Vitiligo: Does anyone have vitiligo, I ask as for... - Thyroid UK

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Vitiligo

Mrsgee profile image
16 Replies

Does anyone have vitiligo, I ask as for years, pre thyroidectomy and Hashimotos I have had white patches on my wrists which look dreadful especially in the summer, had asked my GP but never got any answers, does anyone have experience of this, I'm now on vit D post thyroidectomy and wondered if it will improve........I believe it can be as a result of an autoimmune disease so I'm thinking Hashimotos and now the thyroid has been removed is it likely to improve?

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Mrsgee profile image
Mrsgee
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16 Replies
Clutter profile image
Clutter

Mrsgee, I don't think there's a definitive answer. Vitiligo may be an autoimmune disease and may be triggered by other autoimmune diseases like Hashimoto's.

nhs.uk/Conditions/Vitiligo/...

niams.nih.gov/Health_Info/V...

polly3 profile image
polly3

I have vitiligo.....I have always understood it is an autoimmune disease that is associated with pernicious anemia. Minenare on my hands but not too bad, armpits and inside of thighs. I have also rea d it maybe be treated by b12/b vitamins.

SVA57 profile image
SVA57

Mrsgee, I read somewhere that PABA supplement is effective in treatment of Vitiligo.

I was diagnosed with morphea which is dark patches on the skin when I was 27 not sue what that meant as it was never explained and I was never offered any treatment just told to live with it. I also have hashi seem like you get a lot of different things with hashi. If anyone knows anything about morphea, ps I only have about 6 different patches but I get so used to them I have given up looking.

Seabob profile image
Seabob

Hi on Dragons Den last night a lady who has this condition was promoting a product she has produced which helps cover it up...I know it's not a cure but I thought I would let you know..one of the dragons in supporting her to help make the product available for all.

Mrsgee profile image
Mrsgee in reply to Seabob

Thank you for your reply.......funnily I saw the same and I thought I would Google vitiligo and the result showed connection to auto immune conditions. I've been on levothyroxine for years, thyroid issue most of my adult life, rel problems for the last 6 years and chronic for the last 2/3 years kept going to the GP with not much being done and feeling let down and angry as I ended up resigning my job as I could not cope with it.....so so poorly, looking back now and being on this forum has helped me understand so much.....there have been so many trigger points that have been over looked, put down to "well you are getting older" I am sure the result may have been the same as far as the thyroidectomy but I just feel with the right support and understanding I may have been able to remain somehow strong enough to continue working. Thank you for your reply I will look into the coverup.

Marz profile image
Marz in reply to Mrsgee

Once I was diagnosed and receiving better treatment my vitiligo on my neck disappeared. Also I am now able to tan - which did not happen before. Tanning is an immune response so when the immune system is haywire these odd things happen ! Do you think you are optimally treated ?

maggi999 profile image
maggi999 in reply to Mrsgee

I developed vitiligo about a year after having Barr Epstein (mono) in 1983.

I was diagnosed with hypo in 1999 and developed fibromyalgia around 2007, though this wasn't diagnosed until January this year.

I've read a lot recently about fibro being 'triggered' by things such as the Barr Epstein virus. To be honest, it looks to me like it has triggered vitiligo and hypo as well. Curse whoever passed that virus on to me!

Tina_i_am profile image
Tina_i_am

I have vitiligo. I noticed it on inside of my wrist and fingers many many years ago. I don't think it ever goes. I think the melanin is gone in those areas forever, it's been destroyed. It just shows up more in summer as the rest of the skin tans and those areas stay white.

Five years ago I had a total thyroidectomy due to papillary thyroid cancer (had no thyroid problem before). Vitiligo is still present, not better and no worse.

serenfach profile image
serenfach

I have vitiligo, and had it for years before my thyroid went haywire. I now have it on about 50% of my body and patches on my face and neck, even on the scalp so I have a grey streak. I use St Tropez tanning foam as this is about the only one that does not rely on the reaction to melanin. Most tanners react with the melanin to give a tan, but of course, if you dont have the melanin in the first place....!

One doctor,when I was in hospital for something else, pointed to it and told me to wash more thoroughly. He got told in no uncertain terms that he was an idiot, and he should go back to school!

hose1975 profile image
hose1975

I mentioned the fact that both my parents have vitiligo to my Endo and she said that one finds it a lot in people with other autoimmune conditions, especially hypothyroidism.

maggi999 profile image
maggi999

When I developed vitiligo in 1983 my GP at the time told me that it was in the same group of autoimmune conditions as hypothyroidism, MS, Addison's and pernicious anaemia.

Did I get screened for any of those conditions? No!

I've basically had to battle for diagnoses for all my health problems -

I asked for the thyroid tests in 1999 after years of feeling tired and washout,

I asked for Vit B12 (PA) tests in 2013 and the subsequent injections,

After 7 years of being treated for arthritis (wrongly) I had to get stroppy with my GP to get referred to a Rheumatologist for my aching joints and muscles, to be diagnosed with fibro.

If I had been treated holistically 30 yrs ago I'm sure I wouldn't be in the state of ill-health that I'm in now.

What a shame we didn't have this website back then!

Mrsgee profile image
Mrsgee in reply to maggi999

Totally agree. I'm now in the throws of being diagnosed with fibro, the best incormation has come from this website where I feel supported but more importantly understood.

SAMBS profile image
SAMBS

I do! Mine started suddenly in June last year, mainly on my forearms and on my heels. My legs are ok, but this year I notice that at top back between shoulders has also got it. I did an Internet search which came up with the name and almost identical photos. When next at doctor last year, showed him my arms and he said - vitiligo, there's nothing you can do about it.

This is the one in France who will only test for TSH. It was only my request to a locum, for additional T3 T4 Feb this year, that gave me diagnosis autoimmune Thyroiditis.

Huh some doctor - he still won't say Hashimoto's, although a different doctor I saw in May for an insurance medical, immediately said Hashimoto's when he saw test results I had to take with me.

gactor profile image
gactor

Yes, unfortunately, for past 6-8 years. I'm an 'autoimmune factory', so doctor wasn't surprised I developed yet another autoimmune condition, sigh.

I supplement a lot to try to keep inflammation down in the body, since it appears to be an underlying factor in all of them. Seems to help me feel better and not get degrade as fast as I used to....

waveylines profile image
waveylines

Vitiligo is an autoimmune condition & has been linked to hypothyroidism, PA. basically the autoimmune system attacks the melanin, destroying it causing white patches -it is not known why this happens. I have had Vitiligo since i was 16yrs and now have it over most of my body -so am lily white never tan. Hypothyroidism hit me in my forties.....though the anti bodies blood tests came back negative.....now there's a conundrum!

i tried St Tropez tanning foam but it didn't work -went a lovely brown but it all washed off :( so resigned to my lily whiteness.

My hair is now pure white too. Vitiligo runs in my family -Both my brother and my grandma have it. it rarely affects the eyes -but I have noticed of recent years that I am more affected by glare but my iris remains pigmented. :)

The treatments i know off can be effective for early stages of Vitiligo but there is no guarantee it wont return even if successful. I've never had any treatment. my GP refused it years ago.

I cannot tolerate any direct sunshine anymore -go red in English Spring sunshine! OFG! So I take vitamin D3 to replace what my skin cant produce due to lack of direct sun.

You can purchase camouflage make up -if you go on the Vitiligo Society website they have details of the UK service. I've not used this service or their make up as at least I'm now evenly covered!

This year I have bought a UV blocker sun brolly to take with me to Italy - though I have hats they can be hot so thought Id try this out instead for a change and it should also cover my shoulders too. :) Obviously I don't do beach hols anymore.....lol

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