Just been diagnosed with thyroid acropachy and pretibial myxedema. Anyone else have this? Been 14 years since diagnosis of Graves’ disease

[Almostdarla]

Would like to hear of treatment and prognosis of others with this diagnosis

[shaws Administrator]

When someone reads your post re Graves etc who has the same conditions will respond. In the meantime these are a couple of explanations which you probably are aware of now:-

Acropachy - en.wikipedia.org/wiki/Acrop...

pretibial myxedema - en.wikipedia.org/wiki/Preti...

I hope the doctors will respond with proper treatment for you.

[Almostdarla in reply to shaws]

Thank you.

[ling]

Hi darla, how have you been managing your Graves these 14 years?

Have a look here. Appears there's a book with a chapter on -

Pretibial myxedema (Figure 10-8) and the other remarkable abnormalities of "thyroid acropachy" are discussed in Chapter 12.

I have not yet looked for the book so am not able to advise further. Apologies.

Graves’ Disease and the Manifestations of Thyrotoxicosis

DeGroot LJ.

ncbi.nlm.nih.gov/books/NBK2...

Best wishes.

[Almostdarla in reply to ling]

Thank you!

[ling]

Hi again darla,

You might be interested in this -

Graves’ Disease: Complications

ncbi.nlm.nih.gov/books/NBK2...

[Almostdarla in reply to ling]

Thank you

[bongling]

Hello Darla - I've also been diagnosed with acropachy and PM, causing painful, swollen hands and feet. Nothing on offer to help from the NHS - they say there's no treatment- but a herbalist has helped a lot with detox treatment. How are you getting on and have you discovered a cure?

[Almostdarla in reply to bongling]

Thank you for your reply. The only treatment I have had is steroid injections in my feet and one place on my leg. My fingers have not been effected. I am lucky because I have not had pain with this condition. My biggest concern was that my feet would continue to swell until they looked like the elephant feet that you see in the few photos you can find on Acropachy. What has the herbalist advised you to do?

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[bongling]

Yes, I too have been worried about the swelling. The dermatologist told me that it's caused by a sugary substance that starts as liquid but then can solidify. I find that swimming helps a bit to reduce the swelling. I've had this condition for almost 2 years and it's slowly improving. The herbalist thinks that improving gut health may be helpful. Did the steroid injections help? Thanks

[Almostdarla in reply to bongling]

Yes the injections did help but you can only have it a few times. It did make the hard knots go away but I can see them starting to return. I also have had it for 2 years. Before the injections I could no longer wear any of my old shoes. I had to buy bigger shoes which are too big now. But I’m keeping them in case my feet get bigger again. Do you have TED - thyroid eye disease too? I do and it’s terrible. I have double vision and blurry vision, bulging eyes and impossible to see outside in the sun. A new drug came on the market January of 2020 for TED. It’s 8 infusions that you get one once every 3 weeks . It helped with the watering of my eyes and temporarily helped with the bulging but not the double vision.

[bongling in reply to Almostdarla]

Hi there - yes I had the eye disease too with all those symptoms but it did go away after about 2 years - so hopefully it will for you too (and then the acropachy came along!) I think stress makes it all worse...

[Almostdarla in reply to bongling]

You’re very lucky then that it went away. I’ve had it for 12 years and it’s gotten worse. I’m not under a lot of stress thank goodness. But the thyroid hormone that causes it ( I can’t think of it) is extremely high in my tests. My endocrinologist says there’s nothing to do for it -no treatment. Just have to live with it.

[ling in reply to Almostdarla]

Were you not advised to have a thyroidectomy?

[Almostdarla in reply to ling]

No, here in the US they prefer to do RAI.

[ling in reply to Almostdarla]

U decided against definitive treatment for the Graves?

[Almostdarla in reply to ling]

No, I’ve had RAI 16 years ago and am on synthroid daily.

[ling in reply to Almostdarla]

Oh. Did the RAI worsen the TED?

RAI 16 years ago, and the acropachy and pretibial myxedema only developed much later, and when you were no longer hyperthyroid. Its pretty scary.

[pennyannie in reply to bongling]

Graves disease is said to be stress and anxiety driven:

I found the Elaine Moore Graves Disease Foundation website the most well rounded of all websites and Elaine has also had several books published.

Elaine has Graves and went through RAI thyroid ablation and finding no help with her continued ill health started researching this poorly understood and badly treated auto immune disease herself.

Elaine has written and researched extensively on Graves, Graves Ohphalmology and AI thyroid disease for which, currently, the mainstream medical have no answers.

I too had RAI thyroid ablation back in 2005 and became very unwell around 8 years later. I was refused any treatment options other than T4 - Levothyroxine and so I decided to self medicate and I now manage lingering Graves, thyroid eye disease and hypothyroidism and taking full spectrum thyroid hormone replacement and am much improved.

[bongling in reply to pennyannie]

Thanks, that's helpful

[bongling]

It's a complex disease isn't it? And it definitely doesn't stick to your thyroid!

[bongling]

Have you had the covid vaccine yet/any effects on the eye disease or acropachy?

[Almostdarla in reply to bongling]

Yes I’ve had both Moderna vaccines. No problems from either and no change in eyes or Acropachy

[bongling in reply to Almostdarla]

That's good to hear, thanks

[Almostdarla in reply to bongling]

Just following up to see if your condition has improved. Unfortunately mine has gotten worse. Acropachy is worse and so are my eyes. Even though I had RAI 17 years ago my endo wanted me to have a thyroidectomy this summer to see if that would help but so far it hasn't. Would like to know if you've discovered something that has helped you.

[bongling in reply to Almostdarla]

hello and so sorry to hear you've got worse. Its a horrible disease. My herbalist did some tests on my gut bacteria (which apparently impact autoimmune diseases) and Ive been supplementing with the missing bacteria for about a year. It's made a huge difference and has improved my pain and mobility. But my endo cant find any info on acropachy and how long it normally asks - she just says it's very rare.

[bongling in reply to bongling]

lasts not asks!