GP wants to reduce my 137.5mcg of Levothyroxine

Had blood test last week. Received letter from GP today he is phoning me on Monday as he says he must reduce my 137mcg Thyroxine. 10 years ago I had to seek the help of a private Thyroid UK listed Doctor as NHS GP wouldn't acknowledge that I had an underactive thyroid. Eventually became stabilised and when I moved house managed to get my new GP to prescrive Thyroxine. Never had a problem for the last 8 years. My TSH is 0.01 and my T4 is 19.0 (has been for the last 8 years). New Drs. taken over the practice and it now looks as if I have another battle on my hands. I feel so well on 137.5mcg and don't want it reduced and I certainly don't want my symptoms back plus the inevitable weight gain. Would appreciate any advice as to how I handle this and keep on my existing dose. Thanks. Brenchley

10 Replies

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  • Perhaps don't answer the phone? When he's been in his post a little longer he'll be very busy! You shouldn't change dose if you feel well. Others will be able to provide you with references of documents that might be helpful to you. Perhaps GP is just covering his back by sending you a letter. You could play for time by asking for a repeat test / losing or forgetting to have the test etc.

  • Thanks will most likely ask for a repeat test if the Dr. refuses to see me personally. Can't get to see a GP here unless you are at death's door!

    Not Very Good. I think they are just covering themselves. Many thanks.

  • He is another doctor who needs to be trained in treating people with hypothyroidism.

    The last thing you want to do particularly when you feel very well is muck about with doses. I will give you a link but you can refuse to reduce your dose. My TSH has often been the same as yours and the Endocrinologist didn't make any changes. If you email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse online article by Dr Toft and question 6 says that some of us need a suppressed TSH to feel well. Dr Toft was President of the British Thyroid Association.

    Read the first and second answers on this link:

    web.archive.org/web/2010103...

  • Many thanks, will e-mail Louise. Didn't realise that I could refuse to lower my dose. Will do so as I can't afford to be unwell, especially as my husband is needing a lot of care at the moment due to cardiac problems.

  • I am sorry your husband is also unwell and I wonder if he's had his thyroid function checked. Just a possibility.

  • Brenchley,

    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)."

    thyroiduk.org.uk/tuk/about_...

    If you want a full copy of the article email louise.warvill@thyroiduk.org.uk

  • Thanks. Am just going to e-mail Louise for a full copy of Dr. Toft's article.

  • Simply refuse, use the broken record method and keep repeating that your TSH is a pituitary hormone NOT a thyroid hormone and you do not acknowledge it as a reason to reduce your meds.

  • Thanks will do.

  • Hi,

    I am a pituitary microadenoma patient. My latest TSH was 0.02 and my FT4 is 14.9. My endo (who I've had to source privately) yesterday upped my daily levothyroxine dose from 125mcg to 137.5mcg (alternate days on 150/125 mcg).

    My endo's view is that because my TSH is suppressed on levothyroxine, it is useless to use TSH as a treatment guide. He would like to see my FT4 go up to an 'optimal range for wellbeing' of 20ish (the upper limit is 22) and whilst he is being guided by the numbers, he is also listening to me and addressing my symptoms. He has written to my new GP to outline this prescription rationale. This GP accepts the advice of my endo, and I feel very lucky to finally be receiving proper treatment.

    My previous experience with GPs over the past four years has not been good, they have all relied on my 'within range' normal TSH results alone. This reliance meant no tests were done for FT4 and FT3 until I insisted, after Internet research on my symptoms. These results showed below range for both FT4 and FT3 with a normal TSH and an MRI confirmed a microadenoma that may/ may not be the culprit. I was finally prescribed 50mcg levothyroxine in November 2014.

    Arm yourself with facts, backed up from the Internet, and if possible get something in writing from an endo that backs up your levothyroxine prescription. There are great professionals out there!!

    Good luck x

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