Current GP trying to reduce dosage of Levothyroxine

My GP keeps trying to reduce my dosage. When I moved to this surgery I was on 175mg. I'm now on 125mg. My joints are seizing up, my weight is my heaviest ever (11st 9lbs and 5'2"), sleeping a lot. Yet my most recent blood test came back "insufficient TSH to detect/test".

I have an appointment with an endo next month and I am going to ask the surgery for copies of all my tests but is there anything else I should be doing?

One thing I'm not too sure of, I was taking a multi-vitamin with iodine - could this be affecting the results?

I also had Breast Cancer 2 1/2 years ago not long after reducing my initial dosage although a mammogram 8 months prior to diagnosis showed nothing abnormal (and was rechecked after diagnosis). I don't think the two are linked, but my GP seems of the opinion that my thyroid has started working normally again!

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  • Hiya. Did your gp do other tests (antibodies, t3, t4, etc)? It's a good idea to get copies of all your tests so you can put your tsh into some kind of perspective. They shouldn't treat you on the basis of tsh alone.

    I'm a little concerned about your gp's theory that your thyroid has risen from the dead. You might ask them if it's working well then why do you feel so tired and achey. They should be testing your t3, t4 and other antibodies and if your thyroid has healed itself, that should be revealed in your test results. And if your tests do show that all is well, they should be looking for what is causing your tiredness and aching. x

  • Thanks for coming back. I think he did do T4 but I don't know what the result was. I'm just fed up that they are saying I'm over medicated but still have all kinds of crappy symptoms. He also had my hormone level tested and he said I was post menopausal but I was on Tamoxifen for a couple of years so that's not a surprise. I did say is that because I'm crying in your surgery and he said yes! Could have smacked him! LOL Also he prescribed Amytriptylene for headaches and I see that has to be noted in conjunction with Levothyroxine. Luckily the headaches have stopped for now so I've discontinued it, but was on it for the tests.

    As to looking for other things, hah! How long is a piece of string? It's much quicker for me to list the things that ARE working!

  • Oh sure, I understand your frustration!

    I get angry when someone posts 'My gp says my high tsh is in range and I'm just menopausal so I went home.' If they think it's menopause/perimenopause/pmt/whatever, okay, that's a start, but at least present a hypothesis of what might happening and what can be done to help.

    If you're overmedicated, sure, that can make you feel awful, but let the tests show it. Your t3 and/or t4 might be above range as well as your tsh being low. But how do they know if maybe your t4 is sky high but t3 low due to a conversion problem without all the info? And if your thyroid has been resurrected (how appropriate given the season) I'd expect the antibodies to be normal - ?

  • Absolutely. Have results (posted below)

  • Ask your surgery for a print-out of your latest thyroid gland blood tests, with the ranges. Did you miss taking your medication before your blood test and have it as early as possible? Taking meds before a blood test can skew results.

    This is a link about adjusting meds only due to the TSH result (people who have thyroid cancer have suppressed TSH's but they are in no danger otherwise it wouldn't be permitted). Read answer to question dated January 25, 2002

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

  • That's brilliant, thank you. It all starts to make sense. On holiday I was eating virtually nothing - two meals a day and very small meals, with a couple of beers in the evening at the most. Got back to find I hadn't lost an ounce - it's so depressing!

  • Have last two lots of results (rest don't mean anything) posted below

  • Blood tests only measure what is circulating in the blood NOT what is working at cell level!! Go by how you FEEL not blood test results and don't be afraid to say NO to lowering your meds Your doctor is an ADVISER not a martinet and cannot MAKE you reduce your meds, the NHS guidelines state that no doctor can change or reduce your meds without YOUR permission!! That also means that if you say nothing you are in tacit agreement with the doctor.

  • I did not know this! Thanks! Test results below.

  • Thank you, everyone, and the links are starting to make more sense to me. I've just called my surgery and they are printing off the last 3 years results for me so hopefully I will get to see how that is going. I'll let you know what they say when I get them back and hopefully someone can advise!

  • Tested 9/7/2013

    TSH <0.02 miu/L - below reference limit.

    Serum free T4 20 pmol/L

    I can't remember what time I had this done, but I think it was about 11.30am. Dosage of 150mg levothyroxine

    Tested 22.1.2014 around 2 or 3pm I believe I had reduced dosage from 150 to 125 two days prior to test.

    TSH <0.02 miu/L

    T4 23 pmol/L

    Also got full blood count, most things seem in the middle of the range give or take. Neutrophils at high end.

    Renal profile - sodium middle of range, potassium bottom end of range, creatinine low middle.

    Calcium - middle of all ranges.

    Folate 16/3 ug/L (4.6-18.7)

    B12 417 ng/L (150-999999.0)

    Any thoughts?

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