Mucin : I think I have this. I read about it here... - Thyroid UK

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Mucin

Pastelart profile image
37 Replies

I think I have this. I read about it here this morning, but can’t find anything about it on the internet. What causes it and can you get rid of it?

I’m really struggling to lose any weight and am feeling depressed and self conscious about it. I lost my husband 3 months ago and would have thought that the weight would drop off, but I’ve actually put more on.

I’m on 125 micrograms of levothyroxine

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Pastelart profile image
Pastelart
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37 Replies
helvella profile image
helvellaAdministratorThyroid UK

The main cause is hypothyroidism.

However it is not discussed very much. I imagine because a lot of people, once adequately treated, find it slowly disappears (or at least substantially reduced.)

The word Myxoedema (which is often used to mean hypothyroidism, most often severe hypothyroidism) comes from "slimy substance swelling".

(Pretibial myxoedema also occurs in Graves disease.)

There is quite a bit of information available - have a search for: mucin hypothyroid.

Pastelart profile image
Pastelart in reply to helvella

Thank you hevella

Pastelart profile image
Pastelart in reply to helvella

helvella 🤪

shaws profile image
shawsAdministrator

First of all, my condolences upon the loss of your husband and that alone will take some time just to come to terms of it. Be kind to yourself and weight will eventually resolve probably as your dose is slowly increased (if necessary).

This is a link about Mucins and may not be what you referred to:-

frontiersin.org/articles/10...

Other members will also respond when they read your post and it is a big learning curve for us when we have a dysfunctional thyroid gland.

Pastelart profile image
Pastelart in reply to shaws

Thank you shaws, for your condolences and for the link, which I found a tad difficult to understand. So could this account for the weight gain?

shaws profile image
shawsAdministrator in reply to Pastelart

Lots of people complain of 'unexplained' weight gain and it usually due to us being hypo(low)thyroid and metabolism has lowered. Also we haven't reached a maximum dose of thyroid hormone replacements (i.e. levo or other replacements).

stopthethyroidmadness.com/h...

Quite a number of people complain of weight they've gained.

People who hypERthyroid usually have the 'opposite' i.e. lose weight without dieting.

SlowDragon profile image
SlowDragonAdministrator

Very sorry for your loss Pastelart

Stress and grief will upset/increase cortisol levels

Thyroid and adrenals are closely interlinked

Suggest you retest your thyroid and vitamin levels in a few months time

Meanwhile be gentle on yourself and try to relax

Pastelart profile image
Pastelart in reply to SlowDragon

Thank you SlowDragon

DippyDame profile image
DippyDame

Very sorry for your loss, that's enough to cope with without also being unwell.Take care of myself.

Hypothyroidism causes the mucin layer under the skin to absorb water and that causes the puffy swollen appearance.

I was very wrongly medicated a few years ago....and I puffed up!

The pinch test showed that the problem lay in the mucin

If you take a good pinch of skin on, say, your arm ,your thumb and fore fingers will come close together if the cause is fatty tissue because this tissue will move when pinched.

If the problem is waterlogged mucin, this won't happen and, you will have a "lump" of flesh within the pinch point because the mucin doesn't push aside when pinched.

This is clear in old photographs, I looked really bloated...it wasn't fat as I then thought!!

I was looking at my elder son's graduation photograph the other day and in the family group this is so obvious...we all thought I was very overweight. I hated that!!

Once I was correctly diagnosed the " bloat" reduced as the water level reduced!

If the weight gain is thyroid related then dieting will not solve the problem....Been there!

Someone said to me at the time, " Goodness, you've got your cheekbones back"!!

Do you have any test results that members can help analyse?

Many of us have private tests which give more info than the NHS

Suggest you have a full thyroid test...

TSH, FT4, FT3, vit D, vit B12, folate ferritin and thyroid antibodies

thyroiduk.org/help-and-supp...

The fact that you are now doing something positive to change things for the better will help a little.

We're all here to help one another so come back and post as often as you like....even if you just feel like having a chat and need some support on a bad day.

You will feel better once you are correctly medicated.

Good luck.

Pastelart profile image
Pastelart in reply to DippyDame

I don’t know why I’ve taken so long to get back to this forum, you are all fantastic.Thank you.

I haven’t had a thyroid test for months, will order one from Monitor my health and stop taking my B-complex supplement.

SlowDragon profile image
SlowDragonAdministrator in reply to Pastelart

Just stop vitamin b complex 5-7 days before test

Only do private testing early Monday or Tuesday morning

Don’t test in a heatwave

With such low B12 you likely need separate B12 as well as daily vitamin B complex

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once/if your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been

healthunlocked.com/thyroidu...

DippyDame profile image
DippyDame in reply to Pastelart

Good decision!

Post the results and members will comment!

humanbean profile image
humanbean

I’m really struggling to lose any weight and am feeling depressed and self conscious about it. I lost my husband 3 months ago and would have thought that the weight would drop off, but I’ve actually put more on.

My condolences on the loss of your husband.

I don't know for sure, but I think grief might lower OR raise cortisol at different stages of grieving.

If cortisol is not at the right level for you then it can make people put weight on. Cortisol levels have an impact on the thyroid too, which could also increase your chances of putting on weight.

Where mucin comes into this process I don't know. But when cortisol and thyroid hormones are affected it seems to make an appearance for a lot of people.

If your nutrient levels have been affected you might have dropped your levels of iron/ferritin (or changed the proportions of them) and that can affect weight gain and loss :

healthunlocked.com/thyroidu...

Grief itself will affect stress levels and the adrenals :

huffpost.com/entry/grieving...

drlamcoaching.com/blog/effe...

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

Pastelart profile image
Pastelart in reply to humanbean

Thank you humanbean, as I’ve mentioned before, my ferritin had dropped right down again a year after my iron infusion. The doctor told me that they were not going to do anything about it, so I asked if I should take iron supplements. You could have knocked me down with a feather when she replied with ‘if you want ‘ I’m taking 305mg ferrous fumarate and decided to add vitamin 12 as my test result was 174, which the doctor said was good!!!

As always, I really appreciate the support that I get from you all.

humanbean profile image
humanbean in reply to Pastelart

I wouldn't take the 305mg iron that you are taking because your body won't be able to absorb that much all at once, and it will just irritate your gut. A lower dose might actually be better. A couple of posts you might find of interest :

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

I took ferrous fumarate 210mg to raise my iron and it took nearly two years, but if I had my time over again I would try experimenting with ferrous gluconate instead.

Pastelart profile image
Pastelart

I’ll ask the doctor for a new script, thanks.I said that my b12 was 174, which wasn’t correct!

Here with my results

Text
SlowDragon profile image
SlowDragonAdministrator in reply to Pastelart

B12 still far too low at 294

Low ferritin

Are you vegetarian or vegan

From post 4 months ago

My ferritin went down to 7 with anaemia in August 2020 and I was given an iron infusion in October, which is why it was so high in November. Ever since then it’s been dropping. By November 2021 it was down to 34 and now 19.

Ferritin needs to be at least around 70 for levothyroxine to work well

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week, plus red meat daily, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked

preventmiscarriage.com/iron...

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Medichecks iron panel test

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Good explanations of iron and private iron infusion

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Iron/ferritin and restless legs

healthunlocked.com/thyroidu...

humanbean profile image
humanbean

Just a heads up - the stuff you are looking for info on is mucin, not muchin. ;)

SeasideSusie profile image
SeasideSusieRemembering

Pastelart

Just letting you know that I have corrected the spelling of mucin in your thread title. If you were searching for the spelling "muchin" that may explain why you didn't anything :)

Pastelart profile image
Pastelart in reply to SeasideSusie

👍

Lulu2red profile image
Lulu2red

My condolences on your loss. Grief is stress and it can raise Cortisol levels which makes the body hold onto water. I had a lot of mucin especially in my legs and feet and my under arms and face but my personal belief is that it was severe hypothyroidism. I know quite a few people who are hypothyroid and never had the problem. I think it has to do with low Free T3 levels. Of course GP's are not allowed to test for it. I would pay for a private test and stick it under his/her nose. My Free T3 was stuck at 1.2 and I had Mucin. It has all but disappeared now my Free T3 is 6.2. I have lost the water weight/Mucin. I have been with my partner for 16 years and I met him severely hypothyroid. He cannot get over how skinny my legs are now! But actual fat loss is still a struggle. If you have a problem converting T4 like I do, faulty DI02 gene, huge doses of T4 won't help either, it makes it worse and you just get reverse T3. I would sort your vitamins, but find out where you FreeT3 is at now. Getting an NHS prescription for T3 will be a struggle but I got mine that way. I am currently on 50 mcg T3. I lost my mother in January so I can empathize. I use CBD oil or capsules. I find it helps with stress and the arthritis pain in my hands. If you test your thyroid and put the results up here you will at least know if they are right or wrong. GPs and Endocrinologists are unreliable and want us all in the same box like robots. We are all individuals so it's your symptoms that are the best indicator of your health. One other point is your iron levels. What the GP thinks is within range and adequate might not be the case for you. In my experience low iron and low thyroid go hand in hand. One cannot work without the other, it's like the 'goldilocks' vitamin. If you can eat liver once a week you will do yourself a favor and your thyroid. Better than pills. Be careful dieting. I tried the 5:2 diet and it made me really sick. Just cut out all Gluten that won't hurt you, avoid Soy, cook from scratch. Avoid anything processed or labelled diet. If you have the energy and time to go for long walks that will help with the weight I am sure. Borrow a dog or rescue one, better than any burglar alarm and helps with depression and you'll never be lonely. Don't get fobbed off by the GP blaming your health all on grief. Hypothyroidism makes you depressed. I took 25mg of T3 at the beginning and within 3 days my brain fog had gone! All the best.

Pastelart profile image
Pastelart in reply to Lulu2red

Oh Lulu2red, thank you for sharing your story with me. I can stomach chicken liver pate, so will get busy. I’ve always cooked from scratch and eat very healthily, I have an allotment and am always on the go. Funnily enough, I came to walk my daughter’s dog, but got sidetracked by a baby goldfinch that I rescued from the cat. I’ve rigged up a plastic crate and have hung it in a tree near the Niger seed feeder. I’m going to order a blood test from Thriva. -full iron panel and thyroid function tests.

SlowDragon profile image
SlowDragonAdministrator in reply to Pastelart

When testing ferritin levels…stop iron supplements a week before test

Do test fasting early Monday or Tuesday morning and don’t eat iron rich dinner night before test

Pastelart profile image
Pastelart in reply to SlowDragon

I was wondering about the iron supplements, thanks SlowDragon. I’m going to have to wait till week after next to do the tests.

HowNowWhatNow profile image
HowNowWhatNow in reply to Pastelart

Not sure whether you’ve explained it elsewhere but do you know why your ferritin levels are dropping?

Do you have eg. heavy periods?

And if so, have your doctors thought of any options to work around that eg. Transexamic acid / contraceptive implants.

I am asking because I have a lot of experience of that situation. And could offer some advice.

Lulu2607 profile image
Lulu2607

Hi. I am sorry to hear about your sad loss. I just wanted to say that I had mucin when severely hypothyroid, before being diagnosed. I knew it was a different kind of swelling to fluid retention type of swelling which I have had before. I got it in the legs and it was a weird swelling that felt like a squidgy swelling that you could manipulate, but it gradually resolved after starting levo.

Pastelart profile image
Pastelart in reply to Lulu2607

Hi Lulu2607, I don’t know whether I have mucin, but as my fat is quite solid and not squidgy, I wondered. My worst bit is my abdomen, though I’m bigger than normal all over, ugh!I’m glad that yours has resolved. I’ll see from my next test whether I need to up my levothyroxine dose. Here’s hoping that I can sort myself out soon.

Rocky profile image
Rocky

I too am very sorry for your loss. I have found that since being put on T3 last August, and prescribed ferrous fumarate twice a day for low iron, that I have lost weight. I don't look swollen anymore, and have realised that it has been exactly what you are all describing about the mucin. Just like Dippy Dame has said about someone saying she has got her cheekbones back. That is how I am and I can actually see my cheekbones for the first time in 13 years, and my face looks so different. It isn't as puffy anymore, and I can also see my neck swelling straight away, which is still happening, until I am on T3 altogether.

Pastelart profile image
Pastelart in reply to Rocky

Thank you Rocky, I’m glad that you’ve managed to beat the dreaded weight problem. I will have to wait and see when I get my test results, though knowing my luck, I’ll have a battle with progressing the treatment regime.

Rocky profile image
Rocky in reply to Pastelart

Just take one step at a time and try not to worry too much and everyone on here is always there to help us with the next step

Pastelart profile image
Pastelart in reply to Rocky

You are all great 😊👌

HowNowWhatNow profile image
HowNowWhatNow in reply to Rocky

I came here today to ask about weight loss and T3 - which is happening for me. And then I saw your comment.

I don’t weigh very much so am a bit concerned by it. Am glad it’s working for you.

How much T3 are you taking? And how long should you take it before getting your levels checked again, do you know?

Rocky profile image
Rocky in reply to HowNowWhatNow

I follow the advice of my NHS Endocrinologist and I am currently taking 75mcg of Levothyroxine and 25mcg of T3. I have had my Levothyroxine reduced by 25mcg each time. My private Endocrinologist asked for me to have a blood test after 6 weeks when I first started my T3. I have also just been diagnosed with celiac disease just before Christmas, which has been a shock for me, so they are making sure I am absorbing my T3 and if I need more of it because of my DIO2 conversion issues too. I started out on 150 mcg of Levothyroxine, and my private Endocrinologist dropped it to 125mcg and put me on 15mcg of T3, which I take every 8 hours, 3 times a day. After my first blood test, I was dropped to 100mcg of Levothyroxine and stayed on 15mcg of T3. I still feel unwell on my Levothyroxine, so I am going onto T3 completely. I have now been put on 75mcg of Levothyroxine and 25mcg of T3. I hope that all makes sense

HowNowWhatNow profile image
HowNowWhatNow in reply to Rocky

That is super helpful, Rocky.

Thank you very much.

Rocky profile image
Rocky in reply to HowNowWhatNow

That's ok and glad I could help

Pastelart profile image
Pastelart

Good that you have a thyroid educated endocrinologist.

Rocky profile image
Rocky in reply to Pastelart

I know and have been very lucky

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