Just discovered ’hypothyroid mucin’ is a thing! Mind blown 🤯
This explains my solid tops of arms, super sore lower legs cankles despite being fairly slim. Under boob rock-solid bulge. Non pitted from what I can tell.
I’m now on 75mcg Levo and AI diet, fab 4 vits all underway and heading in the right direction, a little has shifted over the last 7 weeks…. Will it continue to shift? Is there anything I can do to speed this up? take ? rub on? that will help.
All ideas gratefully received, I’ll share any info I find. 🦋💚🦋
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Regenallotment
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I think the two most important things for it to resolve are the right dose of thyroid hormone and lots of time. It will have taken a good length of time for that mucin to build up, and it will take a good length of time for it to dissipate. Which also won't start to happen at least until you've been on an appropriate stable dose of thyroid hormone for enough time to get the ball rolling.
Hi Regenallotment. When I was severely hypothyroid before diagnosis (TSH 161, no T4) I had mucin swelling on my legs (along with every conceivable classic symptom). I recognised it as different from pitting oedema that I'd suffered with an earlier illness. This was a weird sort of textured swelling, like sugary dregs at the bottom of a teacup. You could nearly mold it with your fingers. It did eventually resolve miraculously, no secret, just taking levo and being patient. I also had puffy face and eyes, I looked a mess and was glad of compulsory face masks at work to hide the damage. It eventually resolved too, along with the little solid pot belly. Only getting levo at the right level and giving it time is what seemed to work.
thanks so much for taking the time to share your experiences. This is very reassuring. So pleased to hear your symptoms are improved. There is hope! Testing and depending on results possible evidence for another 25mcg increase. We shall see. 🦋💚🦋
Re dosage. At the start of my journey I was advised to work up to 100mcg as I was so ill. The Dr said she'd taken specialist advice and I was to do that regardless. She then left the Practice and another GP cut it back when I got to 100, saying I was overmedicated. I tried to tell him the initial advice but he wouldn't listen, even though I said I felt fine. He said 75mcg was plenty and test again in three months (?). That was two months ago. I tried to stick with it in case he knew better but two weeks ago I started with symptoms. I get horrendous back pains when undermedicated, and the scales jumped up for no obvious reason and I became very constipated and tired. Needless to say I've upped my dose a little to see if it helps, (early days) so if you're confident to do so it may be an idea for you to increase your dose too. It's exhausting trying to manage the condition as you feel it needs constant vigilance and a firm resolve. Good luck.
Since stopping Levo and starting Armour 4 months ago, the mucin buildup in my face has improved dramatically - the before and after photos that I took to remind myself that this wasn't all "in my head", as my doctors would often insinuate - are very poignant indeed. My eyes especially look much more normal (and I was strongly considering having eyelid reduction surgery - who knew all I needed was to be properly medicated?), while my 'double chin' (which I now know wasn't likely to have been fat) has more than halved in size. I still have quite a bit to go on my tummy and back/bra bulge, but even those have started to shift, too. I can only hope it continues, but like others have said, the only thing that seems to have made the difference has been making sure that I'm properly medicated and trying my best to be patient. x
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