Thyroid UK
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Mucin..... yuk 🤮

I had a lightbulb moment yesterday and now I’m feeling quite desperate and panicky.The ‘weight’ I’ve gained since being diagnosed with an under active thyroid is actually mucin.

I have it all over, face , arms, stomach, legs and ankles. Nowhere can I pinch my skin.

I thought it was fat but having done some research it’s mucin.

It’s very unsightly and it makes me feel ‘heavy’

especially my legs.

I am taking 75 Levo and 12.5 T3.

Please can anyone advise me how or what will get rid of it ?

Many thanks in advance to all.

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I am looking forward to reading the responses on your post.I am on NDT & have gone up to over 13st-that's over a stone since switching from T3 only.

Before diagnosis(1998) I was always under 10st.Post diagnosis,weight crept up to around 11st.

Now,post menopause I'm an 18,with no change in diet or excercise.

If anyone can help us,its this forum.

we are not alone & we are in the right place.

This is as distressing as the hair loss I suffered on T3-only

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Hi Naomi8,

I am exactly the same as you. I was always 8-9st , all my life, until about 3 years ago. I’ve gone from a size 8-10 to 14-16 in about 3 years. Like you , no change in diet from before, but admittedly not as much exercise as I used to do, as I just don’t have the energy as I feel exhausted most of the time.

I won’t stand on the scales, as I’m scared to see what it reads., but I know I must be at least 12 stone.

The only upside to it all, is for the first time in my life I actually have breasts !

Breasts aside, I want rid of this unsightly look I am growing into and hope people out there can offer some help.

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Me too 😕

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Do you have any labs to share with us? Could be you're still under-medicated. There's no magic way of getting rid of it that I know - possibly no way at all - apart from being optimal - and even then it might not go. I'm a sufferer, too.

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Hi Greygoose,

Am having new round of bloods on 20th, so will post them then. I’ve only recently started T3 about 6 weeks ago ( now up to 12.5 mcg ) , but have to say don’t feel any improvement, so am hoping to increase it after that.

Last results in May ( before adding T3) were on Levothyroxine 75mcg

TSH 1.59 ( 0.3-4.2)

FT4 21.9 (10-22)

FT3 4.2 ( 3.1-6.8)

Greygoose, please could you tell me if you think these results show I’m under medicated ?

( still on 75 Levothyroxine )

Many thanks x

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They show you were taking too much levo, and had a conversion problem, so your FT3 was too low. So, the answer was to reduce levo and add in T3. Did you reduce your levo?

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Sorry Greygoose,

I made a mistake ( story of my life at the moment)

FT4 21.9 was on 100 Levothyroxine with TSH 0.035.( tested back in January)

I did reduce Levo as advised to 75 which I am currently on.

My TSH on 75 mcg is now, 1.59 ( tested in May)

FT4 18.9

FT3 4.2

Should I increase Levothyroxine or reduce, do you think?

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Should be ok as it is, for the moment. See how it goes when you've raised your FT3 a little.

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Many thanks Greygoose. I will post my new results when I have them for comment on whether to increase anything or not

Your support is much appreciated,

😘

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You're welcome. :)

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Me too. Lumps in too many places.

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:(

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My adivice is don't go on the scales.I have never been over 12st before.Nearly fainted when I saw 13st,though I HAVE had to buy some size 18s, I was still in denial.

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I am in denial too !

Hope someone or something can help us.

Are you on T3 as well as Levothyroxine?

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I was on thyroxine for 16 years,then went on to T3-only for 2 years.I felt physically better but a bit mentally unstable & hair loss was high.My latest bloods show my T3 was over-range on 3grains of NDT,so have reduced to 2grains,slowly.

Now got to decide whether to add some T4,or some T3,as weight still going up.

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Gosh this is me too! 13st from a stable 10 st 9lbs ish for years! All of that has gone on in the last 2 years. Always had slim legs and ankles. Like solid shapeless tree trunks now. Sob!

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Me too ladies.... so sickening 😢

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Wait until you get new tests after 6-8 weeks on 12.5mcg T3

Levo level looks about right. T3 may need slight increase and retest again. But definitely wait until get test results

Are your vitamin levels optimal?

6 months ago vitamin D, folate and B12 all too low

For very large number of us it is going absolutely strictly gluten free that makes biggest difference on mucin.

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SlowDragon hi,

Yes I have been taking all the supplements

advised by the good people on here and these will be tested when I have my blood test on the 20th. I ordered the Medichecks Thyroid/ Ultra Vit.

I am not on a gluten free diet, so maybe this has to be the way forward.

I will post my new results when I have them and once again many thanks for your unending support x

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Never thought of a connection between gluten and mucin. Thanks. irina

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Looks like its back to GF for me.Managed 6 months awhile back...

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I will definitely look into GF. I have had IBS all my life, on and off, maybe this has been my problem! Why am I 60 and only learning about this ? I feel embarrassed I haven’t even considered this and no doctor has ever suggested this to me even after bowel explorations several times 30 years ago!

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If you haven’t started GF and think your IBS might actually be coeliac then ask your GP to test you for that. Once you’ve gone GF you will have to go back to eating gluten for a while before the test. If you just want to eat gluten free then it I suppose it doesn’t really matter if you test first. I didn't and my thyroid antibodies have reduced so much I wouldn’t eat gluten again anyway. Can’t say I’m losing any weight at the moment.I started to eat low carb high fat LCHF a couple of years ago and when I started that I lost a load of weight but my diet has seriously deteriorated of late and like I always say - GF junk food is stll junk food. Might be worth looking into LCHF, check out the Diet Doctor website

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Thanks Fruitand nutcase, I will.

Is it similar to what was the old Atkins diet ? That was very low carb and high protein? I know that was very successful for a couple of my friends who did it at the time.

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Think it’s probably similar although I gather ‘they’ say it’s not the same. Cutting out grain based carbs and things like jacket potatoes and parsnips has always worked for me. Definitely need to get my brain in careful eating gear again ☹️

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Me too! Thanks Fruitandnutcase 🤗

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I agree about'gluten-free' foods. The substitutions are often worse for us than the gluten would have been. Kind of like 'sugar-free' foods. The sugar isn't healthy but possible less harmful than the chemical substitutions. Just my opinion but I gave up ALL artificial sweeteners in any form several years ago and I believe this is one of the things that helped me lose weight and get totally off diabetic medicines including insulin. Have had great in-range HgA1c labs for over 2 years. I had been using the artificial sweetener in the 'pink packet' (no names) for years-even when thin. In 1975 when I went to Russia (then Soviet Union) the guidebooks were full of items to bring as they were scarce or non-existent in the SU then-like tampons, toilet paper etc. I brought a huge box of artificial sweetener- and was possible the most popular person in my group. (Toilet paper was available, of course, but nothing you'd want to use. )

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Do not blame yourself!The medical profession are totally clueless with a few exceptions,when it comes to knowledge,understanding or empathy relating to underactive thyroid & its connection to other conditions & their symptoms.I can hardly believe the things that some GPs & endos have said to patients as reported on here by some very upset,demoralised posters-"you're lazy,you eat too much,you're depressed have some antidepressants..."

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Thanks Naomi8, your comment has really helped. I was in tears this morning talking to my hubby about how ignorant I have been!

I’ve recently said to him that my body and skin on my shins , in particular, is beginning to look like my late mother’s. Thinking about it now, she obviously had the same problem too.

Ignorance is bliss until the lightbulb goes on !

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Why would you or your husband expect you to know all about this? Doctors don't and they spend x number of years in med school. It's not your job to know, it's theirs, and they don't do it.

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My weight just goes up year after year, Im in NDT tried T3 didn’t agree with me, I now have PBC need to use sauna 3 times a week get amalgam filling replaced with white (I have 8 big ones) I have just started strict gluten free and 10 days ago started on 1mg of LDN, I’m keeping my fingers crossed it’s been a battle for me for 10 years, I tried everything else 😢

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Hi , I was reading some of your past posts Joanne and that’s kind of what prompted me to look into my problem. I was going to pm you to see if you had any tips. I looked on the internet and there was a post showing you that you cannot pinch your skin, like I can with my husbands skin, and after being like a stick all my life, since being diagnosed I have put on half my body weight in just about 2 years!

Will start gf after next round of tests, due in a couple of weeks.

Could you please tell me what LDN is and how to get it and which diuretic you use please as I could do with dropping some water 💧! Thanks xxx

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Sorry Joanne, don’t think you’re taking a diuretic! That’s GirlA who kindly responded. Sorry my concentration is poor at the moment! Confusion and brain fog reigns big time since being diagnosed!

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Hi milpool I have a few links I can send you about the things I’ve been researching, I have no real fat on me at all it’s all mucin, I look bulky almost muscley but in the wrong places, my clothes fit awful like my forearms and calves, I hate them!!

Every year I put just 2lb in but it was musin in a new area 😩

I don’t used diabetics as they didn’t work for me but I tried spiralactone, musin is locked in to cells, although I did have some success with strawberry laser lipo!! 🙂

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If you could pm me any links I would be so grateful. Thanks xx

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I’m not brill at that but will try, lol

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I started LDN about 10 days ago I thought I was being smart and started on 2mg and I was totally wiped out did nothing but sleep, I lowered after few days of that to 1mg so I’m a few days I will go up to 1.5, and carry on upping till I feel the benefit. This is my last hope for the mucin my last option was liposuction but have to get a bank loan for that!! 😩

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Is the LDN prescribed for you or can you buy it ?

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Not prescribed my Endo said I don’t know anything about that and I don’t want to!!!! 😡😡😡go on internet

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Thanks xx

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Bunch of idiots.....x

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I have been on LDN for 3 years.I felt best when taking LDN,being GF & on T3-only,til my 2nd melt-down(depression & acute anxiety state)

I started at .5 & took a really long time to get to 4.0

I need to get back to GF & up my protein.I feel like a heap of blubber.That should motivate me.

Annoyingly,when I am depressed(I've had 2 meltdowns one in 2011 & one in 2016)I lose a stone without trying!I thought the elastic had gone on my yoga pants as they kept falling down.Now I can't get into them.

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Naomi8, could you please pm me the link to buy LDN ? Thanks

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I have tried to PM you link who I bought it off milpol

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Thanks Joanne, I got it 😘

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Sorry you’ve been struggling for so long with it GirlA. I’ve only realised this is what I have after looking at a post written by another member on here but my weight has only drastically increased over the last 2 years. That being said it’s ugly and makes me feel very down as I’m learning it’s not fat after all !

I’ve not heard of LDN . Is it prescribed for you? And please can you tell me which diuretic you use as I may have to go down this route.

Thank you xx

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I think you're getting this the wrong way round. It's not losing the weight that gets rid of the mucin, it's getting rid of some of the mucin that makes you lose the weight. And, it's not as long as there's water retention there will be mucin, it's as long as there's excess mucin, there will be water retention. Mucin is a form of mucous that is just under the skin and absorbs and holds water. Everyone has some mucin, it's part of the skin, but hypos have it in excess. :)

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Fab explanation-thanks!

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You're welcome. :)

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Good tip re protein. Thanks. It would be interesting to hear from any "Paleo people" to see if they've noticed less mucin as an unexpected bonus from their Paleo eating.

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My diet follows the Paleo protocol and is gluten- dairy- and refined sugar free. The swelling went down in my face, hands and lower legs legs when I adopted this eating plan. I still have swelling in the upper legs, upper arms and beats though.

I had hoped to reduce the Hashi muscle pain and fatigue through this diet but didn't achieve that by diet alone. I theorized that my cells were still protein-starved. Through this board O learned that many of us have low stomach acid and don't break down protein well. When I added Betaine HCl to my pills of supplements, the pain and fatigue got significantly better. I also take digestive enzymes with every meal.

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Hi YK. I didn't know that low stomach acid also makes protein breakdown harder. I think I'll try the Betaine and enzymes. I'm taking appropriate supplements but still feel really tired. Do you feel comfortable sharing what digestive enzymes you take? And also the Betaine dose? You can PM if you don't want to mention Brands etc. On my way out to the doctor so will watch for your reply later today. Thanks so much. Take care irina

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I've been taking Zenwise Health Advanced Digestive Enzymes, 1 each meal.

I bought NOW Betaine HCl 648mg. I usually take 2 before each meal containing animal protein.

You may need more of less. If you Google low stomach acid, you should find the procedure to determine how much you need. Basically you start with 2 before your heaviest protein meal. If you don't feel a warmth (slight burn), you increase by 1 capsule the next meal. Once you find out how many are too many, you decrease by 1 capsule. (I've never actually gone through this process. I take 2 and am okay as long as I don't skimp on my protein.)

I carry a few doses of each in my purse in case we stop for lunch, etc. when shopping. I get pretty bad stomach pain and bloating without these supplements.

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Thank you. Very clear and precise directiHappy to know it also will probably help bloating too, Take care. irinaons. Am going to order and try.

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Which diuretic are you prescribed?

As I think there are a few different types.

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T3 and gluten free did it for me, but now I can pinch too much! lol! Skin everywhere!😊 I've always been thin except for that horrible mucin, and I lost the whole extra 2st. I had gained. Feels so much better....I would definitely go gluten free, it's not as much hassle as you think it will be, and so worth it. Skin seems to be sorting itself out a bit too🙏. Now for all the other problems.... Good luck guys 🍀 x

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Thanks Mamapea1, that’s great to know and very encouraging. By the way, how much T3 are you on ?

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I'm on T3 only, and following Dr Lowe's protocol, had worked myself up to 100mcg, but I lost this weight long before I got there, which is why I recommend the gluten free, as that definitely played a big part for me👍

Due to various problems with GP and testing (long story) I'm currently taking 75mcg, but still intend to increase. I have complex issues ~ B12, etc. ~ don't we all? 😄 so I continue through the minefield💥but thankfully I seem to have left the mucin behind.

I think we're all different and it's hard to know what will help with each complex issue, but I don't think gluten helps with any autoimmune issues, regardless of testing. Just my opinion. x

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Thanks Mamapea1 most helpful and informative. Good luck with your journey 🤗

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Thank you. You too! 🍀

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Are mucin and water retention the same thing?

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Good question sunset alley . I’d like to know the answer to that one.

Hopefully someone on here can help us .

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Mucin is part of the skin, everyone has it. it's just that hypos have it in excess. It absorbs water and holds it. But, you can have water retention without mucin, I believe.

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Thanks Greygoose for that. Any tips for getting rid of the mucin apart from going gluten free which I will definitely do after next blood tests.

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I've no idea if gluten free would help. It did nothing for me. And, as I said before, I have no idea what you can do. Water pills do help. Five years ago, for reasons I won't go into but not thyroid related, I found myself in hospital being feed duiretics intravenously for a week. It was a nightmare! But, I left the hospital a bag of bones - someone who used to weigh 130 kilos, I peed it all out in a week! I put my clothes on and my trousers fell round my ankles! And, it was great! For a while - about a year, 18 months. Then, the water weight gradually began to creep on again. I haven't gone back to 130 kilos - than god - but I'm no-longer a bag of bones. :'(

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Wow ! Greygoose that’s a story to tell !

Glad you are better though. I might try to see if I can get some water pills!

Am looking at doing the Atkins diet to see if eating more protein less carbs might help.

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Yes, but water retention doesn't 'form' mucin. The mucin is already there.

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Well, most of that is very true. But, it's the mucin causing the water retention. Not the water retention 'forming' the mucin. Mucin absorbs water like a sponge.

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Well, then, obviously I don't understand your use of the word 'formed'. The water is inside the mucin. Or perhaps, I don't understand your use of the word 'mucin', I don't know. But, it doesn't make any sense to me. Do you have a link to where you read it?

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Am I right in thinking that often 'mucin lumps' are misdiagnosed by many doctors as 'lipomas' and told they are harmless, don't need treated, and if we lose weight they will go away as they are just fatty tissue' deposits? There are such things as fatty tissue deposits called lipomas. I have seen them removed in surgery if they grow too big and interfere with movement or cause discomfort. But now I think many of them are actually mucin. Doctors don't know what to do about them so they blow us off and make it seem out fault and all we have to do is eat less!. Just my opinion as usual!

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I really couldn't say. I've never had or heard of 'mucin lumps'. But anything is possible. And doctors are always just as ignorant and rude.

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I had not heard of Mucin until I read your post! I have been mystified by my elephant trunk thighs and upper arms (like SOLID!) and random pockets of what I assumed to be solid fat around my ankle bones, knees and a rather fetching hump at the top of my back. It prompted me to search the threads on here and found this:

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Long threads but worth reading!

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Many thanks Portia1974 for those links. I will read through them. I too have deposits in the same places you mention!

I happened to come across a you tube video of a woman explaining how she can’t ‘pinch ‘ the skin on her arms, but she could pinch her husbands arms. I thought hey !

That’s like me ! Hence the lightbulb moment.... that explains my tree trunk legs and ankles and bumps of ugly fat on ankle bones !

Thank you for the links.

It seems we have to go gluten free as that may help.

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Well you've given me a light bulb moment today so thank you! I cannot pinch an inch and I'd never heard of Mucin! Always learning on here!

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You’re welcome and good luck. Any tips for success please share as it seems there are many of us in this boat !!!!

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The supplement referred to in the link I shared (the one used to address mucin) is NAC. While I hadn't heard of Mucin I had heard of the supplement but in this post:

hypothyroidmom.com/tired-al...

And in relation to mitochondrial function and support.

"N-Acetyl Cysteine – One of the building blocks of our bodies’ master antioxidant Glutathione, but less expensive and more highly absorbed. NAC supports detoxification pathways as well as acting as an antioxidant in the mitochondria. Take 600 -800 mg daily"

And gradually the pieces click into place!

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Yes, today has been quite a revelation!

Thanks , x

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Ahh that’s good to know as I’m having a glutathione injection soon so it might help! It’s also supposed to increase energy and is popular as it has “anti ageing properties”

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Yes I didn't know what that was the other day either...but now I do! Interested to hear how you get on!

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That definitely sounds good, though I have mucin on my face and it definitely fills out the wrinkles. My face is a smooth as a baby’s bum !

Natures natural facial fillers 😂

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Yep, it definitely does! I have what I like to call 'fine features' lol😄, high cheekbones, etc., and I didn't think I had mucin in my face, but I now look like Cruella De Ville!😰.

Oh well, at least I FEEL loads better, even if I do look like a crone ~ getting new make up, but really need mucin injections💉 lol can't win 'em all I suppose. Hopefully I'll fill out in a more healthy way when my appetite improves🙏 x

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Here’s 🙏 for you x

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Wow! That sounds great. I hope it helps, didn't know it was possible. Please let us know how it goes. Good luck 🍀 x

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