How much: I had my thygland removed 14 years ago... - Thyroid UK

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Pepekins profile image
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I had my thygland removed 14 years ago due to a papilliary cancerous nodule, found unexpectedly, so the whole of the gland was removed. I have been on varying doses of levo all this time, with various side effects... none of which I realised at the time, was probably due to the levo. All those years ago, I started on 150mg which over the years has steadily reduced. Now I am on 100 mcg for 5 days and 125mcg on 2 days. Until recently I was on alternate 125 and 100's. Now since the dose was decreased 6 weeks ago (only by 25mcg tho') I feel quite tired and achey now, whereas contrary to many people's experience I used to have loads of energy with a quick spurt about 10pm in the eve, when I would scrub the kitchen worsurfaces for 15 mins!!! I feeel dopey now, can that happen with such a small reduction in levo? and my legs are really sore. Roughly, for people with no thyroid what would be the optimum dosage? Thanks again for this brilliant site.

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Pepekins
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shaws profile image
shawsAdministrator

Yes, Yes and yes! When doctors dose the patient according to their TSH levels it can spell disaster for some. I shall give a couple of links below but considering our TSH (from the pituitary gland) varies throughout the 24 hours how can they possibly take more notice of the TSH than testing our Free T3 - the Active hormone which enables our body to function.

thyroiduk.org.uk/tuk/thyroi...

hormonerestoration.com/Thyr...

We have to educate ourselves unfortunately, as well as trying to recover our health but we need sympathetic and knowledgeable doctors who take account of our clinical symptoms before they take notice of the TSH.

My personal opinion (I am on T3 only) and I haven't had my gland removed that the very least you should be given is the addition of T3 to your T4. or even NDT (natural dessicated thyroid hormones) which contain all our own thyroid gland would have produced. The British Thyroid Association and RCoP make false statements about NDT which has been in use since 1892 in various forms. The big pharmaceutical companies are very powerful and, through monetary policies, have been able to push the synthetic rather than the natural products.

thyroidscience.com/Criticis...

hormonerestoration.com/Thyr...

The more you learn, the more you'll realise that the medical training of thyroid gland dysfunctions are woefully poor.

ROMM53 profile image
ROMM53

Yes that can happen with such a small reduction in thyroxine. It has a very narrow therapeutic range. If you are feeling undermedicated after 6 weeks on a new regime, go back to your GP for another TFT. Remember not to take your Thyroxine that morning , until after the blood tests , or the results will be skewed.

Re average optimum dose, I don't think there is one, it's all very individual:)

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