Very disappointing blood test results!

I have Hashimotos, and my last blood test result for TSH was .020 which was way too low, so GP suggested that I reduced my thyroxine from 125mcgs to 100mcgs. I was unhappy doing this, as I was concerned that symptoms would return - severe fatigue, aching muscles and joints - so we compromised and I agreed to take 100 and 125 on alternate days. Within a week I felt like hell, all symptoms had returned, as I had predicted, so I discontinued the 100mcgs, and just continued with 125mcg daily again. And I continued to feel 100% well. When I needed a repeat prescription in Dec, I did write letter for GP, explaining the situation. Today I had TSH tested at work, results = Undetectable. T4 too high at 25.4 too. I know my GP is going to tell me to reduce thyroxine again, and same thing will happen again. Endo I saw in Oct just said reduction in thyroxine and symptoms returning were just coincidence, and discharged me on first and only appointment!!!!! Any suggestions anyone, as I am getting perilously close to the end of my tether.Thanks.

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  • If you have the little BMA book 'Understanding Thyroid Disorders', you could show this bit to your GP, which is on page 94 in my copy. Not all GPs will take notice of this, but some do, so it's worth a try.

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    Q. I feel better when I am taking a higher dose of thyroxine than recommended by my doctor. Is this safe?

    A. There is considerable debate about the correct dose of thyroxine. The consensus is that enough should be given to ensure that levels of T4 in the blood are at the upper limit of normal or slightly elevated and those of TSH at the lower limit of normal, or in some patients undetectable.

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    Book is available from high street and supermarket pharmacies, as well as online. Amazon link: amzn.to/zQ7dVm

  • OMG, that is so useful. I will definitely purchase it, and show him!!! Thank you soooo much xxxxxxx

  • I think we know our own body better than the doctors. This is an extract from an article in Pulse by Dr Toft wherein he says it is o.k. to have a suppressed TSH and he even said some need the addition of T3 to a reduced T4. If you would like a copy email Louise.Warville@Thyroiduk.org. I have also taken two points from Dr Lowe and cursor down to 25th January 2002 to read the whole reply.

    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).

    Dr Lowe:-

    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.

    2.

    It takes little cognizance in clinical practice to realize that this dose rarely is enough to keep a patient's metabolism normal. And rarely is this dose enough to free a patient from symptoms of abnormally slow metabolism. If patients are going to have normal tissue metabolism and good metabolic health while using T4, most of them must take a dose that suppresses the TSH level. It’s this fact that mainstream doctors need to come to understand, if they’re going to stop keeping their hypothyroid patients ill.

  • The correct dose of thyroxine is what makes you feel better and is not likely to tally with blood test results. Suppressed TSH is fairly common to patients taking any sort of thyroid medication and is not harmful. Go by how you feel, not by blood test results.

  • Thanks to you all for your help. Just have to convince GP now. x

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