Hunger may increase in patients on T4 and faili... - Thyroid UK

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Hunger may increase in patients on T4 and failing to lose weight

diogenes profile image
diogenesRemembering
94 Replies

This paper attempts to link unexplained weight retention with patients on T4 therapy with an effect on increased hunger.

Effects of levothyroxine substitution therapy on hunger and food intake in individuals with hypothyroidism

Bjarke R Medici , Birte Nygaard, Jeppe L la Cour, Martin Krakauer, Andreas Brønden , Mette P Sonne , Jens J Holst , Jens F Rehfeld , Tina Vilsbøll , Jens Faber, Filip K Knop

Endocrine Connections 2023/vol12

DOI: doi.org/10.1530/EC-23-0314

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diogenes profile image
diogenes
Remembering
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94 Replies
greygoose profile image
greygoose

Maybe I blinked and missed it, but I can't see anywhere where they talk about water retention, only about the hypos eating more. Smacks of patient-blaming again, to me.

janeroar profile image
janeroar in reply togreygoose

Water retention is my biggest issue. Literally my skin is taunt with fluid when I pinch it. I’m not sure whether it was you greygoose who said this is one of the signs of hypothyroidism that’s often missed? I think you called in Mucin?

Water retention - at a guess - is a different metabolic process to fat retention. I would love to hear about others experience of this and ways round it if they have found.

This paper makes me think again about how doctors are still trying to draw linear lines from one thing to another. The whole body and patient needs to be taken into account. That takes much more detailed knowledge of whole body systems as well as environmental factor such as stress and diet that unfortunately doctors aren’t being trained to have.

greygoose profile image
greygoose in reply tojaneroar

I often do talk about water-retention and mucin, so maybe it was me. It's my biggest problem, too. On occassions when the water has drained off, I'm so skinny! lol Yet most of my life I've been called fat due to the water-retention.

At the moment, I'm experimenting with sarsaparilla root, and having a little success, which is exciting. :)

Totally agree with you about this paper.

janeroar profile image
janeroar in reply togreygoose

I wonder why the body might be holding on to fluid? Are we drinking enough? Do our bodies needs more fluid to dilute what would be toxic levels of substances generated by a poorly functioning endocrine system?

I’m often thirsty even though drink a lot of fluids, hence having to get up up to pee in the night! 😊

I’m going to experiment with upping water intake next week or two and see what happens.

How are you taking sarsaparilla?

greygoose profile image
greygoose in reply tojaneroar

I'm not convinced it has anything to do with water in-take. I've never noticed a difference when I drink a lot and when I don't. One could even be tempted to think that it's due to drinking too much water. Then again, maybe too much salt - or too little salt. I've tried it all without making any difference.

I'm taking sarsaparilla capsules.

janeroar profile image
janeroar in reply togreygoose

I don’t eat huge amounts of salt but noticed I do have a bit less fluid retention when I cut it right down. Though eggs are never as good without it!!

There’s some evidence that low potassium levels lead to fluid retention. Have you ever had your levels checked?

greygoose profile image
greygoose in reply tojaneroar

Frequently! lol although not for a long time, admittedly. But the water-retention is an on-going problem since I as about 8. And, I do take potassium occassionally because I take B vits, and B12 lowers potassium.

Sodium and potassium are two of the tests that doctors do automatically, no matter what the problem, and then ignore the results!

janeroar profile image
janeroar in reply togreygoose

That’s so interesting. Thanks Greygoose. A font of fascinating knowledge as ever!!

greygoose profile image
greygoose in reply tojaneroar

You're welcome. :)

metamorphica profile image
metamorphica in reply togreygoose

can attest to that. i have shown as below range in potassium in two recent tests yet they never mentioned it. As im on b12 injections, now it makes perfect sense i am low....

greygoose profile image
greygoose in reply tojaneroar

Of course, there is the other theory, that the body needs salt, but when the water goes, the salt goes with it. So, the body holds on to water. However, could very well be that like so many things, we're all different, and there is no modus operandi that fits everyone.

Regenallotment profile image
RegenallotmentAmbassador in reply togreygoose

I could be considered to eat a lot (more than the nutritional guidance) of sea salt (intentionally) and daily cream of tartar. Had both sodium and Potassium measured by GP and low in range.

I ama sweater though 🥵

greygoose profile image
greygoose in reply toRegenallotment

Ah, yes, you do lose a lot of salt that way.

Regenallotment profile image
RegenallotmentAmbassador in reply togreygoose

How do you take the sasparilla root?

Alisbabas profile image
Alisbabas in reply togreygoose

Hi, which sarsaparilla root do you use?

greygoose profile image
greygoose in reply toAlisbabas

Is there more than one?

Alisbabas profile image
Alisbabas in reply togreygoose

I mean tea or tablets what brand?

greygoose profile image
greygoose in reply toAlisbabas

Capsules from Piping Rock. :)

Regenallotment profile image
RegenallotmentAmbassador in reply tojaneroar

When I went over replaced earlier this summer the water poured off me and my muscle definition came back all over, legs and arms, my back. It’s back on again to some extent as I’ve obvs reduced my dose. I continue to try but so far the perfect dose v. Mucin ratio remains elusive. 🌱

janeroar profile image
janeroar in reply toRegenallotment

Yup in same situation

Thank you for this.

Does this hypothesis apply only to those on Levothyroxine only or on combined Levo/T3 therapy or NDT?

The reason I ask is that I wonder whether Levothyroxine is used here as a generic term for thyroid hormone.

Also interesting that women with surgically induced hypothyroidism were excluded

diogenes profile image
diogenesRemembering in reply to

I think probably onT4. I don' t see the paper as criticising the patients in the study. Increased hunger is a subtle affair that the patient may not be aware of, because its effect isn't great but observable. It alters nothing in the debate.

The late Dr. Blanchard said that taking thyroid hormone on an empty stomach (as we are told to do) will cause insulin resistance (which of course increases cravings and hunger). His recommendation was to always take thyroid hormone with food to avoid this. Dr. Myhill also recommends taking it with food.

in reply to

I’ve heard this too although it contradicts everything we’re told about how to take Levothyroxine.

If anyone wants to follow this path there’s no problem. Yes, thyroid levels will be affected but that doesn’t matter. It’s just really important that there’s consistency so that blood tests and results are consistent.

Morbidmoggy profile image
Morbidmoggy in reply to

This would explain why many (sadly not myself) find the keto diet a very effective way to lose weight as its often recommended for diabetics

Regenallotment profile image
RegenallotmentAmbassador in reply toMorbidmoggy

Short term I would agree, long term it caused me mental health problems. Paleo seems to work better for me. 🌱

LindaC profile image
LindaC

There are so many factors involved in weight management - once it has 'gone wrong' - yet medicine, so far, has been stubbornly arrogant that the patient is to blame for that and for many other ailments these doctors seem unable to cope with. Leptin and Ghrelin are, inter alia, huge factors within the hormonal system and, when the individual works it all out for themselves, they are arrogantly told, "Lost weight because you tried". Not quite sure what endos do?

in reply toLindaC

Absolutely correct. I put on 28 pounds whilst on Duloxetine which is the weight gain nightmare of the pharmaceutical world. It even states in the PIL that weight gain is a side effect.

I did not eat any more than usual. In fact I ate much smaller portions as the drug caused multiple gastric ulcers (also in the PIL) and I couldn’t face food.

Fast forward 6 months after discontinuing this horror drug and the weight is still there. I’m heavier now at 72 than I’ve ever been

I too have been researching Leptin and Ghrelin and trying to work out next moves.

arTistapple profile image
arTistapple in reply to

If you work something out I hope you will let us all know.

in reply toarTistapple

I may be gone for some time 😉

LindaC profile image
LindaC in reply to

Yes, my weight problem [8 years of extreme cortisol stress taking me to 2003] was horrific - never been overweight [until I was!] - then T2D, yet I'd tried everything all along to no avail. AND I DID HUGE AMOUNTS OF EXERCISE - it doesn't work! I did a modified Intermittent Fasting = 10.30 am, 2.30 pm + 7.30 pm, which in 2015 worked a treat - 50 lbs in a few months [bearing in mind that my diet had been exemplary prior to this] and HbA1c down from the first high of 71, to 39 in that short time. Re-got Vertigo 2016, GP said 'eat starches re vomiting', which sent the 50 lb loss to a 60 lb gain in 13 months. Again, unable to shift ANY weight.

Early 2021 - at my request US Scan - Non-Alcoholic Fatty Liver Disease - not told by GP, found it online, next day - everything changed = Intermittent Fasting 2.30 + 7.30 pm - weight dropped off + in one year NAFLD was gone. T2D gone with it. GP asked how I'd done it... 'made it up', along with Dr Jason Fung's fasting info [which I'd had for years but plumped for the first one in 2015]. This time it has worked - weight kept off, until...

Cataract surgery 17 Nov 2022 - NO Informed Consent - I was given a steroid and NSAID, both with heavy duty preservatives - ankles effectively burned - my Right ear lobe is huge in comparison to the other + wait for it, WEIGHT GAIN! It took me from 2003 to 2021 to FINALLY conquer the weight issue, only to be thwarted by some shoddy B'tds failing to do their job. I went from 8 st 10-12 to 9 st 8 - OK, so it's not horrific BUT considering I'd struggled for so long WITH NO MEDIC HAVING A DAMNED CLUE, only to be neither asked if a steroid issue OR be told one was being prescribed... I am livid because I'd developed a 'sensitivity' to steroid hand gel for long standing eczema two years prior. OF COURSE, I'd have said had I been, properly, asked and told. Where I'd been having to add a little more food in to stop going so low, I now have to watch everything more that I had when I first started the twice a day fasting. BEWARE, ask about everything every single thing 'they' give you... don't trust them to do the correct thing. Best wishes. xox

in reply toLindaC

That’s a horrifying story Linda and one with which I can identify with. 😥

To make matters worse, I’m battling with horrendous levels of stress which are sending my cortisol into La La land. I have every stress-related symptom in the book. I’ve told GP that as I can’t get away from the stressor there is no point in giving me any anti anxiety meds. OH and are dealing with appalling intimidation and harassment which can only be resolved by legal action and a case in the High Court. Every day is a nightmare which just gets worse and worse. Fortunately we have an excellent solicitor and wonderful neighbours although our family is not near us. I won’t go into any details here. This is a Health Forum not a Legal Helpline.

I feel as though my body and brain are completely shutting down. Neurologist says they are. I’ve just done my BP as requested by GP and it’s 179/98 as usual.

I’m now being weaned off Gabapentin which I’ve only been on fo a month. No more drugs except beta blocker which will sort BP, anxiety and migraine.

My greatest fear is T2D or a stroke.

LindaC profile image
LindaC in reply to

Oh goodness, I know that all too well, not being able to get away from the stressor(s). Please look after yourself because, at the end of the day, YOU must care for yourself. I'm so sad and sorry to hear this. Once health becomes affected... I've never taken any of their 'stuff', just dealt with it. You need to do the best you can for you. xox

Yes, my 8 years of stress was surrounding legal issues - Self E within a Mental Health Charity, Local A decided to remove meagre funding [wanted to get rid of its Director, who wouldn't put up with...] they THEN, took the unlawful decision [it's in writing] to close it down. I kept bringing in ££ to the deliberate cash-starved charity... they went after me more than anyone. Going to law against those publicly funded - able to use the public purse to defend themselves, incl. QC's [now KC's] is pretty much a hiding to nothing.

There were some minor 'wins' but... some charity members [the Membership owned the Charity - it's housing projects, a large building + a property on a peppercorn rent] with some, being without appropriate services, even committed suicide. The knock-on effect was that my own work became non-existent... word went around and I was persona non gratis everywhere. Oh, I do know, just do the best you can to look after yourself... would I have done things differently? Probably not. Abuse of power is disgusting - calling it out is all that can be done. But not doing that is also fine, when the end result is life changing. 👽🤖

LindaC profile image
LindaC in reply to

You can treat T2D yourself. Yes, stroke is of concern to me also. Do Take Care xox

greygoose profile image
greygoose in reply toLindaC

When I had my last Hashi's swing at the age of 50 - before diagnosis - I lost an awful lot of weight, and the doctor said 'there, you see what a little self-control can do!' She's very lucky to still have a nose, because I nearly punched her on it!

Fruitandnutcase profile image
Fruitandnutcase in reply togreygoose

What a nerve! That is absolutely appalling- so rude.

greygoose profile image
greygoose in reply toFruitandnutcase

Doctors are rude! They seem to think that just because they have a medical degree it gives them the right to say whatever they please. And we, the humble patients, just have to take it.

LindaC profile image
LindaC in reply togreygoose

Sadly, the basic science subjects which took them down that road seem today to be woefully inadequate for the complexities involved [albeit hypothyroidism has such a long and rich history!!] and the nature of the 'intellect-balance' between them and us! ;-)

in reply togreygoose

They ought to be locked up 😡

greygoose profile image
greygoose in reply to

Ah Karma will catch up with her, one day.

in reply togreygoose

Sure will.

LindaC profile image
LindaC in reply togreygoose

Yes, these half-witted freaks simply have no idea - perfectly get how you felt/feel. First time with my 2015 weight loss, filth of an endo said, "She lost weight by trying"! In response to several issues within his letter, I included that he was 'trying'. ;-)

DippyDame profile image
DippyDame in reply toLindaC

I hope he had the wit to distinguish the differing connotations!

LindaC profile image
LindaC in reply toDippyDame

😂 Not quite sure about that, yet they seen so overly sensitive about themselves... boy have I been made to pay for challenging... so be it! :-) Best to you xox

greygoose profile image
greygoose in reply toLindaC

So condescending! I hate that!

LindaC profile image
LindaC in reply togreygoose

Yes, unnecessary and quite sickening - for the last few years, I just tell them, either face to face or in writing... for posterity. ;-) xox

Kowbie profile image
Kowbie in reply togreygoose

Oh you do give me a laugh ( just what I needed)

TSH110 profile image
TSH110

“However, despite levothyroxine-induced enhancement of resting energy expenditure, fat mass loss is rarely seen after levothyroxine substitution therapy. The mechanism behind this conundrum is unknown.”

They also suggest a TSH of any value below 4 is normal, when it isn’t. Below 1….maybe

Surely if you only give one storage hormone to replace that and active T3, how can you expect the same result - there is no conundrum, apples and pears are not the same as apples alone. It’s like pretending abnormal treatment will yield normal results -it clearly does not. It seems plain to me it’s lack of adequate T3 that’s causing it and upsetting the metabolism with knock on effects like problems with weight management and disordered appetite. Known symptoms of thyroid disorder itself .

greygoose profile image
greygoose in reply toTSH110

Very well said!

DippyDame profile image
DippyDame

Our data suggest that levothyroxine-induced hunger may be a culprit in the lack of fat mass loss from levothyroxine therapy.

Good grief....don't they understand that low ( cellular) T3 causes weight gain.

Metabolism slows down and weight increases.

Are they sure those patients on T4 were optimally medicated... rather than after normalization of TSH (<4.0 mU/L),

Perhaps the curse of TSH fixation strikes again!

So blame the patient again... but use fancy words!!

ad libitum food intake in individuals with hypothyroidism.

Maybe they were so fed up with being overweight ( due to undermedication) that they turned to comfort eating

Sorry....not convinced.

"Not enough cellular T3" is becoming my catch phrase!!

It's late and I'm ranting again.

greygoose profile image
greygoose in reply toDippyDame

My thoughts entirely. This paper is rubbish.

in reply toDippyDame

Rant on. I’m not sure whether this paper was posted for discussion or information.

It flies in the face of everything that we know about the effect of exogenous hormones - and there is no indication of why those with surgically induced hypothyroidism were excluded from the study.

The paper asserts that is fluid retention caused by Levothyroxine which causes hunger; this suggests that it is not the Levothyroxine per se

How does that work then?

greygoose profile image
greygoose in reply to

I have a feeling it was intended for information, because diogenes appears to think it's a useful paper.

in reply togreygoose

I don’t think it’s useful. Neither does it promote meaningful discussion.

greygoose profile image
greygoose in reply to

It certainly won't help me because my problem is water-retention, not over-eating!

in reply togreygoose

But this paper says that water retention is caused by Levothyroxine - and you don’t even take Levothyroxine!.

Whichever way you try to rationalise the arguments advanced in this study, you end up down a blind alley.

greygoose profile image
greygoose in reply to

Oh, so I did miss that bit! lol

No, I don't take levo, but I used to. The problem has always been the same, though, before and after taking levo. Even worse on NDT! Slightly better on T3 only, but still there.

So, what was this paper talking about - I only skimmed through it - fat or water-weight? I don't think that's clear. I just kept seeing the word 'fat' everywhere, but maybe that's due to my sensitivities. 🤣

in reply togreygoose

The first sentence of Diogenes introduction states that:

This paper attempts to link unexplained weight retention with patients on T4 therapy with an effect on increased hunger

greygoose profile image
greygoose in reply to

Yes, exactly: WEIGHT retention. But is that weight due to extra fat or water retention? They don't seem to know that with most hypos it's water-weight, not fat. Over-eating doesn't cause water-retention. And, I very much doubt that any hypo over-eats to an extend that explains the massive weight-gain some of them have. It just seems like another exercise in patient-blaming, to me. Whether or not the levo is causing it, I don't know. But very few doctors would take that into account, anyway. You'd still be told to 'eat less and exercise more'!

The more I think about this, the crosser I get!

in reply togreygoose

Exercise more even though your fatigue levels are so high you can’t walk from one side of the room to the other

greygoose profile image
greygoose in reply to

Exactly! And you shouldn't be doing much exercise anyway because it uses up your calories that you need for conversion - especailly if you're eating less!

in reply togreygoose

Since they keep saying that levothyroxine increases hunger and this leads to weight gain, I assume they mean that we eat too many calories...the old "calories in-calories out" theory.

greygoose profile image
greygoose in reply to

Well, that's a load of rubbish, too! That's not how it works. If you look at that low of thermo-dynamics, or whatever it's called, it actually says 'in a closed system'. You can hardly call the body a 'closed system'. So, they've just latched on to that part of the law because it suits them, and are ignoring the rest - just like they do with blood test ranges.

in reply togreygoose

Well, it´s always easier to say it´s the patient´s fault because we are eating too much. Right after I was diagnosed with Hashi´s, the doctor wanted me on VLCD (600 kcal a day). Thank God, I googled and found info that extreme calorie deficit will lower metabolism further, which of course is the last thing you want when you´re hypo...

greygoose profile image
greygoose in reply to

Oh, never ever take nutritional advice from a doctor! They know absolutely nothing about it - even less than they know about thyroid.

But, yes, they always seem to be looking for the easy way out, and to heall with patient wellfare.

DippyDame profile image
DippyDame in reply to

Like greygoose I take T3-only.....

I took levo for over 20 years and ended up an overweight wreck....but that's a long story.

When my T3 level became therapeutic I lost the water...and the weight.

I'd suggest the inference that "water retention is caused by levothyroxine" is flawed....it lacks depth.

I'd suggest this study is wrongly focussing on Levothyroxine when, instead, I'd also suggest it should be extended to study T3!

Effects of levothyroxine substitution therapy on hunger and food intake in individuals with hypothyroidism

Water retention is a symptom of hypothyroidism....it causes weight gain. A simple pinch test can help establish whether weight gain is fat or fluid

Hypothyroidism is the result of insufficient thyroid hormone....more specifically, low T3, the active thyroid hormone.

If they considered Levo to be the problem it was probably because the dose wasn't large enough or the T4 to T3 conversion was impaired....either way the end result would be low cellular T3.

In milder cases that would have shown as low serum T3 or in more severe cases as various signs and symptoms....weight gain being one of them.

Where in the study did they measure FT3?

They did measure TT3 but that doesn't indicate the level of unbound T3/FT3....

Interestingly they measured FT4....not TT4!

Comparing apples with pears!!

They write

Participants were investigated at diagnosis, after normalization of TSH (<4.0 mU/L), and after 6 months of successful treatment.

Without measuring both FT3 and FT4 how confident can they be that the treatment was successful based only on TSH. TSH is not a thyroid hormone and once medication is initiated, not a reliable marker.

Have they considered any other symptoms the participants may be experiencing?

We found a significant increase in fasting hunger sensation after initiation of levothyroxine therapy,

Surely that is because the levo in turn raised FT3 (by conversion), that in turn raised metabolism and the faster one's metabolism is, the more one needs to eat to feel full.....so we feel hungry.

Also, if FT3 remains low, metabolism is slow and weight gain occurs

So we have fluid retention and weight gain both symptoms of low ( cellular) T3

You say, Whichever way you try to rationalise the arguments advanced in this study, you end up down a blind alley.

That is my argument....I don't think it led me down a blind alley!

Ignore ( cellular) FT3 and all manner of ailments and diseases are missed.

greygoose profile image
greygoose in reply toDippyDame

Absolutely true, every word! Why don't they ask patients about all this! After all, we're the experts. We live with the damned thing!

DippyDame profile image
DippyDame in reply togreygoose

Absolutely agree!

SmPea profile image
SmPea

Oddly I lost an awful lot of weight when taking Levo with FT3 low in range. Changed to NDT only and FT3 now high in range and 1 stone heavier and rising! My appetite on Levo was big and still is on NDT. I don’t think I’m a suitable person for any research I’d always put a spanner in the works!

Zephyrbear profile image
Zephyrbear

So we’re still being accused of eating too many pies… in spite of my particular appetite being almost non- existent. That may have to do with the fact I can no longer smell or taste anything due to the nasal polyps I developed about a decade ago, so my food is just a collection of textures rather than taste, but I have yet to lose a single ounce!

Another patient-blaming cop-out if you ask me… 🤬

arTistapple profile image
arTistapple

I laughed out loud when they said “ the evidence of substantial levothyroxine therapy induced weight loss is - at best- ‘scarce’.” I will be keeping that quote for the next time a medic implies it’s my fault!!! My best quote from a GP (that I previously liked and trusted) was “It’s your age, it’s your weight, it’s your posture” all in one sentence. Hat trick.

in reply toarTistapple

I agree entirely. However, in order to disagree with the hypothesis we have to be clear about exactly what is being said.

It’s asserted that weight retention caused by Levothyroxine causes hunger, not Levothyroxine itself.

I’m struggling to understand how weight retention causes hunger. It causes weight gain but not hunger.

Feuerfrei profile image
Feuerfrei

Whilst there are always going to be some exceptions to gaining weight, my mind keeps thinking that if your body realises it isn't getting enough energy into it, then it could cue you to eat more. That's fine when your body is converting your fuel input well as your T3 is doing the job properly. When there's a blockage to that, eating more just means storing more.

greygoose profile image
greygoose in reply toFeuerfrei

I doubt it's as simple as even that.

Feuerfrei profile image
Feuerfrei in reply togreygoose

Nothing ever is haha. However, who knows if this is not an element. There is also research into low mood and what we are more likely to eat. Lets face it, nobody on the hypo journey has ever been told they are depressed and not hypo have they?

greygoose profile image
greygoose in reply toFeuerfrei

I would dispute that research, too! I think they cherry-picked the results to fit the theory. Most depressed people I know got right of their food. I certainly did.

arTistapple profile image
arTistapple in reply toFeuerfrei

That’s definitely been a strong factor in me. In fact I now eat about one third of what I used to eat. Weight stayed steady for about two years after starting levo; even although eating less. Unfortunately weight now creeping up again. I do experience a bit of a ‘craving or hunger’ from time to time but it all balances out over a few days. I just realise eating more has the opposite effect on me. I feel weighed down, bloated and uncomfortable and worst of all - even less energy. So I now know not to look for more energy in food!

However they definitely briefly mentioned water retention and definitely had no idea about that mechanism and that has been discussed in other research papers. Do these guys study other researcher’s papers before they embark on ‘new’ research? Shoddy work.

in reply toarTistapple

They’re usually in competition with each other. Instead of building on existing knowledge, they start again.

greygoose profile image
greygoose in reply toarTistapple

I just realise eating more has the opposite effect on me. I feel weighed down, bloated and uncomfortable and worst of all - even less energy. So I now know not to look for more energy in food!

Oh, me too! I hate feeling full. I just want to go to bed!

DippyDame profile image
DippyDame in reply toarTistapple

Sometimes just trying to show as many published papers as they can.....quantity not quality.

I don't know how some of them get past peer review and accepted for publication.....though I guess some may be published prior to peer review

Lulu2red profile image
Lulu2red

If you have a lot of mucin then in my opinion you are still extremely hypothyroid. I know this is not scientific but I worked with 4 women who were hypothyroid, none had mucin, non were overweight because they were the lucky ones where T4 worked. T4 made things worse for me, although I had zero appetite on it, I got fatter & fatter. On T3 only my appetite returned, I felt my tummy rumble for the first time in 20 years!! My mucin has reduced somewhat but still not on correct dose of T3. However since improving my B12, Folic Acid, Iron status the mucin is less. So getting those vitamins right will make things better and thyroid hormone work better. I have been telling GPs & Endocrinology for 20 years I feel anaemic, they tested everything and told me normal. Just like the thyroid blood test! So anyone reading this who has not optimized their vitamins take matters into your own hands and pay for private bloods every 6 months. It can be a game changer. The mucin in my face has gone since supplementing. I still have big swollen hard lower legs but T3 is not optimal yet. Other symptom of 'air hunger' has resolved. Also I sleep through the night now. Hope this helps someone. I know we are all unique.

DippyDame profile image
DippyDame in reply toLulu2red

Agree....been on a similar journey!

greygoose profile image
greygoose in reply toLulu2red

If you have a lot of mucin then in my opinion you are still extremely hypothyroid.

Doubt if I'm still extremely hypo on 75 mcg T3 a day. And, I supplement everything. Still have much mucin! The only place on my body where you can pinch up the skin is on my forarms. That's the only improvement in water-retention I've seen.

However, I have a theory that a lot of it depends on how long you were left untreated hypo. The longer the mucin has been there, the harder it is to get rid of. Pretty certain I've been hypo since I was 8 years old, and I was 55 when I was finally diagnosed.

Lulu2red profile image
Lulu2red in reply togreygoose

I have been left for 22 years probably more, all I believe is until the mucin subsides there is room for improvement. We are talking at cross purposes I think. You have autoimmune thyroid I have primary severe hypothyroidism left untreated for years. The symptoms are the same. We need a solution but it won't be the same for us all. But I do respect your experience, I hate those wasted years. What I know for a fact is the blood work for people who are clearly hyperthyroid and the GP says they are fine but thyroid patients are kept in a prison box. We should all be treated to the point of hyperthyroidism then be allowed to drop down by our own judgement. We are not idiots. But if we never get close to the prize we will be forever invalids. I have so many friends who are hyperthyroid. Skinny, overeat, don't exercise but the GP says great you look fit off you go. I ask for more thyroid hormone. Oh we can't let you be hyperthyroid. It's all nonsense. Just do you. I've been reading extensively about mucin. What I found out is the longer it's present the harder it is to get rid off because it self perpetuates if that makes sense. But there are medical records of people near death full of mucin who have been resolved. Once mucin gets around your heart and kidneys, liver you've got no chance. Coma is not how a myxoedema patients die, it's multiple organ failure slowly.

greygoose profile image
greygoose in reply toLulu2red

We are talking at cross purposes I think. You have autoimmune thyroid I have primary severe hypothyroidism left untreated for years.

Autoimmune thyroiditis is primary hypothyroidism. It's a problem with the thyroid. Secondary is a problem with the pituitary, and tertiary is a problem with the hypothalamus. So, no, I don't think we're talking at cross-purposes.

We should all be treated to the point of hyperthyroidism then be allowed to drop down by our own judgement.

And that's what I did. I self-treat, I'm not dictated to by some ignorant medic. I was on 225 mcg T3 at one point, and I've come down from there to 75 mcg. But, never once did the mucin disappear.

Lulu2red profile image
Lulu2red in reply togreygoose

Do think that if a healthy person was poisoned with Carbimazole over 7 years they would have autoimmune thyroid or primary or secondary?

greygoose profile image
greygoose in reply toLulu2red

I really couldn't say, without more detail. But, I doubt it would be secondary, because that's a pituitary problem.

JOLLYDOLLY profile image
JOLLYDOLLY

Thank you for the article, but I do find it hard to understand the graphs etc. From my own experience. I do feel hunger sometimes, but I thought that was craving.

I was born without a thyroid gland, so always been on medication since five weeks old. My story is long and so won't bore you with all the details. But I do believe that when you have a thyroid condition, being on the right medication, will make all the difference. One pill certain does not fit all! Medical staff do not and will not understand. They think you are making excuses when you fail to lose weight and accuse you of all sorts. They put the water retention down to being over weight, but although partly true, if it is effected by lack of mobility maybe? A big vicious circle!

In my younger days, I never had any real problems with anything. Managed to keep my weight within range and was able to gain and lose like everyone else. Never really suffered with fluid retention but then it all changed when I hit my 30's! (that was 30 plus years ago) A new GP changed all that, by reducing my medication some what (long story). I had terrible trouble with fluid oedema and later cellulitis for more years, than I care to remember, was even put on a diuretic! My feet were so swollen, they looked like blown up rubber gloves, but it was not pitting oedema, just solid and tight and very red. But I also had fluid leaking too from both legs which ended up with cellulitis.

I didn't get much help only patient shamed, told to portion control etc, the usual stuff. I am ironically back on my original dose of medication and T3 (another battle to stay on it) and although I am not losing weight, I am maintaining. ( I have a lot to lose now, but don't know how much is still fluid) The oedema has reduced a lot but I do carry it in my stomach. My feet are more or less normal again (at least I am wearing normal shoes now, albeit slightly bigger and far better, than the wound shoes I had to wear with extensions!), but they still can swell sometimes and be very painful.

If you managed to read it to the end, thank you. I almost feel relief that it is not just me and that my fears are real.

Thank you 🙂

Lulu2red profile image
Lulu2red in reply toJOLLYDOLLY

Bless your heart. I feel your pain. Keep fighting to keep that T3 and push for more, you definitely need it. If you can afford private Endocrinologist it could change your life. Best wishes 🙏

JOLLYDOLLY profile image
JOLLYDOLLY in reply toLulu2red

Thank you. Yes it was a private Endo that put me on 20 mcg but a NHS Endo decreased to 10 mcg and was going to take me off it, despite the results! I had to report her first though because of her conduct! Sadly I can no longer afford a private Endo.

Lulu2red profile image
Lulu2red in reply toJOLLYDOLLY

So sorry, keep nagging your GP. In the meantime try to find it in Turkey or Greece no need for a prescription. Just a friendly person going on holiday and 🙏

JOLLYDOLLY profile image
JOLLYDOLLY in reply toLulu2red

I have many t shirts on all of the above!🤣🤦🏻‍♀️

Sharoosz profile image
Sharoosz

Rather difficult article but the one thing I took away is that some people may lose a bit of weight on T4 but it's muscle mass, not fat. That slows down our metabolism because we all know lean muscle mass is what burns the calories. Also, being physically weaker than you used to be is also a common symptom of hypothyroidism. (doubtless due to losing muscle mass) (and probably brings on those horrible chicken wing arms!) And not having lost that fat mass, we also know it just attracts more of the same to itself. So why doesn't someone figure out why we are losing muscle mass on this darn drug?

diogenes profile image
diogenesRemembering

A paper showing that ghrelin, the hunger hormone, level isn't normalised until appropriate therapy is given (T4, T4/T3). Perhaps this a signal for proper treatment.

Serum Ghrelin Levels Are Increased in Hypothyroid Patients and Become Normalized by L-Thyroxine Treatment

Signe Gjedde, Esben Thyssen Vestergaard, Lars Christian Gormsen, Anne Lene Dalkjær Riis, Jørgen Rungby, Niels Møller, Jørgen Weeke, Jens Otto Lunde Jørgensen

The Journal of Clinical Endocrinology & Metabolism, Volume 93, Issue 6, 1 June 2008, Pages 2277–2280, doi.org/10.1210/jc.2007-2619

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