Pritibial Myxedema

[Rosyp]

Hi I'm new on here.

I have an underactive thyroid and been managing it with medication for done years, however since January I've had a rash on my shins that's dry and itchy, inflamed and now sore due to all the itching. It's spread to both shins and now my inner thighs and one arm. I don't sleep that well due to the itching and I bleed due scratching. So fed up 😔 I take antihistamines but they don't do much, had various creams from the docs and that's not worked either. I've finally been referred to the hospital for tests as the GP thinks it could be pritibial myxedema. However my appointment isn't for a few more months yet! I was just wondering if anyone who has had it diagnosed has had these symptoms, what tests they had and how they manage/treat it? It's really getting me down and I just would like to know if there is light at the end of the tunnel?

[Jackie]

Hi My severe eczema started like this.

Best wishes,

Jackie

[lesleyjehan]

Hi, my legs were extremely swollen, itchy, red and HOT to the touch for YEARS! Diuretics didn't help with the swelling either. My shins measured 24-26 "! The only diagnosis I got was Cellulitis and the ONLY way to take the swelling down was complete bed rest. I've lost 6 stone in 5 months and been put on a drug called Canagliflozin instead of Metformin SR, (it's a diabetic drug,) and my legs instantly reduced to a normal size. Diuretics NEVER worked on me but the new drug has me going to pass urine around 7-8 times per day instead of the 3-4 times befor the Canagliflozin.

Good luck

[HypoHim]

I am not a doctor but I did think that pretibial myxedema is usually a symptom of Graves' disease and not hypothyroidism generally. Was your hypothyroidism caused by treatment for Graves, or did it develop naturally (e.g. Hashimoto's)? Hopefully when you're referred to a dermatologist they will know more about it.

[Clutter in reply to HypoHim]

Hypohim, pretibial myoedema is usually experienced by Graves and Hashimoto's patients but does affect a minority of non-autoimmune hypothyroid patients.

[HypoHim in reply to Clutter]

Interesting! I had read that it was mainly Graves patients, like thyroid orbitopathy. I had terrible myxoedema when my TSH was over 100 (face looked like a giant, swollen hamster) but thankfully I never had pretibial myxoedema.

[cuteyoungchic in reply to HypoHim]

Hi HypoHim,

I have pretibial myxedema on my lower legs, quite a lot of it. It started prior to my being tested for thyroid symptoms. My GP recognised it as a hyperthyroid symptom, & so sent me to an endocrinologist for thyroid testing. The endo had never heard of it!

I've found in many places on Google, that it's a result of Graves', but not it's cause.

I'm now off medication for Graves, but the pretibial myxedema doesn't look like shifting any time soon.

I'm currently observing what I eat each day, as I wonder why many nights I'm awake for hours from the severe burning on both legs, but not other nights. I'm already gluten free.

I'd had an extremely anxious year when I developed Graves, but no longer have any reason to be anxious.

One article I read a few days ago, said it's caused by an accumulation of hyaluronic acid, so I'll have to do more searching . . . . .

Cheers,

Liz

OZ

[greyhazylady]

I really feel for you, I have had a similar condition but was never diagnosed. On my shins it was the same then itchy spots like chicken pox. It went to other parts of my body and I was told it was psoriasis. I used natural creams and vitamins. I would get it worse in the summer. This is the first year I have not had it. Have you tried using witch hazel and glycerine. It helped my scalp this time around. I kept the area clean and applied the gel 2 times a day, it took about a month to clear and I still use it now. You can get it from Boots chemist. I hope this gives you some relief.

[cuteyoungchic in reply to greyhazylady]

Hi greyhazylady,

I too have psoriasis, since 1972 immediately following a car accident. I've got used to it now, as it seems to only want to be on my elbows & the odd 1/3 of an inch dry spot on my lower legs.

I have found though that if I'm taking quite a high dose of B6, that the psoriasis is greatly reduced, if that's any help?

[Rosyp]

Thanks for your replies. Sounds like you've all been suffering too. I know the condition is usually associated with graves but can sometimes come along with an underactive thyroid. I don't have swollen legs though. Is that always a symptom? Not tried witch hazel but e45 seems to have helped the older rash. It's the new itchier sort that I'm struggling with. It looks different on my thighs though. Could that be something else or does it just look different on different parts of the body? X

[galathea]

Pre tibial myexodema is more common with Graves but sometimes happens with hypothyroidism too. Treatment is with cortisone cream. You can buy a fairly mild one over the counter and your doc can prescribe stronger ones. Would be worth trying the mild one. E45 do a cortisone cream I think.

G x

[NadeNud]

Could you ask your GP to slightly raise your medication to see if symptoms are relieved? This may provide some relief as you have to wait a few months. Then, if you experience some relief, it could provide useful evidence for your specialist appointment.

If you are on Levo, maybe you could raise it by 12 mcg (breaking a 25mcg tablet)?

I hope you find the relief you need, soon.

[Lizzy1606]

Try not to scratch it i know easier said than done.But its what they call the itch scratch factor .When you scratch it ,it itches more.I know its hard.I use Oilatum Cream you can buy it anywhere.You can also get it oil for the bath.It may help until you go to the hospital.

[Rosyp]

Yep, definitely easier said than done! The itching drives me crazy! My GP said I should just take antihistamines. They don't do much. Does anyone know if you can get stronger ones than over the counter prescribed? I'm sure the scratching is making it far worse?!