I have been hypothyroid for nearly fifty years. I have changed to a new gp (when I moved to a new area) and they decided I was over medicated with thyroxine as my TSH was very low. I disagreed, telling them that I had felt stable for years, so I was referred to an endocrinologist, but my opinion was ignored. I have been compelled to reduce my thyroxine dose from 150mcg to 100mcg, and after six months of this I am feeling dreadful. I can hardly function. I have paid for private blood tests which show my FreeT3 is falling. Could this be the problem? I don't know what to do next.
Would it be helpful to send you my last few thyroid blood test results?
Thank you.
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annv
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Can you add your results please, include the reference ranges as well as these vary from lab to lab.
Dose shouldn't be adjusted by TSH alone, this is not a thyroid hormone, it's a pituitary hormone, the thyroid hormones are FT4 and FT3 and it does make you wonder why doctors don't know this and look at those instead. And why they don't listen to patients, those who are living with and experiencing the condition, is beyond me.
It sounds very much like you possibly shouldn't have had your dose reduced, or at least not by that much.
Yes - absolutely, post your results and ranges on here and you will be advised :
I think you can do 1 screen shot or type them in, ideally we need to see a TSH, T3 and T4 drawn from the same blood sample - though know in primary care you may only get a TSH and a T4 once in a blue moon - just post what you have got :
Your question is very common and why there are over 125 K members registered on the Thyroid UK who are the charity who support this forum.
It is simply a stark fact that, after many years of being satisfactorily on T4, or indeed on T4/T3 combination, your body has adjusted to the situation. By that, I mean that if your pituitary has been suppressed for all these years, it will not respond to lowering hormone dosage except perhaps after several years, if at all. T4 dosing is not like accelerating or decelerating a car instantly. TSH is not now the speedometer that tells you how fast you are going. If you are feeling ill on reduced T4, this has to be taken up with the GP again.
Thanks.My doctor retired and I've got an appointment with the new one on Tuesday. I'll print this out and give it to her if she even tries to give me any flack about my dose of thyroxine.
My endocrinologist 'fired' me last year. Terrible timing.
Hello and thank you for your reply. I have put together some information, and tried to be brief. There is obviously masses more I could say after having trouble for so long!
Brief history of my thyroid illness.
Born 1948.
1976 (approx) developed hyperthyroidism. Swollen neck. Very unwell. Treated with beta blockers and another drug of which I have no record. Gradually settled down. Stopped drugs.
1980 (approx). Became hypothyroid. Put on Levothyroxine 175mcg a day. Felt fine. Had a hard working and successful career as a teacher.
1990s. Directives seemed to change. GP insisted I reduce Levothyroxine to 150mcg. I suspect now that it was connected with testing for TSH. I began to have health problems eg. chronic fatigue, fibromyalgia, but didn’t connect it at the time with change in thyroxine. I was managing.
2007 moved areas. New GP wanted dose reduced to 125. I tried it but felt so bad I was allowed to remain on 150 provided my records showed that I had knowingly ignored advice and understood the risks. In 2017 this GP retired and new one would not allow this arrangement to continue and I was eventually referred to referred to an endocrinologist in 2021.
I have made another two attempts to reduce my levothyroxine as instructed. Most recently I have been on 100mcg for seven months, and I feel dreadful. I am convinced I am hypothyroid. The endocrinologist has said I am on the right dose and discharged me back to the GP’s care. So now I am stuck.
Have had frequent blood tests. I have picked out some results that may be relevant.
July 2017 (Medichecks)
TSH 0.009 mIU/L range 0.27 - 4.2
Free Thyroxine 29.7 pmol/L range 12 - 22
Free T3 4.98 pmol/L range 3.1 - 6.8
Reverse T3 33 ng/dL range 10 - 24
Reverse T3 ratio 9.82 range 15.01 - 75
Nov 19 (Medichecks)
TSH 0.014 mIU/L ranges as above
Free Thyroxine 21.5 pmol/L
Free T3 5.05 pmol/L
Jun 21 (Medichecks)
Thyroglobulin Antibodies 12.1 IU/mL range 0 - 115
Thyroid Peroxidase Antibodies < 9 IU/mL range 0 - 34
Dec 21 (GP) - Typical of my results over the years I was on 150mcg
TSH < 0.01 mu/L ranges as above
Free Thyroxine 27.4 pmol/L
March 22 (GP) - Had been on 100mcg for 3 months
TSH 0.14 mu/L range as above
Free thyroxine 20.7 pmol/L range as above
Free T3 3.7 pmol/L range 3.9 - 6.7
Aug 22 (Medichecks) - Had been on 100mcg for 7 months
TSH 0.62 mU/L range as above
Free thyroxine 16.7 pmol/L range as above
Free T3 3.34 pmol/L range 3.1 - 6.8
In answer to your questions:-
Levothyroxine brand is Almus, has been for years.
Vit D Aug 21 - 67 nmol/L (50 -100) not tested since reduced levo dose.
Folate Mar 22 - 4.9ug/L (3.9 - 26.8) test done 12 weeks since levo reduced.
Ferritin Jul 21 - 306 ug/L (30 - 148) not tested since levo reduced. I do have a rheumatoid/inflammatory condition, not given a definite diagnosis yet by rheumatologist who is working on it.
B12 Mar 22 - 440 ng/L (197 - 771) test done 12 weeks since levo reduced.
When all this started I was told I did have autoimmune thyroid disease but as you see there is no evidence of antibodies in recent test.
I do not take vitamin supplements.
From my reading around I think I may be someone who would benefit from trying T3 treatment. Would you agree? I cannot see any way of getting this in my NHS area. Can I buy this privately and experiment with self medication?
By sending this reply to you will all the other people who kindly replied to me be able to see it? I am hoping so but I am not sure how it all works!
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) .This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Thanks so much for all the enormously helpful information, and for all the time you have spent. I will now start to put your recommendations into practice. I am really excited at the thought I might be able to feel better! By the way Malcolm Kendrick is one of my heroes.
By sending this reply to a named forum member - SD - they are notified to come back and read again - other forum members are not :
The easiest way to gain everybody's attention again is to start a new question/post as then it gets full exposure on the rolling screen like your first post did.
The rolling screen rolls very fast most days and a post over 24 / 48 hours old is generally considered as actioned and most forum members move onto new questions.
However SD has responded and you now have an excellent base on which to start your thyroid journey and research :
A new question = a new post :
So when you come back on again, with just a question, or your next set of blood tests start a new post as then you get all forum members attention and we look back at your previous posts to refresh our memories.
P.S. If you hadn't had directed the new information to someone - you likely wouldn't have been picked up - as the post at 4-5 days old appeared as answered.
I am so sorry. In transferring my reply to you a few minutes ago I seem to have erased all the things that helped to make it readable, such as underlining, spacing etc. and I can't get it back to change it now. I do hope you can understand it.
I have paid for private blood tests which show my FreeT3 is falling. Could this be the problem?
In a word Yes!
Why medics don't listen to patients is beyond me!
Your dose was reduced, I expect on the basis of your TSH result which was considered too low
This is nonsense!
How you feel is very important and should be considered.
You will not be overmedicated unless your FT3 is over range
Problem....they rarely test FT3
It looks as if this medic diagnosed by numbers alone and forgot to factor in how, you, the patient, feels
For good health almost every cell in the body needs to be saturated with the active thyroid hormone T3.
After we take thyroxine ( T4) it is converted in the body to T3
So long as this conversion is good this happens and we have adequate T3
Some people have impaired T4 to T3 conversion resulting in low cellular T3
This is evidenced by high FT4 with low FT3
They may need to add a little exogenous T3
However your conversion seems unlikely to be a problem, so adjusting your dose of thyroxine should suffice.
TSH reflects the amount of thyroid hormone in the blood but it doesn't show how much of each hormone ( T4 and T3) there is....or if either is too high or too low.
I'm not surprised you feel rubbish, you most likely need to have your former dose reinstated if that is what made you feel well. Your body has responded well to that dose so changing it has " upset the apple cart"!
However it is always best to have a full blood test during dose changes
TSH, FT4, FT3, vit D, vit B12, folste, ferritin and antibodies TPO and TG.
Did your private test include these
Can you please post your results including the lab ranges?
Members can then see what is going on.
This might help you persuade your GP to think again!
I am sorry that you’re in this position, a lot of us have been there. I may get told off for this but -
You felt well
You reduced the dose
You feel awful
Why do you need a test? That’s what got you into this position…
What happens if you increase the dose?
Just be careful, a 50mg reduction is huge, I wouldn’t try increasing back up all in one go, if it was me I’d add 25mg first.
The first GP who helped with my thyroid always used to say “if it’s not broke don’t fix it”. My first response to test results that indicate a change of dose is needed is always “let’s repeat the test then, it may be an error”. It’s amazing how many times GPs decide to leave the dose as it is !
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