how many of us are many of us under-medicated-e... - Thyroid UK

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how many of us are many of us under-medicated-even with normal levels ?

JS33 profile image
JS33
5 Replies

Hi all ,

It's been around three years since diagnosed hypo, and after starting on levothyroxine and enduring the NHS approach I moved to thyroid -s fairly quick.

I am sure most would agree , blood hormone levels are controversial and can be confusing , with many people told they have normal levels , accepting this and continuing to feel hypo. Of course there is always the issue of continuing decline in thyroid function and output , and the Hashimotos disease itself making us feel ill and contributing to the swings in levels , but for me , raging hypo symptoms told me there was a need for more hormone despite what the outer world said .

Since moving onto thyroid -s I have had numerous blood tests at various doses. I have been on a dose of 3 grains with normal or slightly high hormone and low tsh levels, but more recently I climbed to 6 grains with still low TSH , and lowered , mid range t4 and t3 .

I have come to my own conclusion about what is happening with me. What I have witnessed overall is that my body does it's best to function with the hormones it has , and after years of trying to survive with very little , it doesn't take much of an increase for it to think it has an excess or that the gland has dumped too much again due to the hashi's. Basically the body is being rationed to not enough , and enough is considered an excess and not immediately taken up - until it has been received long enough for the body to know it can depend on it .

However , if instead of cutting the dose ( as ordered by alarmed doctors ) when after 6 weeks the bloods come back as hyper (high levels ),if I continue on that dose , I find the blood hormone levels come down over time, even though the tsh may stay the same .

So , as I understand it , what is needed by the body isn't what is used first off when starting meds.

As a layman , maybe the body has adjusted to stop taking up the hormone due to the deficiency , and the TSH goes low because there is more hormone than the body wants to take up , even though it does need more.

What I have noticed is the improvement in the dry skin , hair loss, sleep etc.

My symptoms were terrible on 3.5. grains , and with a tsh 0.01 was told by doctors you're too high.

I have ignored them , my skin is better , my hair is better , I am better , but still a bit to go.

Been far enough to know which way is the wrong direction.

P.s on holiday I Cambodia , Blood tests cheap - $23 for t4 , t3 , tsh and cholesterol

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JS33
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helbell profile image
helbell

Relying on TSH as the gold standard seems to be coming into question by even some of the top thyroid experts. The TSH test is extremely sensitive but we seem to vary hugely - some folks are walking around on a sky high TSH while others are in meltdown over 2.

I found your rational for the discrepancy in uptake and levels post post reaching titrated replacement threshold thought provoking.

Look forward to more comments.

humanbean profile image
humanbean

When people don't have enough thyroid hormones a common effect is that the body makes extra cortisol and adrenaline (the stress hormones).

In theory the body will reduce production of the stress hormones when the thyroid hormone levels rise. But in some cases the body won't reduce. The combo of thyroid hormones + excess stress hormones makes people feel over-medicated, raises blood pressure, raises heart rate, sometimes very significantly.

If your body is obliging it will reduces stress hormones when you raise your thyroid hormones. But there is a possibility that you may end up over-medicated and have to reduce, once your stress hormones drop to normal and stay down. If you are in control of your medication and dose then I would suggest you stop worrying about TSH and concentrate on Free T4 and Free T3. You don't want either of them going sky-high.

I have problems with high stress hormones. I am convinced that my thyroid has been under-performing since childhood and I lived on my stress hormones, so my body adapted to this (badly). When I finally started treating my thyroid it took me ages to raise my dose of meds high enough to feel well, and it takes very little stress to make things go pear-shaped. I now take Holy Basil every day to keep my stress hormone levels down. This allows me to tolerate enough thyroid meds to keep my T3 off the bottom of the range.

ilenuca profile image
ilenuca in reply to humanbean

Interesting theory about stress hormones...i increased my dose 2 weeks ago and i have palpitations every day. What form of basil do you use? The plant or something else?

humanbean profile image
humanbean in reply to ilenuca

I take these :

amazon.co.uk/Swanson-Spectr...

If they interest you do shop around. The price and availability of them fluctuates dramatically and the current price on Amazon is high. When I last bought them they cost between £5 and £6 per bottle. I've never tried any other kind of Holy Basil supplement.

I'm currently taking 4 capsules (i.e. 2 capsules, twice a day), but my dose has ranged from 8 capsules a day down to 2 capsules a day.

I should point out that some time ago I did a saliva cortisol test which showed my cortisol levels were high. If someone had low cortisol and took something which reduced it further they could get into all sorts of trouble.

trelemorele profile image
trelemorele

I like your post. I have had similar body feedback 're thyroid meds -> high, low, overdosed, underdosed etc so can relate.

Thanks for sharing.

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