Dose lowered

[Sylvia22]

My Levo has been lowered to 112.5 per day from 125. This was a month ago. I have noticed I aM a bit colder brain not quite so alert and now got pains in hips and legs even at night. Usually I sleep well. I have told dr I don't want to reduce but she insists as she says my TSH is too low 0.01 and it is dangerous at my age. I am 74. Was feeling OK but after a month I am getting symptoms of Hashimotos again

[SeasideSusie Remembering]

Sylvia

Was only TSH tested? If so then that's not enough, TSH isn't even a thyroid hormone anyway, it's a signal from the pituitary for the thyroid to produce your own natural thyroxine, TSH will be high if the pituitary can't detect any thyroxine. If you're taking replacement thyroid hormone then the pituitary detects this and doesn't send the signal so TSH will be low.

The important tests are the actual thyroid hormones - FT4 and FT3. Ask for these to be done so you can see your actual hormone levels. You can only be overmedicated if FT3 is over range.

And some information you might want to pass onto your GP, from thyroiduk.org/tuk/about_the... > Treatment Options

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Available on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

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)."

You can obtain a copy of the article by emailing Dionne at [e-mail] print it and highlight question 6 to show your doctor.

You can tell your GP that you have taken advice from NHS Choices recommended source of information about thyroid disorders. Don't mention the internet or forums, it gets their backs up!

I have rather uneducated (thyroid-wise) doctors at my surgery who bleat on about suppressed TSH and osteoporosis, atrial fibrilation, blah blah. My TSH is always suppressed and has been for the past 20 years that I've been keeping a record of my results. Private tests show <0.01 or <0.005 and my last GP test showed <0.02. I actually saw the Nurse Practioner who didn't like the <0.02 result but I pointed out my FT4 and FT3 were both around the 50-60% through range level, discussed the fact that TSH was a pituitary signal and that it's the FT4 and FT3 that are important, and he was happy to accept that I didn't need my dose altered.

[Sylvia22 in reply to SeasideSusie]

Thank you. I have just ordered book and am getting full Thyroid results from Doctor. Will let you know how I get on.

[Sylvia22 in reply to Sylvia22]

Hi have just got my results from before they reduced the Levo.

TSH 0.01

T4 25

T3 4.6

She said she will refer me back to consultant as the Surgery have to go by the guidelines they are given. Enough to make you spit.

[SeasideSusie Remembering in reply to Sylvia22]

When you post results, can you include the reference ranges please, they vary from lab to lab so we need your own lab's ranges to interpret your results

I expect your dose was reduced due to your TSH being low, but when taking thyroid hormone the TSH is actually irrelevant, as I explained above, but doctors don't seem to know that.

I think possibly your FT4 is at the very top of the range, maybe even a bit over range, but it's FT3 that's important and tells us if we're over medicated and I think yours may be in range.

They're just so TSH focused, nothing else seems to get through to them

[Sylvia22]

Makes me feel depressed.