Living well with a supressed TSH?

Just out of interest I was wondering how many people are actually living with a TSH of less than 0.03. I know some people are and whilst I have had lots of good advice on read lots that some people have to have a surpressed TSH to feel well, I am still wondering how the hell I convince my endo of this. He won't give me more T3or T4 because me TSH is 0.01 although my T4 and T3 are right at the bottom of the range.

Anyone know of any good medical articles that dispell the TSH myth please? He told me that I could have a stroke in 5 years time. :(. Scaremongering surely.

18 Replies

  • Email me for the thing by Dr Toft which says about low TSH and high FT4...



  • Thank you Louise. I have the article but it doesnt help me unfortunately. IN fact it makes it worse? I am on 75 T4 and 20 T3 with results TSH 0.01 - T4 10 (9 - 21) and T3 3.9 (3.6-6.5)

    The article states below

    "A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added. While taking both hormones it is important serum TSH is normal and not suppressed. If the patient is still dissatisfied it should be made clear that the symptoms have nothing to do with thyroid disease or its treatment and perhaps issues at home and in the workplace should be addressed"

    My TSH is supressed :( So based on the above my symptoms are not from being Hypo....but I have hardly any T3 :(

  • Oh! :(




  • My wife who is now 75 contracted Hashimoto's 45 years ago, totally destroying her thyroid. All since then, she has been on 150/125 ug T4 with no detectable TSH ever. Once the dose was dropped to 100 with unpleasant results - Now has good bones - no osteoporosis, very occasional atrial fibrillation/blood pressure drop controlled by low dose beta blocker. We've reached an agreement with the GP that she knows better than him if she feels well or not, and she controls her own dose and keeps well clear of TSH testing and GP interference.

  • Thanks so much. That is good to know! :)

  • You are more likely to have a stroke with too little or low B12. If you email and ask for a copy of Dr Toft's article in Pulse online. In it, question 6, you will see he says that some of us need a very low or suppressed TSH to feel well. My TSH was always around the same as yours. At present I haven't a clue what it is at present as I am feeling well, thankfully. Dr Toft was President of the British Thyroid Association.

  • Thanks Shaws......the only problem with the article is that it states if you take T4 and T3 you must not have a suppressed TSH. My TSH was 0.03 on T4 only but then I had T3 of 3.2. Now I am taking both T3 and T4 my T3 level has gone up to 3.9 but my TSH is now 0.01. I have been looking online and all I can find is stuff that says low T3 can cause strokes / heart problems etc. But I have to convince my endo of that! :)

  • That article did not impress the endo I saw two days ago ,Toft just one bloke' s views .Total waste of time .my residual symptoms must be something else despite not having them before.No idea what though.

  • Maybe his interest is in diabetes rather than the thyroid gland. Dr Toft is the Queen's physician when she is in Scotland, so he is not 'just another doctor'. I don't always agree with Dr T but we can pick and choose what's best for us.

    Why is it that they have no qualms about suppressing the TSH in someone who has Thyroid Cancer but if hypo with clinical symptoms remaining, wont increase. There is an anomaly isn't there. I have not read anything that says the person with Cancer of the thyroid gland drops dead because they take a suppressive dose.

    This is an article. If you want to get well you have to take control and not be dictated to if you still have clinical symptoms which doctors ignore. We- can develop other diseases if our thyroid hormones aren't at an optimum - that means no clinical symptoms not the whereabouts of the TSH.

    Is he aware that too low a dose can cause other more serious problems? I doubt it. Go to the date October 20, 2004 on this link to read the answer and March 24, 2004

  • Thanks for the links.No,he lists thyroid first and denied it was complicated! I am drafting a letter to him to tell him he is not treating symptoms but the charts despite his claims to the contrary. and for what it's worth ,will copy these links.

    Wife does not agree" It will go on your record" . Am I bovered?

  • Well, this is another link. You see, I think unless they have a thyroid dysfunction themselves or a member of the family has it, they only have a theoretical knowledge. Whereas we have a full-on,"what the blazes is going on with me".

    Because I was having heart problems and eventually was kept in overnight in the A&E having a battery of tests and discharged with 'probably viral with a high cholesterol'. I cannot explain how at 'death's door' I felt. I had seen around 10 doctors before over 3 years and paid for two ENT specialists - one who said I had 'acid reflux' and the other told me(after a barium swallow) that I would choke to death if I didn't have a particular procedure. I had the procedure only to be told when I came round, that there was nothing there. I demanded another test to see if whatever they saw was still there and it was denied.

    After being discharged from the A&E as 'probably viral' and felt I was dying, a non medical person suggested a 'thyroid problem'. I immediately had a blood test, the only one ever done by any of the medical professionals and my TSH was 100. I was glad to take the 25mcg levo (far too low) and the next stage had begun - another prolonged ill-health. I asked myself 'how can I be so ill when I am on medication'.

  • My TSH has been suppressed since I was on 75mcg levothyroxine. When I was last tested, I was on 125mcg levothyroxine and my results were TSH <0.02 (0.35-6) FT4 19.3 (9-26) . At that point the GP wanted to reduce my dose, but I refused on the basis that I did not feel over-replaced at all. I find it's a kneejerk reaction from GPs - suppressed TSH, reduce the dose! My TSH was suppressed when my FT4 was only 14.1, so in the bottom third of the reference range, so I tend to regard it as not very reliable anyway.

    OP, does your endo not realise that T3 will suppress TSH anyway?

  • Ha! I mentioned this and he disagreed. He says supressed TSH means my body doesn't need any more T4 converting to T3 and that "perhaps it is time for me to accept being a little overweight, slow and tired" How can you reason with that attitude.

  • He talks Rubbish. We have the experience. We take the hormones. We know when we feel well. We know how awful it is to be unwell, yet be told our 'TSH' is in range and all other tests 'normal' etc. etc.

  • Have you seen this graphic? It explains, with references, why it's nearly impossible to have a normal TSH while on thyroid medication.

  • This is brilliant. Thank you!

  • You're welcome. Hope you can use it to get a dose increase!

  • quiridalady, maybe this will help :

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