I have Hashimotos and have been on thyroxine since 1998. Apart from a few flare ups I have felt well most of the time. My TSH has been at 0.01 for years and my T4 has been around 19, however in 2020 my T4 shot up to 25 so my GP and Endocronologist asked me to reduce my thyroxine as they say I have been over medicated for years (despite me feeling well). I have complied with their request despite my not wanting to as I wasn't sure that was the right thing to do. I have gone from 775 mcs per week to 550 mcs per week and I feel so ill. With each further reduction my anxiety increases and my depression increases. My instinct says I ought to have left my dose at 775 and have waited until the flare up passed but my GP kept insisting that I was at risk of stroke, heart disease etc with my T4 levels being so high. At present my TSH is 0.06, my T4 is 22 and my T3 is 4.1. If too much thyroxine was the problem why am I not feeling better now that my dose has been reduced and in fact I feel so much worse than I did before I reduced.
Thank you.
Ronnie
Written by
stonecircle
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Not quite sure how you managed to take 775 mcg levo a week, but it works out at around 110 mcg a day. And, I'm guessing that the top of the range is 22? Please, always give ranges because they vary from lab to lab. It is highly unlikely that your level will suddenly shoot up to over-range on 110 mcg. You were more than likely having a Hashi's 'hyper' swing (or Hashi's flare as some people call it). And that would only be temporary, and the level would come down by itself eventually. And, what people normally do, without telling their doctors, is stop the levo for a few days until they feel hypo again. Because eventually, you're going to need to go back on your full dose again. But doctors seem incapable of understanding that, such is their love of cutting doses! And it was only slightly over-range, anyway - I'm guessing - not enough to warrant a cut of about 25 mcg a day.
And, no, you weren't at risk of stroke or anything else because levo (T4) is basically a storage hormone that doesn't do much until it is converted to T3.
But, your problem is not too much thyroxine, it's not enough T3. You are a poor converter and need your FT4 high to get enough T3. Now, after the dose cut, it is too low. So, I think you need to insist on increasing your dose back again to where it was. You are only under-medicated if your FT3 is well over-range.
Thank you Greygoose - that confirms that my instinct to not reduce my Thyroxine was correct. It's going to be so hard to get my GP to agree to up my thyroxine again as every GP and the Endo that I am under only ever say that because of my TSH levels I have been over medicated for years. So glad I jointed this site as I have felt very on my own with this. The lab my GP use puts the normal range for T4 between 9 and 22, the TSH normal range between 0.35-5.00 and the Free T3 range 2.40-6.00 (mine was at 4.2 on last blood test of 27th June this year). Thank you.
Just thought of something else - would taking sleeping tablets affect the levels of T4 being raised? Would they affect the thyroid function? Thank you.
Pretty sure they wouldn't, no. BUT, how long was the gap between your last dose of levo and the blood draw? What time of day do you usually have the blood draw?
I usually take my thyroxine at 6 or 7am when I wake up and the last blood test done (which was last month) was taken at 9am. Usually I can be offered a blood test at any time time of the day - sometimes morning or sometimes afternoon. Thank you.
Oh! So there was only a two/three hour gap between taking your levo and the blood draw? No wonder your FT4 was high! I should have asked that before. Because all you've tested there was the dose you just took. We always advise leaving a gap of 24 hours between the last dose and the blood draw, so that what you're testing is your normal level of circulating hormone.
If I were you, I'd refuse all blood tests after 9 am, Because TSH is highest early morning, and drops sharply after 9 am until midday, then slowly rises again. As doctors only tend to look at the TSH, it's best to get it as high as possible.
Also, you can only compare results if the blood draw is done at the same time, every time. I know doctors don't understand that, but that's the way it is.
Just thought of something else greygoose - would taking sleeping tablets affect the levels of T4 being raised? Would they affect the thyroid function? Thank you.
Thank you SlowDragon, the brand of levo I am on is Accord (recently changed from the 25mc Wockhardt to 50mcs Accord). My Vit D, Folate, Ferritin and B12 are all in the normal range (at last blood test of Nov 2021). I have been gluten free for just over 2 years now. Thank you for the links. Would you advise vitamin supplements given that I seem to be in the normal range on those that you mentioned?
Hi stonecircle ,i experienced exactly what you describe here a few yrs ago.
(i tried a lower dose despite feeling ok because my T4 had gone very high, which was difficult for the first 5/6 weeks but then i did start to feel sort of ok again , but then GP wanted a further reduction a few months later because T4 had inexplicably gone up more... but this left me very unwell .... in the end after i'd done a lot of reading and found some research evidence to back me up, i had a couple of very difficult 'conversations' ( arguments ) with GP about the TSH/ T4 level ,and he reluctantly agreed to put my dose back up because "he didn't want to make me unwell"..... i decided to go halfway between the two .
He wrote that i'm "aware of the risks" on my notes to cover his back.
Incidentally my T4 level was back in range again 6 months later , despite the dose being put back up a bit .
(i was on 125mcg ,then 112.5mcg ,then 100mcg which was really awful , then back to 112.5mcg which is actually ok )
There are two issues here that are giving you problems with the GP ... one is the low TSH .... i found good evidence that a TSH between 0.04 and 0.4 had no greater 'risks' than TH 0.4 -4 .. and since my TSH was 0.05 i could use that to shut him up about the 'risks of TSH'
(below 0.04 the risks did rise quite significantly so it may not be so much use for you , but i'll give it you anyway ....... link is in my reply to this post (3rd reply down) healthunlocked.com/thyroidu... ~ 'feeling fine but TSH is low' it also contains links to good posts on the subject of low TSH / risks / quality of life.
The other is the high fT4 :
The first question you need to answer is .. did your fT4 'really' go up from where it normally was on your original dose ..... or did it just look like it had gone up because you tested closer to taking the last dose then you usually do ? ( mine 'really' went up, but yours may not have if your previous tests were taken further away from the last dose than the one where fT4 was at 25 )
fT4 result is affected by time of last dose...... Between about 1-6 hours after you take the tablet ,the fT4 level will peak at a higher level than your 'usual' for that dose , and then it will gradually fall to your 'usual' level by about 12 hours .
For this reason it is advised to always leave a 24 hour gap from last dose levo , to avoid measuring this peak. eg get 9 am blood test, and take that mornings tablet AFTER the test. and do all your tests with a consistent gap from last dose .. so you can compare the fT4 levels properly.
TSH result is not affected by 'time of last dose' ,but it is affected by 'time of day'.. it is highest middle of the night / very early am ... then falls gradually to it's lowest around 1-3pm... then slowly rises again . For this reason , it's best to get the earliest test time you can in the morning , and keep the same time for all future tests .... so the results are comparable (the difference in TSH level may no be very much , but if you are very close to the edge of the TSH range it can be enough to make the difference between the GP freaking out and insisting on lower dose or leaving you alone)
oh ..... my brain is suddenly melting ,, going to find a long cold drink .... i will finish whatever else i was trying to write later x
Thank you so much for your reply and you have given me alot to think about. I think that I am going to have to have a conversation with my gp which I am not looking forward to. I will re-read your reply later and process all that you have said - when it is cooler and my brain fog has gone x
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