If not unwell is starting to take thyroxine a m... - Thyroid UK

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If not unwell is starting to take thyroxine a mistake ???

cbenn0 profile image
7 Replies

routine test suggested benefit from thyroxine medication. each subsequent test suggested to increase medication. no noticeable change in health. suspect adding thyroxine by medication causes the thyroid gland to react by producing less. it is a one way trip and I am advised it is perilous to stop taking once started. many medications reduce thyroid function but effect of thyroxine medication appears unreported. it seems any higher than average TSH level indicates more thyroxine is needed even if the actual T4 level is satisfactory at test time.

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cbenn0
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greygoose profile image
greygoose

Hi cbenn0, welcome to the forum.

suspect adding thyroxine by medication causes the thyroid gland to react by producing less.

Well, yes, of course it does. Taking thyroid hormone exogenously reduces TSH - Thyroid Stimulating Hormone. Withut the stumulus of the TSH, the thyroid won't produce hormone. But, as you're taking it exogenously, that doesn't matter. Thyroid hormone replacement is not intended to 'top up' the existing levels in your blood, it is intended to replace what the thyroid cannot make enough of.

it is a one way trip

Not at all. Stop taking the levo and the TSH will rise, and the thyroid will go back to making as much hormone as it is capable. The question is: would that be enough to make you well? I imagine not. Or you wouldn't have been diagnosed with hypothyroidism.

I am advised it is perilous to stop taking once started

Well, yes and no. 'Perilous' sounds a bit over-dramatic, but it sure that if you stop taking levo, and rely on the small amount of hormone your thyroid can make, your body will suffer. Every cell in your body needs thyroid hormone to function correctly, and without it, all sorts of things can go wrong, all over your body and brain. So, it's not advisable. But, it won't happen over-night. You won't drop dead the day after stopping it - and I do speak from experience here. It will be a long, slow, miserable decline.

It seems any higher than average TSH level indicates more thyroxine is needed even if the actual T4 level is satisfactory at test time.

That is correct. Whilst the TSH is a very bad indicator of thyroid status when it's under 1, the higher it goes, the more hypo you are. Or, perhaps I should say, the more hypo you are, the higher it goes. Because it's not the TSH itself that is the problem. And, it's not really about the FT4, either. T4 is basically a storage hormone that doesn't do much until it is converted into T3, the active hormone. And, whilst your FT4 could be in a good place - and that doesn't just mean anywhere within the range, which is what doctors mean by 'satisfactory - your FT3 could be low. And that low FT3 will have as much effect - if not more - on the TSH level than the FT4. So, given that - in their ignorance - they usually refuse to test the FT3 because they don't know what it is - we have to trust the TSH.

Of cours, just blindly increasing the levo dose is not the answer, either. But getting doctors to test and prescribe T3 is a marathon not all of us are up to. So, we have to make do with what we can get... or do we? :)

jimh111 profile image
jimh111

It would really help to know your blood test results. An elevated TSH is associated with higher cardiac risks even if you are doing well. It's a matter of degree and what you mean by 'higher than average TSH', a TSH of e.g. 3.0 is fine if you feel OK but if it is above 5.0 it starts to carry some moderate risks.

raglansleeve profile image
raglansleeve

When I was first diagnosed with Hypothyroidism, I didn't think that I had symptoms. After starting the replacement hormones though, things that I hadn't realized were related, were suddenly cured! I had reflux, sore muscles and restless legs, which had all been caused by my condition, but I had always just gotten used to those things and didn't realize they could be cured. It takes many weeks for the hormone replacements to kick in, and then one has to titrate up until the dose is adequate, but at each dose increase (after 4 - 6 weeks or so), my restless legs, reflux and muscle aches started getting better and then resolved completely. So unless you have absolutely nothing wrong with you (thyroid hormones are needed for absolutely every cell in your body), do you really know that you don't have any symptoms?

Brightness14 profile image
Brightness14

My partner has never had any Thyroid symptoms. It was only when he went for his over seventy test that it he was found to have a TSH of 19 and hashimtos too. He has been taking Levo for a few years now and still hasn't any symptoms. He did notice, however, that he has lost nearly two stone in weight without dieting.

raglansleeve profile image
raglansleeve in reply toBrightness14

Weight gain is one of the more common symtoms and here are 299 other ones.

hypothyroidmom.com/300-hypo...

Kowbie profile image
Kowbie in reply toraglansleeve

haha only 299 ,

Brightness14 profile image
Brightness14

I know I have no thyroid and as soon as mine was removed and I was put on Levo I put on 10 lbs for the first time in my life. For the past seven years I am on NDT with no weight gain.

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