levo they are probably more inclined to think that it has something to do with how rubbish they feel. I do understand why people choose to do it. Wise or not. No one wants to feel worse they just will try anything.
Thank you for your reply. It’s interesting to see how your partners tsh shot up and the repercussions. I can’t imagine why a doctor would suggest it in the first place but I sincerely hope he’s feeling improved.
Although I take t3 only, my TSH is not suppressed, just slightly under range - c 0.25. But even with no meds and under range FT4 and FT3, my TSH has never reached even 0.8.
I’m assuming you don’t have autoimmune thyroid disease? I can imagine that was very frustrating getting the medical profession to take you seriously? I have that problem with a friend atm. She is finally seeing an endo after 15 years of being very poorly. Fingers crossed.
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