Hypothyroid Patient Experiences Survey Closes Sunday 9th August

If you want to help change how hypothyroidism is diagnosed and treated in the UK please spare 15-20 mins to complete the survey. Members who were previously hyperthyroid and are now hypothyroid can also take part.


The survey is limited to UK residents and please feel free to share on social media sites.

4 Replies

  • Thanks for pointing out those with hyperthyroid and are now hypothyroid through RAI can take part. I had assumed as I was only hypo for a few weeks following RAI that it wasn't relevent.

  • Clive, you are hypothyroid now, so it is relevant. It took ages to get it through to my sister that she is no longer hyperthyroid and is now hypothyroid :)

    How are you feeling now?

  • Clutter - thanks for the reply. I filled in the survey yesterday and lets hope it makes a difference sometime down the line. There has surely got to be change and common sense will prevail?

    You kindly commented on my first post about 3 weeks ago :


    Since then I have been taking the B12 and B complex, as you suggested.

    I saw the consultant last week - who quite frankly I'm not even a little impressed with - as amongst other comments, he said the TSH test on it's own "is more than adequate" when I suggested the full range of tests which I had had done. He didn't even ask to see them.

    The Purified Thyroxine did seem to improve my rash. It gave me many of the hypo symptoms and palpitations that I had soon after my RAI 20 years ago. I don't think it had any thyroxine in it! A week back on my normal dose and I'm ok again. It was not fun.

    As I need to avoid Levo he has written a letter to my GP asking him to prescribe Armour Thyroid. I'm seeing the GP on Wednesday.

    The NHS website says about Levo " if you are not able to take any of the ingrediants in your medicine talk to your prescriber to see if they can suggest an alternative medicine".

    With the consultant letter I hope I can get NDT on the NHS. If not, then at least the GP will know why I will be buying NDT and won't have to lie to him that I'm still taking Levo and actually be self medicating.

    The consultant said he would issue me a private prescription if my GP failed to agree to fund on the NHS. He said to stop my 150mcg levo and take 1 and a half grains of Armour. I said I had read on Thyroid UK to reduce my levo, start on 1/2 a grain and was told "they are an absolute nonsense of a website"!

    My plan is to go down to 100 mcg and take 1/4 grain am and 1/4 pm for 14 days. Then reduce by 50 mcg and take 1/2 am and 1/2 pm for 14 days. Then stop Levo and increase to 1 grain am and 1/2 pm for 14 days. Then 1 grain am and 1 pm for 6 weeks and then having a blood test before increasing or decreasing (or staying put) depending on how I'm feeling.

    I'm taking my blood pressure - this is usually around 120/80. Heart rate 60/80. So both ok. Temperature however is averaging about 97.5. About a degree less than it ought to be. I'm hoping NDT will see this rise.

    Sorry for such a long message and thanks for your interest. Any comments/suggestions greatfully received!

    Kind regards


  • Clive, Perhaps your endo has seen the wide regard we have for all endos on the forum :-D

    The reason for introducing NDT slowly is in case someone has a an adverse reaction or doesn't tolerate the T3 in it. Increasing gradually allows one to find the right dose without 'overshooting'. You might find 1.5 grains isn't quite enough. Manufacturers claim 1 grain NDT is bioactively equivalent to 100mcg Levothyroxine but from what I've observed that may be an overstatement and 75mcg may be more accurate.

    Good luck with getting an NHS prescription. It might have to be cleared with the CCG. It will help if your endo is NHS rather than private.

    Temperature doesn't always recover when you've been hypothyroid a long time. It can be a sign of overmedication if it rises too much though.

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