Thyroid weigh gain - blame glucosaminoglycans - Thyroid UK

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Thyroid weigh gain - blame glucosaminoglycans

AnnaSo profile image
39 Replies

Hi everyone,

As I am still on the quest to understand my swelling I started to look at polish publications (I grew up in Poland). I came across an interview with a endocrinologist in a national newspaper which was so brilliant in explaining what thyroid issues are, the weight gain part struck me in particular, see below.

“Weight gain comes mainly from water, not from fat. Symptoms of hypothyroidism can affect many organs and be different, but the cause is one: decreased metabolism. In various tissues, glycosaminoglycans accumulate in excess. These substances together with other ingredients of the skin prevent evaporation of water. When there are too many of them, swellings form in the body and the patients gain weight.

Characteristically, these swellings persist regardless of body position and time of day. If they have been formed on the ankles, lifting the legs up will not make them disappear. Patients with circulatory insufficiency often also have swelling, but they disappear, for example, after a good night's sleep.

Often, in the first place, the edema appears near the eyes, and that at the same time the muscles weaken, the face gets poured and dead in expression.

Glycosaminoglycans are deposited in various places. If under the skin - swelling occurs. If in the intestines - torments constipation, and when they are deposited in the pericardium, there may be heart failure. If there are too many of them in the central nervous system, the patient becomes drowsy, sleepy, devoid of reflexes, jokes, seems less clever, loses a spark, nay! suffers from depression.”

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AnnaSo profile image
AnnaSo
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39 Replies
Trixie33 profile image
Trixie33

Does he offer a solution? 🙄😊

AnnaSo profile image
AnnaSo in reply to Trixie33

He explains how to diagnose and of course treatment is that of hormones replacement ☺️

Marta285 profile image
Marta285 in reply to AnnaSo

Hi Anna, is it possible to get link to full article/research please? Marta

AnnaSo profile image
AnnaSo in reply to Marta285

Hi Marta, sure, it’s in Polish, however

wyborcza.pl/TylkoZdrowie/1,...

Marymary7 profile image
Marymary7

Interesting, I have terrible puffy under eyes 😧 Thanks. We must all keep researching I suppose!

Cheers 😀

AnnaSo profile image
AnnaSo in reply to Marymary7

No worries, glad others found it interesting ☺️

shaws profile image
shawsAdministrator

Unexplained 'swelling' was always used to diagnose hypothyroid patients - before blood tests and levothyroxine were inroduced which overtook the knowledge that doctors used to have in diagnosing by Clinical Symptoms alone.

stopthethyroidmadness.com/h...

The following is by one of TUK's Advisers:-

thyroiduk.org.uk/tuk/confer...

FancyPants54 profile image
FancyPants54 in reply to shaws

Now all they do is look at us and tell us how important it is for us to loose weight! Whilst denying us T3 or NDT or even adequate T4 to stop us being hypothyroid.

Hypogirl60 profile image
Hypogirl60

This endocrinologist really has hit the nail on the head. What’s their name so we can look the person up see if there are any other papers/advice written.

AnnaSo profile image
AnnaSo in reply to Hypogirl60

Hey hipogirl!

His name is dr Wieslaw Grzesiuk, all is in Polish I’m afraid...

JaxR profile image
JaxR

This is spot on. I have bad problems with swelling and water retention and nothing seems to work. Never seen it explained more clearly. Thank you!

AnnaSo profile image
AnnaSo in reply to JaxR

No worries ☺️

FancyPants54 profile image
FancyPants54 in reply to JaxR

It's a huge problem for me too. Literally huge! I can lay down on the bed and slap my stomach and it sloshes like waves on a pond.

AnnaSo profile image
AnnaSo in reply to FancyPants54

Sorry to hear you also suffer FancyPants! For me it’s a bit different, I’m not wobbly, if anything my limbs, belly and bum are very firm, hard, like there is too much stuff in the tissues and they are at full capacity. It hurts to touch those areas too... my skin is purple ish colour and bleaches when pressed. Do you also have such experience?

FancyPants54 profile image
FancyPants54 in reply to AnnaSo

The skin on my arms feels like that. It's stiff and hard and swollen. I can't pinch it, I just can't get hold of any, although it's not discoloured, it's sore if I try to do the pinch test and the colour of my arms never go brown in the sun anymore, just speckled, it's odd.

I feel as if my insides are sloshing around, but my arms are definitely stiff with fluid under the skin.

AnnaSo profile image
AnnaSo in reply to FancyPants54

Thanks FancyPants, I wish I was more sloshy ☺️ this whole stiffness is really uncomfortable....

FancyPants54 profile image
FancyPants54 in reply to AnnaSo

Sloshy isn't comfortable either. Very heavy feeling and my belly droops with it. Hideous condition.

MariLiz profile image
MariLiz in reply to FancyPants54

Mine too!

helvella profile image
helvellaAdministratorThyroid UK

Also called: mucopolysaccharides

Often generally referred to as mucin, or mucinous deposits. Excess causes the classic non-pitting oedema of hypothyroidism.

greygoose profile image
greygoose in reply to helvella

Exactly what I was thinking! :)

LAHs profile image
LAHs in reply to greygoose

Me too. But it's a step forward to learn that glycosaminoglycans accumulate in tissues and prevent evaporation of water. While we knew about mucin we had no idea how it was formed. Now maybe we can research what to do to prevent it.

AnnaSo profile image
AnnaSo in reply to LAHs

For me personally it was a first to hear that hypo weight gain is predominantly water. That is probably why we hear about weight ‘melting off’ those who hit the sweet spot with meds. Water gets flushed much quicker than fat would get burnt. I personally remember that when I got diagnosed crack in 2007 I lost 10kg in the first month of treatment, doubt I burnt 10kg of fat in such short time ☺️

LAHs profile image
LAHs in reply to AnnaSo

That's a good observation. Yes, we can flush out water faster than burn off fat, hey, we are closing in on this problem.

AnnaSo profile image
AnnaSo in reply to LAHs

Yay ☺️

Naomi8 profile image
Naomi8 in reply to helvella

Just had my bloods back from medichecks,looking good,so why,after a year on NDT,am I still so heavy & blubbery?ie why am I retaining so much fluid.Why aren't my energy levels up more?

helvella profile image
helvellaAdministratorThyroid UK in reply to Naomi8

It would probably be best to start a brand new post with those Medichecks results.

Do include the reference ranges!

Down here on an older thread, any discussion is likely to be missed by many.

Naomi8 profile image
Naomi8 in reply to helvella

will do!

Cooper27 profile image
Cooper27

Interesting. They do say thyroid sufferers don't sweat very much, so I could see that making sense.

Shaza-1970 profile image
Shaza-1970 in reply to Cooper27

Flip I wish that was the case with me. I sweat no matter what I do. It’s totally embarrassing. The amount I do sweat I should be like twiggy.

Cooper27 profile image
Cooper27 in reply to Shaza-1970

That sucks. If you're going to get symptoms, you'd at least hope for a helpful one! We're all different though

AnnaSo profile image
AnnaSo in reply to Cooper27

I certainly fall into that box, can barely break a sweat...

Cooper27 profile image
Cooper27 in reply to AnnaSo

Yeah, I don't think I sweat as much as a normal person. I look really lazy in the gym because I've barely broken a sweat...

FancyPants54 profile image
FancyPants54 in reply to Cooper27

That's not the case here! The slightest effort and I'm dripping wet. I'm currently dripping wet because I just picked a few damsons off my tree. Slightly warm temperatures and I'm sweating all over. I'm never cold, always too hot and sweaty.

Cooper27 profile image
Cooper27 in reply to FancyPants54

I guess everyone's different, it'd be lovely if it being hypo at least meant changing clothes less :D

Here, we usually cal it mucin - but it is basically the same thing - the stuff that gives myxoedema its name.

LAHs profile image
LAHs

Thanks AnnaSo, that takes us a step further to understanding the cause of weight gain. I asked my current (good) endocrinologist why we gained weight and how we could prevent it - and guess what he said? I bet you know. He said, "I have no idea!" And that's from a good guy.

AnnaSo profile image
AnnaSo in reply to LAHs

Hi LAHs, I’m so glad others also found it useful! ☺️ I’m totally with you, even though we know know hypo often mean weigh gain I’ve never heard/read why actually gain it. Yes slow metabolism for sure but what does that mean. Now I feel much more enlightening, and to be fair a bit at ease too. We didn’t ‘eat’ that wait and telling us to next time I hear a doctor say ‘go on a diet... we’ll go educate yourself first mate then we talk ☺️

zerendipity profile image
zerendipity

Very interesting topic! Thank you for sharing.

I found some research:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

Too bad it’s only about skin, it’d be interesting to know about the GAGs effect on brain and other organs.

Edited to add: pnas.org/content/99/22/14362

That is concerning.

AnnaSo profile image
AnnaSo in reply to zerendipity

Hi Zerendipity,

I’ve just read all the links. All makes sense, doesn’t it. Now I was glad to see that T3 can help in correcting the levels!

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