Looking for advice and links to any research study you can find on long term suppressed TSH.
My TSH came back at 0.01 on my last blood test. My FT4 was in range (very bottom end) and my FT3 was in range too (in the middle). I take combo T4/T3 medication for Hypothyroidism (I have Hashimoto’s too). My problem is my GP is now saying I am Hyperactive. She is basing this on the suppressed TSH alone. I keep trying to tell her my hormones are in range therefore I CANNNOT be Hyper but she is adamant I should reduce my medication to increase my TSH because it’s “dangerous” to keep it so low.
Here’s the deal - I felt better than I’d felt in a LONG time however, in order to appease my doctor I’ve reduced my Levo for the last 6 weeks and already I feel worse. Fatigue worse than ever, weight slowly increasing again, cold sensitivity has returned, dry eyes and sporadic blurry vision and body aches worse than usual. How can I convince my Doctor that suppressed TSH as low as mine is 1) not dangerous and 2) not representative of HYPERthyroidism? 😭 Any links to studies?
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Pamela0106
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I don't know the answer, I am in the same position.
My GP constantly bleats on about my suppressed TSH. I keep telling her it's been that way for the 20 years I've kept a note of my results (I've been diagnosed/treated for 43 years). I tell her that my FT4 and FT3 are always in range - never more than 3/4 of the way through, sometimes it's been half way through, - but she still bangs on about suppressed TSH. She said she would refer me to Dr X (endo at our main hospital). I refused to reply to that because I know Dr X is a diabetes specialist and not worth seeing, and I refuse to go back and see the endo I saw back in 2002 because he was a bully and made me extremely unwell and almost bedridden by insisiting my TSH came back into range. I've told her I wont put myself through that again for anyone.
I have had a similar conversation with the Advanced Nurse Practioner at the practice, 2 or 3 times, and after an interesting discussion he accepts that I am "one of those people who just have a suppressed TSH when FT4 and FT3 are in range". He is happy to leave things as they are.
So for me, I shall continue to ignore my GP, she wouldn't read anything if I did take it in for her anyway, she washes her hands of it and just wants to refer you to an endo, no discussion whatsoever.
There are lots of stdies that allege that suppressed TSH <0.01 on therapy gives increased risk of osteopoorosis and atrial fibrillation. The problem with each and very one of these studies is that they fall into the trap of generalisation. That is, they assume that there is a uniform risk for each and every patient with suppressed TSH on therapy. This is not true: in the studies performed, there was no doubt some patients overdosed on therapy, that caused their supressed TSH. But equally there are others for which this is not true and their suppressed TSH is a result of proper treatment without other risk. Your doctor should know that it isn't TSH that controls your health, but the levels of free thyroxine (FT4) and especially free T3. If these especially FT3 are in the reference range then all should be well regardless of the TSH. BUT it still could be the case that you are too high in the reference range as an individual for your particular health parameters. Your assessment of your own health is most important here, not the biochemistry. It has to be realised by patient and doctor alike that there is a trade-off; a suppressed TSH with a slight (and it is only slight if it exists at all) increased possibility of OP and AF later in life, or a poorer quality of life over many years with reduced insufficient dose with less likelihood of OP and AF. You should be allowed to choose which way to go. I think virtually everyone would choose good QoL. The doctor should realise the situation isn't a zero sum situation - patient health in the here and now should prevail over vague fears for the future.
I too have a very low TSH and I suffer from Atrial Fibrillation. I recently asked my cardiologist were these two interconnected and she replied in the negative. Nobody ever tests my T3or T4 although intend to do it privately when I return from holidays.
I have suffered with this problem for many years and argued with that many Gps and Endo that I have lost count. They simply cannot understand that the problem lies with the pituitary not sending out the correct level of TSH. This under stimulation of the thyroid gland causes the person to have hypo symptoms but to look hyper if you only look at the TSH levels. What is important is to look at the T4 and T3 levels only and to ignore the TSH in these cases, but getting anyone in the medical area to understand this is very difficult. I would suggest that you ask for a referal to a pituitary specialist centre to investigate your low level of TSH. Incidentally my low levels of TSH has a family link, as my brother, two of his children and both of my children all show the same problem.
My low level of TSH has declined over the last 15 years and for the last 6 it has been absolutely zero. This is probably as a result of a head injury I had about 25 years ago. The only problem this has caused is that the only thyroid medication I can take is T3, but no heart or bone problems.
I have just been to the doctor and like you he is suggesting to lower my levothyroxine in order to bring my TSH up. I reduced my levothyroxine by .25 and I can tell my clothes are getting tighter even though I am walking every day and trying to watch what I eat. I’m so frustrated because my doctor had reduced my .25 to take every other day, 2 1/2 years ago in case I would have heart problems, but I feel I will definitely have heart problems with all the weight I’ve put on. Sorry for such a long one....
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