Low tsh, lowish T4 & T3, unwell & don't know what to do

Hello,

I am new to this site. I have been unwell for several years. I was originally diagnosed with CFS, then later diagnosed with hypothyroidism but haven't felt well in all this time. I take 100mcg thyroxine daily and am currently seeing an endo as a GP at my surgery was thinking about dropping my thyroxine dosage because of my low TSH and I knew if I dropped, I would feel worse. My latest blood test was a couple of months ago and showed a TSH of 0.11, T4 was 13.5 and T3 was 4. The endo has run various tests for other conditions but all the tests I have had have been normal. I have asked endo if I could try a different type of treatment like natural dessicated thyroid to see if it made any difference to my health but he was dead against it. He said that very very occassionally he gives patients a combination of synthetic T4 and T3, but this is rare and said it would be hard to monitor due to my low TSH. I get the feeling that he is not going to change my medication but I still have hypo symptoms and it's getting to the point now where something seriously needs to change. I need a quality of life that I don't have now. I am constantly tired, weak, swollen, dry etc and I want to get on with my life, I don't want to be held back by my health. I really do want to try NDT or at least a T4 and T3 mix, but I am not convinced that that is going to happen. I don't know where to go from here but would be extremely grateful of any advice anyone can offer. By the way, I live in the Midlands.

Thanks.

4 Replies

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  • Hi,

    Some people definately don't do very well on levothyroxine either alone or at all. It's often a question of trial and error and if your NHS GP is not willing to help, you may need to visit a private doctor who will give you a trial.

    It would also be a good idea to check your B12 levels as although docs often say it's normal, it's very often (in the case of ME/CFS/hypothyroid patients) very low in the range and people have reported feeling much, much better higher up the range. Contact us on enquiries@thyroiduk.org for information on this.

  • Hello,

    Thanks for your reply. Do you know how I would go about looking for or finding a private doctor that might be willing to give me a trial on NDT or combined T4 and T3? I don't even know where to start.

    I will ask for my results from the endo re. B12. Thanks for the tip. I have been taking 1000ug timed release B12 per day from Holland & Barrett for a long time though as I don't really eat meat, so I'm not sure if my B12 would show up as low. But then again, it can't hurt looking and you never know how much your body absorbs, especially being a water soluble vitamin.

    Thanks again for replying. I cannot begin to tell you how much it means to me to be listened to and offered advice!

  • Hi Sammistar,

    We have a list of Private Doctors and Practitioners - send me an email via the contact us page of the website and I'll send it to you.

    Some people don't absorb very well so it's always a good idea to get tested for B12 and D3. Make sure you ask for the range as well though, when you get your results.

  • Thanks again for your advice, much appreciated!

    Sam

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