Supressed TSH and end of tether

My last blood test ( they will ONLY do a TSH test despite requests for FT3 and 4) was TSH 0.06. I have been on alternate 125 / 150 levo and feel a bit better.

Now she wants me to reduce to 125 daily and only have 150 twice a week to get this raised again. Although the DR can 'see where I am coming from ' and 'recognises that the TSH is not the best indicator' she is bound by the rules .She will not prescribe T3, the endo will not see me as my levels are normal. I would change doctors but only if I can find one that will help me in Glos / Oxon.

I have no idea what to do now. Can't afford to go private or have private tests done. This has been going on for over two years with the Levo saga being raised and dropped.

Am going to try a Nutri Vit supplement and maybe Asgtawanga, does anyone have any other suggestions???

Thanks in advance.

6 Replies

  • Cal1971, your GP may be prevented from ordering FT4 and FT3 tests due to practice or CCG protocols which are NOT in the best interests of patients but she isn't obliged to titrate your dose to force your TSH into range.

    Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    Email if you want a copy of the full article to show your GP.

  • I don't think the Endo won't see you if your levels are normal. They are only 'normal' due to your level of medication, which your doctor wants to change (therefore devaluing her argument that they are 'normal'!). When I had this situation, I refused to decrease and insisted on being referred to an Endo. You are within your rights to ask for this on symptoms alone I think. If your GP refuses, maybe see someone else? Hopefully the Endo can then test T3/T4 and you can get a clearer picture?

  • Hi

    Personally I would not accept the "endo will not see me as my levels are normal" spiel. I think you are being fobbed off there.

    If they are normal levels, why do you feel unwell?

    Also, if the FT3 & FT4 aren't being measured, you've no idea if you're one of those people who genetically cannot convert T4 to active T3, because they are lacking the relevant enzyme . That often explains why people feel unwell despite having normal levels of T4& TSH.

    Good luck xx

  • Never reduce your meds based on blood tests alone, ever.

  • The doctors should be testing your hormones not the pituitary gland but then we all know that it's difficult to get the FT4 and FT3 tested, especially if the laboratory refuses to do it even if the doctor requests it. As your TSH is low, then they really should test further.

  • Can you just self-treat? Lots of people got fed up with being at the mercy of doctors. To me it's not worth the stress of interacting with them... not to mention putting my life on hold while they micro manage blood test results that make not a whit of difference with symptoms. Thyroid is very safe if you increase dose slowly (every 6-8 weeks) and monitor your pulse and temperatures.

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