Hypo/ hyper?

Hi, recently I was put on 100 mg Levothyroxin, after talking with my doctor in Scotland, as I had been feeling tired, sluggish, not sleeping, putting on weight ect:- When I was only taking 75mg. Recently we have moved to South Yorkshire and registered with doctors there and been told after a blood test to drop down again to 75 mg. while I was on the higher dose all my symptoms disappeared and I have been feeling really well, so I really don't want to drop the dose and feel ill again. What should I do?

7 Replies

  • Say no. They are not there to give you orders. They are there to advise you, but if you say nothing, they will take that as consent. Explain that you feel well on 100, and you know you will feel bad on 75 because you've been there before.

    Why did they want to reduce your dose? Just based on the TSH? The TSH is a very bad test to dose by because it rarely reflects thyroid status acurately. To know if you are over-treated you need to see your FT3, but as they will not test it, there is no way they can prove that you need to reduce your dose. Did they test the FT4 at least? If that's very high, then it probably indicates that you aren't converting very well, in which case, you need a high dose of Levo. But even so, 100 is in no way a high dose!

    All I can say to you is, stand your ground. Don't let them brow-beat you or walk all over you. There is a counter-arguement for all the arguement's they can come up with, because - medically speaking - they Don't have a leg to stand on!

  • Thanks grey goose ,

    I'm making an appointment to see doc tomorrow, will tell him how I feel, just hope I can stay on 100 mg. don't want to feel ill again, got very depressed before but feeling much better now

  • I hope so too, for your sake. :)

  • Keep to the dose you were on as you felt really well. Tell your doctor you are not reducing as you have taken advice. Such as Dr Toft's of the BTA states in Pulse online article:

    6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    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).

    Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

    While taking both hormones it is important serum TSH is normal and not suppressed. While taking both hormones it is important serum TSH is normal and not suppressed.

    (We shall ignore completely this last para below)"

    If the patient is still dissatisfied it should be made clear that the symptoms have nothing to do with thyroid disease or its treatment and perhaps issues at home and in the workplace should be addressed.

    If you need a copy of the whole article, email louise.warvill@thyroiduk.org.uk but some GPs pay no heed to it.

    Do you have a print-out of your latest blood tests for thyroid? If not request one (we are entitled and post on a new question).

    Did you take levo before your blood test? It is now recommended to fast as well as having the blood test as early as possible. That's when TSH is highest and GPs place a lot of emphasis on the TSH. Pity they don't know that we feel much better when its around 1 or below. Take levo after your test. If you've not had Vitamin B12, Vit D, iron, ferritin and folate tested ask for these too.

  • 1) NEVER take your levothyroxine within 24 hours before a blood test

    2) get the blood drawn EARLY MORNING and fast beforehand

    otherwise blood results get skewed

    Get copies of your previous results and insist you are restored to the level of levo you were on that gave you those results

  • Good advice given above so just want to add that-I live in South Yorkshire too -you are welcome to pm if you like.

  • Thank you everyone who have replied to me. I appreciate it.

You may also like...