Weight sensitive : Does anyone know if levo is... - Thyroid UK

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Weight sensitive

misswinky34 profile image
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Does anyone know if levo is weight sensitive?? I've been getting symptoms of graves/hyper even though I'm on 150mcg of levo a day, which I have been for years. I've lost 3 Stone since September, but I have been eating a healthy diet and exercise. Is it possible to fluctuate between hypo and hyper? I'm thinking I wouldn't have been able to lose the weight if it weren't working, but have started with rapid heartbeat and major irritability, weight loss and I think my eyes look different.

Last 2 TSH readings were suppressed, but this is usually when I feel most well. Last reading was 0.16 and time before that 6 months previous it was. 0.44 TSH is all my gp tests for. Now I'm not pregnant I've lost my endo consultant. Back to the fight of the GP

Thanks

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misswinky34
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shaws profile image
shawsAdministrator

Has the doctor tested your Thyroid Antibodies? - if not ask him to do so.

If you have thyroid antibodies you have an Autoimmune Thyroid Disease called Hashimoto's (the common name :) ) and it is the antibodies which attack the gland and they wax and wane, sometimes making the person feel as if they are hyper but they are hypo.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Treatment for hashi's is the same as for hypo.

misswinky34 profile image
misswinky34 in reply toshaws

Hi yes they have tested the anti bodies, they were under the threshold for what they consider raised, and my notes say I'm sub clinical. I'm wondering because they have only ever tested them once if that figure has changed at all.

Thanks

greygoose profile image
greygoose in reply tomisswinky34

Could well be. Antibodies fluctuate all the time. And even if your antibodies are tested frequently and always within range, it doesn't completely rule out Hashi's, because not all Hashi's people develop high antibodies.

Your notes say you're sub-clinical what? Hypo? Or Hashi's?

greygoose profile image
greygoose

It's not possible to be hypo and hyper at the same time, but it is possible to have hyper and hypo symptoms at the same time. And, whilst it's not possible to flip from hypo to hyper, it is possible to be over-medicated. But, your TSH won't tell you that.

Once you are on thyroid hormone replacement - levo - the TSH is irrelevant, and can go as low as it likes, it doesn't matter. Although 0.16 and 0.44 is not suppressed - 0.44 isn't even below range. If you want to know if you're truly over-medicated, you need to see your FT3 result. That is the most important number, anyway. :)

misswinky34 profile image
misswinky34

Do you have to request that test then? Or is it part of the TSH? When I called to speak to the doc about it, they just shrugged it off. I've noticed on here. Alot of people being advised to have all sorts of other things checked, vit b and ferritin and things like that. My GP doesn't entertain any of these. He said the. Only thing they are interested in is TSH 👎

greygoose profile image
greygoose in reply tomisswinky34

The TSH is the TSH and the FT3 is the FT3. Two different tests. And, it's very hard to get the FT3 tested on the NHS, even if the doctor requests it, the lab is likely to refuse. It's all total nonsense, of course, and just under-lines the general atmosphere of ignorance. So, many, many people get private tests. You really can't tell anything about your thyroid status from the TSH alone. I'd be tempted to say to your doctor 'be careful, your ignorance is showing!' :)

misswinky34 profile image
misswinky34

Sub clinical is what the paperwork says. Started of on 25mcg and within 2 years I've gone to 150

greygoose profile image
greygoose in reply tomisswinky34

Yes, but surely it specifies sub-clinical what. You can't just be sub-clinical, end of. lol

Doctors don't actually understand the true meaning of sub-clinical. It should mean : abnormal blood results but no symptoms. They use it to mean : plenty of symptoms but TSH under ten, so refusing to diagnose!

misswinky34 profile image
misswinky34

I've only ever had anti bodies tested once four years ago in 2014 when first diagnosed.

greygoose profile image
greygoose in reply tomisswinky34

Most doctors don't like testing antibodies because they don't understand what they mean.

misswinky34 profile image
misswinky34

Thanks for your help 😊

SilverAvocado profile image
SilverAvocado

Misswinky34, to answer your first question, yes weight does make a difference. Thyroid dose is often reported as an amount per kg of body weight. Having lost 3 stone it's very possible you could be over medicated on the same dose.

TSH is useless. Can't imagine what your doctor thinks they will see in the TSH to tell them you're over or under medicated!

You could get a mail order, pinprick test if you like, to see what your freeT4 and freeT3 are like. Or if you felt completely well before you could base your decision entirely on symptoms and reduce your dose 25mcg and see how you get on.

misswinky34 profile image
misswinky34

Thanks, makes sense! 👍

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