Pretibial myexadema

[Joanneconnor]

What specialist do I need to ask for, I have Hashimotos for 1 year no symptoms got pregnant 15 years ago and almost overnight had this skin thickening on both calves and shin bone but also on the anterior of arms and thighs. I need to ask for a biopsy and with the hope to get some treatment. I am aware I am probably the 5% of hashis people with this and don’t think docs will take me serious as I’ve been back numerous times with the pain in calves, they sent me to physio on the last visit 😤😢

Any advice appreciated

Thanks

[RockyPath]

A somewhat recent retrospective study suggests there is a protocol of corticosteroid injections that can be effective over a period of time:

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

Other studies returned from a search suggest the clinician give a shrug of the shoulders and wait for the condition to resolve itself eventually, which apparently it will do, given enough years. ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/162...

[Hidden in reply to RockyPath]

Thank you rocky path. I have swellings on the side of both knee which I have concluded is this prebital mxadema, excuse spelling. Look at some of the photos I would be desperate to have some thing done if it started to look really grim.

[Joanneconnor]

Ohhh thanks I will read these, I have had it 15 years, but I do live in hope I will wake up one day and it will be gone 🙂

[Astridnova]

My pretibial swelling, (which was the first thing that tipped me off to hypothyroidism) disappears overnight with correct dose. I also get knee instability without correct dose. Requires very fine tuning. I am currently taking 2 grains five days a week and 2.25 grains two days a week. More and my pulse goes up and I feel awful, less and I get knee instability even before my legs start swelling from the ankles up. Same for my mother in her 90s. Dad (also in 90s) refused to let me give her NDT on advice of her doctor who gave her T4 which she obviously could not process, but then Dad came to me having just noticed that she had grotesquely swollen legs (they had been swelling up for months). I said that I thought NDT would fix it, and he agreed that I could try it on her. The next day her legs had gone down to their normal slimness. Dad said, "That's unbelievable!" And her legs have remained down since then. I found specialists not useful, but have a good GP who is really keen on NDT and helps patients manage their doses.

[TSH110 in reply to Astridnova]

Well done! &I like the sound of your GP 😊

[TSH110]

I had terrible pretibial myxoedema the itching was indescribable I would scratch them until I bled and still they itched like hell, it normally came on about 7pm. It is much improved now I am on the correct dose of thyroid hormones but I occasionally still get that itching but nowhere near as severely. The other problem I have developed are Bakers cysts in both knees like big swellings at the back where they bend. It is the synovial fluid bulging out. It does actually protect the knee when I had arthritis so I leave them alone. They can come back if operated on. Strangely they were more painful when smaller now they are whoppas I have much less pain and a lot more flexibility. All sorts of skeleto-muscular disorders are more common with hypothyroidism. ☹️ I take NDT I felt very unwell on Levothyroxine the Bakers cysts started when I was on it. The shin swelling itching began before I was diagnosed in the later stages and improved once on NDT. I suspect T3 is involved.

[Joanneconnor in reply to TSH110]

Sounds awful, i have no itching on my odema but it is music filled very aches heavy and I have pains in my knees too,I went on NDT 3 years ago and feel much better it’s just not helped the heaviness, I also have PBC which you can get itching with too.

[TSH110 in reply to Joanneconnor]

Sorry to hear that I can remember the awful heaviness of it. Thank goodness you have not got any itching I am on NDT too. I am trying a little T3 with it and it does seem to have helped. I found over time I needed more NDT and I discovered I have the DIO2 mutation which might explain why I never felt well on levothyroxine no matter what dose I took. I hope you can find a way to reduce the heaviness and swelling. I had better check those links.....

[Joanneconnor in reply to TSH110]

How did you discover about the DI02 mutation, what is it and what does it do?

[TSH110 in reply to Joanneconnor]

My parter bought me a 23&me kit as a Christmas present and it has a raw data section with all the genetic code info they collated. In those days it included the DIO2 snps (it no longer does they removed them ☹️) Genetic lifehacks have Info about disorders and known SNPs so you can look them up in raw data and see if you have a combination that can be problematic. That is how I found out. The mutation seems to cause T4 to be less efficiently converted to T3 (ie. inactive thyroid hormone to active version). A working

Thyroid just makes more T3 to compensate but if your thyroid no longer works and you are given levothyroxine you cannot convert it to get enough T3 for your body to work properly and hypothyroid symptoms persist, no matter what dose of levothyroxine you take you will lack adequate T3.

Hope that makes sense.

I’ll see if I can post some links for you:

ThyroidUK info about DIO2 and how to get tested:

thyroiduk.org.uk/tuk/testin...

SNPs for hypothyroidism found in 23&me raw data :

geneticlifehacks.com/thyroi...

[Joanneconnor]

That sounds amazing, I am taking part in the 2000 genome project and get my results in July, hopefully it. Will come back on that

[Joanneconnor]

I'm finally getting my punch biopsy tomorrow on my calf and hopefully on my arm as I have it almost everywhere in strips. I don't have much confidence in the GP that's doing it as she's the one that told me It was fat 😤 hoping she will send it off and they will do the right dye tests on it. Will post again when results are back