Weight : When I told my Doctor I'm concerned by... - Thyroid UK

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Brigland27 profile image
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When I told my Doctor I'm concerned by the weight I've gained since starting on levothyroxine & I was surprised by his reply->" your meant to lose weight on levothyroxine" .....tell something I don't know Doc

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Brigland27 profile image
Brigland27
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SlowDragon profile image
SlowDragonAdministrator

as per your earlier post today, please get FULL thyroid and vitamin testing done

You may be on inadequate dose Levo for your weight

healthunlocked.com/thyroidu...

You will only lose weight or at least stop gaining more when you are optimally medicated. Levo certainly isnt a magic bullet when it comes to weight loss and some people will continue to struggle with their weight, even when blood tests seem to show you are on a decent dose.

Even then blood tests only show the levels that are circulating in your bloodstream. Not how much is getting into your cells. Doctors have some very weird ideas about hypothyroid, they believe that being hypo only causes minor weight gain. But then they arent the ones living with it.

Brigland27 profile image
Brigland27 in reply to Sparklingsunshine

This other Doctor who isn't even my Doctor overiding my actual Doctors opinion to raise my dose up by 25mg her excuse being my blood tests were normal this time..I didn't fight it as I'm dealing with professionals I like to think they know best

Sparklingsunshine profile image
Sparklingsunshine in reply to Brigland27

Well I'm afraid you'll have to fight if you want to get better, thyroid disease is poorly understood and poorly treated, not just here but elsewhere.

It may surprise you to know that during med school prospective doctors spend an afternoon covering the entire endocrine system. Of which thyroid is just a part. You cant rely on them to know best, you know best as you are the one inhabiting your body 24/7.

Not them. You know how you feel what you can or cant do, how your body has changed, how you were pre hypo. At the end of the day you know best how you feel. A doctor might know on an academic level but its very different living through it. Doctors also get to wash their hands and walk away at the end of the day, its no skin off their nose if you are well or at death's door.

This is by far the busiest forum on HU, that tells you that we have a lot of poorly served thyroid patients who are battling to regain their health in the face of medical ignorance, arrogance and general couldn't give a tossness. They really dont know best.

HandS profile image
HandS in reply to Sparklingsunshine

A perfect summary of thyroid ‘treatment’ - and your brilliant last 3 lines apply to many other areas of ‘health care’ too……..

inthedoldrums profile image
inthedoldrums

My case may not be the norm but when I started on Levo, they whacked me straight on 100mcg which was too high for me as my system was on overdrive for a couple of years before I was forced to stop. I put weight on, was speed walking long distances each day and had to go to the toilet to poo urgently several times a day. I can only assume the weight gain was due to the cortisol link in thyroid /adrenal axis as I think cortisol increases weight.

As I say this may not be the case at all for you but it is another more unusual angle. Best wishes to you and I hope you find a resolution.

greygoose profile image
greygoose

Actually, levo itself is not going to make you lose weight because levo is T4. T4 is basically a storage hormone that doesn't do much until it is converted into T3, the active hormone. And we're not all very good at that. But, the only way to find out how well you convert is to get your FT3 tested at the same time as your FT4 and compare them. But the NHS rarely does that, you probably have to get private testing. But if you're a poor converter, and your FT3 is too low, it doesn't matter how much levo you take, you won't lose weight.

As for professionals knowing best. I'm afraid that is rarely true where thyroid is concerned. And there's no such thing as 'normal' with thyroid blood test results. By 'normal', she just meant that the results were somewhere within the ranges. But it isn't about just being in-range. It's about being in the right place within the range to make you well. And doctors just don't get that.

Jazzw profile image
Jazzw

I didn't fight it as I'm dealing with professionals I like to think they know best

When it comes to thyroid issues, I’m afraid finding a doctor who really knows that they’re doing in that space is like finding a Willy Wonka golden ticket.

They will tell you TSH is all that matters. They will reduce your levothyroxine dosage on the basis of a test that doesn’t even directly test how much thyroid hormone is in your blood stream. They will completely underestimate how important it is for your Vitamin B12, folate, ferritin and Vit D levels to be optimised in order for your body to maximise how well it uses the levothyroxine you’re taking and how well your body is able to convert T4 to T3–the active thyroid hormone.

Every now and again, someone will post about having a great doctor who understands thyroid conditions. But it’s very very rare.

Regenallotment profile image
Regenallotment

I put on 12kg between 25mcg and 75 mcg and it slowly came off at 1kg a month after 100mcg T4. I then plateaued a bit and tried T3 and lost a little more but notice that if my FT3 is too high I actually gain weight. There is an optimal spot where I eat healthy, do a bit of exercise and have a good balance keeping about the same, doing a short weights routine (following Dr Gabriella Lyon) and starting small with body weight only and working up slowly has improved my muscle tone and slimmed me, although I am heavier on the scales I’m in smaller clothes. So have stopped weighing myself 🤣

Definitely do as they say, know your own FT4 and FT3 💪🌱

blondpalomino profile image
blondpalomino

Doctor's don't understand the thyroid, I usually have to tell my Doctor how things work! That was in the past, as I haven't seen her for years, haven't even had a phone call, just get a blood test every year and she puts the result on the website. I think some of them think you want T3 as it can make you lose weight, but it hasn't worked that way for me. I have out on 2 stone since my thyroid removal, and nothing will get it off, I even had food poisoning for a week and didn't eat anything, but still didn't lose weight!

Raucous profile image
Raucous

There is lots of good advice in the replies about getting full testing done - the NHS will never do this for you. I had the same experience on Levo, they wouldn't up my dose beyond 100mcg but I had weight gain, endless tiredness, joint pain, hideously heavy periods, headaches, brain fog etc. etc. When I told my GP my symptoms she put some down to age (I was 40!) and offered me anti-depressants but said my TSH was fine.

it was 10 years before I started reading up, doing my own research and getting full thyroid panel - I discovered lots of things but because my free T3 was low I decided to try NDT.

It doesn't work for everyone and it is quite a leap to self-medicate, but within days I felt like a different person, I started to lose some of the weight and had the energy to stay awake all day. It isn't the only change I had to make but for me it was a godsend and I just wish I had done it 10 years before!

It was 10 years

Sparklingsunshine profile image
Sparklingsunshine in reply to Raucous

Dont you find it " funny" that they can diagnose menopause, depression/ anxiety or health anxiety on symptoms alone, usually swiftly followed by a prescription for happy pills, but thyroid symptoms?

No chance, no your TSH is in range so its clearly not that, so it must be psychosomatic. Who knew the power of the mind could cause heavy bleeding?

Raucous profile image
Raucous

Good point I hadn't thought of it that way! it's totally illogical

Sharoosz profile image
Sharoosz

😅🤣😂 You can tell your doctor I've gained about a kilo/year since I've been on Levo. 16 years and it sure adds up. The only time I lost anything significant was a couple years ago when my husband and I caught covid. We hardly ate for two weeks and we both lost 7kg. Unfortunately they found us again...Can't remember the last time I saw a good doctor. Are there any left?

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