feeling unwell of 100mcg

i had a full thyroidectomy when i was 29 and was put on 125mcg which was ok for me no problems, but now im 37 and recently got my bloods checked and they said they had to reduce them to 100mcg which was 2 mnths ago, i feel really tired loosing my hair and getting terrible cramps in my legs and toes,went to see the nurse and told her how i was feeling and, she said that my levels were to high and that its NOT HOW I FEEL THATS IMPORTANT ITS WHAT MY LEVELS ARE SAYING and basically fobed me off, my memory has gone to pot aswell which is worrying,going back next week to get bloods done again to see if they have leveled out.

has anyone else had these problems i would love to know x

4 Replies

  • The worst thing a doctor can do is to adjust the patients thyroid medication because of the TSH result. They have to scientific reason for doing so but it is unfortunate no-one has told them. The main and most important question they should ask is 'how do you feel' and if well leave well alone. If you had thyroid cancer I believe your TSH should be suppressed.

    You can get a booklet from Amazon and it has been recommended by quite a few people and you can point out to your GP what Dr Toft says (he was President of the British Thyroid Association).


    If you can get a print-out of your blood test results, complete with the ranges (your are entitled for your own records) and post on a new question for responses.

    This is an excerpt from an article on Pulse online which you can also show to your GP:-

    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.


    Seeing you had a total thyroidectomy my personal opinion is that you should be prescribed Natural Dessicated Thyroid hormone which contains all the hormones you lack, i.e. T4, T3, T2, T1 and calcitonin but even the addition of T3 would be helpful. The fact that you felt fine on levo there was no reason for changing dose.

    GP's are not well trained in thyroid gland conditions and believe that if your TSH goes below 1 you may have a heart attack. Untrue unless you are so frail you are at death's door.

    This is an excerpt from Dr Lowe who was director of Thyroidscience, Dr Lowe.com and Fibromyalgia Research but the sites are now archived as he died last year. Cursor to January 25, 2002

    Dr Lowe: Your observations don’t suggest to me that your pituitary gland isn’t functioning properly. In fact, your observations are consistent with what science tells us about a patient's T4 dose, her TSH level, and her metabolic health or lack of it. If the goal of a doctor is metabolic health for his patient, he has no scientific basis for adjusting her thyroid hormone dose by her TSH level. If the doctor is going to make the imprudent choice of treating the patient with T4 (rather than T3 or a T3/T4 combination), he should be aware of the relevant physiology and treat her on the basis of it. Otherwise, he's likely to ruin her health, as your doctor appears to be doing to yours.

    The TSH level is not well synchronized with the tissue metabolic rate. (Probably most doctors falsely assume that studies have shown that the TSH and metabolic rate are synchronized. But despite my diligently searching for years for such studies, I’ve yet to find them.) Adjusting the T4 dose by the TSH level is like adjusting the speed of your car by a speedometer that's out of synchrony with the actual speed of the car. Adjusting the speed of a car by an out-of-sync speedometer, of course, will get the driver into trouble—either with other drivers who'll object to the car traveling too slowly, or with a police officer who'll object to the car going too fast. And adjusting the thyroid hormone dose by the TSH level gets most patients in trouble—almost always because their tissue metabolism is so slow that they are sick.

  • Hi, make sure you do NOT take your levo before your blood test.

    I've missed 2 days meds before a blood test before now to ensure my levels are low & my levo is not lowered. It works very well after a TT. Sometimes you just have to fight back.

    I'm not suggesting you do this - just saying I do. ;-)

  • Do you have he results to hand that mad you doctor do this? If so please post them on here together itch the ranges. I not, then pleas get hold of them and the same. It sounds as though you need to go back up again as symptoms are SO much mor important than blood tests when it comes o the thyroid. Xx

  • Shaking head here AGAIN , why the hell they do that !!!

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