So.. Could do with a little advice on what to do next

11 years ago I was diagnosed with M.E. Then in the last 3 years became worse. Had thyroid tests last September which found my TSH was about 5.8 and I had very high antibodies on the Tg test. So my then GP decided to trial me on levothyroxine, 25mcg and then increased January to 50mcg. Anyhow got test results this morning and another GP rang me to say that my Free T4 was way too high at 28 and that my TSH was 0 and wants me to lower it again to 25mcg. I dont know what to do now as I felt I was just getting somewhere. I asked if they had done free T3 and he said not that he was aware of. So I am wondering as still have only little knowledge on the subject, but could it mean that I am not converting T4 to T3? and if I have suspected antibodies, doesn't hasimotos swing between Hyper and Hypo anyway?I was thinking of going back in to see my usual GP to have a chat, but I wanted to have some knowledge about it before I went in. I haven't had any Hyper symptoms by the way. I am seriously thinking about trialing NDT instead and seeing how I go? So just wondered what you guys thought and if you could answer my questions. Thanks

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  • Did you take your Levothyroxine before your blood test? If you did this will have skewed your results and your over range FT4 may false.

    Continue taking 50mcg until you can go back to your usual GP. Ask to continue on your current dose as you are feeling an improvement in your symptoms. It is important to treat the symptoms not the test results. Make sure you take your Levothyroxine after your next blood test. TSH is usually highest early in the morning (handy for avoiding dose reductions).

    If you weren't converting FT4 to FT3 I doubt you would notice an improvement in your symptoms but the FT3 test is the only way to be sure.

    You are correct in thinking that Hashimoto's can swing you from hyper to hypo and back and it may be that your thyroid has sputtered back into life and you are temporarily over medicated although you do not feel hyper.

  • I am just trying to remember, but I don't think I took it just before my blood test.

    I will try and ask my GP about having the Free T3 test.

    So if with Hashimoto's it can swing at anytime the other way, how do you go about monitoring it? I mean how often do you have the blood tests? or do you just get to know your own body and alter your dose according?

  • At the point I was diagnosed with Hashi it also transpired I had thyroid cancer so the gland was whipped out. Hence I didn't get to manage Hashi's.

    Thyroid Function Tests should be done 6-8 weeks after changing dose, then every 6-12 months once dose is stabilised.

    Levothyroxine will dampen the pituitary gland's output of TSH which will stabilise thyroid production and prolong the life of the thyroid which will eventually be destroyed by Hashimoto's. Every now and then there will be a lymphocyte attack on the thyroid which will flare up causing hyper or hypo symptoms and a TFT should be requested in order to review over/under medication. In time you'll recognise the symptoms and can adjust meds and request TFT accordingly. It can take up to a couple of years to optimise meds so you're going to need a lot of patience.

  • Can I suggest that you read a book called "Hashimoto's thyroidosis; lifestyle interventions for finding and treating the root cause" by Izabella Wentz. I have read quite a lot on the subject and this one is very good and quite new so it has a lot of up to date research. I would also strongly recommend that you look at adrenal function, that looks like it could be the cause of many of your symptoms. also, please know that whilst your GP is doing his / her best; their knowledge on this subject is a LONG way behind current research, you will need to educate yourself in order to educate him / her! this can all be very overwhelming, start with the stuff you can control like finding food allergens and supporting your liver and adrenals, the rest will unfortunately take time! good luck!

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