Does anyone else with a TT survive on this dosage?

I feel like I am in the middle of a game of 'how low can you go'.

I had a TT in January and was started on Levo - gradually got this up to 137.5 and then had to start backing down the scale as I was showing signs of HYPER. So I got down as far as 112.5 and had a TSH of 0.016 and racing heart still so they changed me from Levo to Euthyral 100 T4 and 20 T3 (combined med). After a month my TSH was even more supressed, my T3 virtually top of the range and my T4 just below middle range. Heart still racing!

So now I am on half that dose - so 50 T4 and 10 T3 - does that sound rather low to anyone. I am tall and not light, I seem to be taking less than people half my size with a partially functioning thyroid. I have no thyroid and such a small dose! What do you think? I have to have another test in 4 weeks.

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  • I have created a spreadsheet which can be used to produce a very crude initial estimate of likely thyroid hormone requirement. It covers T4-only - so cannot be directly applied to combination therapies.

    dl.dropboxusercontent.com/u...

    Do bear in mind that rate of absorption varies considerably. Usually estimated to be somewhere around 80%, all sorts of factors can affect that. I suspect that some people on high doses simply have low absorption rates. Mind, other factors like taking it very close to meals or various medicines and supplements can also have a major effect. And we all vary!

    Rod

  • Hi. I had a tt in February and was started on 100mcg levo. I'm now on 112.5mcg and have a suppressed TSH but feel well. I'm 5ft 4 and 67 kg. My mum had the same operation 10 years ago and is the same height and weight yet is on 200mcg Levo and she has mid range blood results. So, yes your dose does sound low, but some people don't need much at all. I would go by how you feel. If you feel well on 50mcg then it's ok for you. I don't know about the t3 but maybe that is working better? Another friend had the same operation in Hong Kong and the starting dose is 50mcg there and she has been on 75mcg for 3 years with no ill effects. Good luck!

  • Thank you for these replies. I guess there is just no 'normal' anymore.

    I still don't feel well but just wonder where they can go - they cannot keep reducing my dose for ever!

    No doubt time will tell.

  • I wonder if you could be unable to use the thyroid hormone for some reason, such as low iron levels or wonky adrenal function. That would give you hyper symptoms despite still actually being hypo. This page may be helpful: stopthethyroidmadness.com/n... It's about medication with T3 in it but I personally initially had problems taking even tiny doses of T4 and I think that was because I'd been hypo for such a long time that my adrenals were a mess.

  • As you had a total thyrodectomy then it would make sense that you would need all the thyroid hormones replacing not just T4 & T3 -there is some dispute over this -others might not agree with me! However Dr Peatfield argues the case for taking all the thyroid hormones -including T2. This can be done through a natural desiccated thyroid hormone though they don't state the amount of the other thyroid hormones contained in their products apart from T4 & T3 as they are not required to do so.

    I have not had a TT so I probably am not the best person to comment further really as I am sure others who have been through this process will offer advice.

    The other thing you can do is to make sure that you have all the vits and minerals known to help with thyroid hormone uptake in place and running at the top of the reference levels -it really does help. this is your B12, iron, vit D, copper, & zinc.

    I agree with Rod re absorption rates -personally I thought mine was due to poor absorption of B12 and had to take a higher does of thyroid meds until I corrected it- having said that recently my dose has crept back up despite increasing the B12....ah well! You need to go on how you are feeling, the signs and symptoms that you have -Thyroid UK have a good symptom sheet checker. Your docs will more than likely go on your blood tests and little else unless you are lucky.

  • A friend of mine had a tt in the 1970s she seems to be just fine with 75mcg of levo only and im on 200-150mcg alternating and i still have mine and i know i couldnt function on 75mcg, everyone is just very different

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