Vitiligo: Has anyone got any experience with this... - Thyroid UK

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Vitiligo

morena profile image
23 Replies

Has anyone got any experience with this? Ive just found out Ive got it. Very depressing and another thing to think about. Be glad to hear from anyone who's got this.

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morena profile image
morena
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23 Replies
bobsmydog profile image
bobsmydog

Yes I think that's what I've got - I have little round patches on arms and back where pigment has gone. Also have Raynaud's (get numb white finger tips) and I wonder if they are related.

Seeing a rheumatologist in a couple of weeks because I tested positive to ANA so will report back if anything useful is gleaned.

morena profile image
morena in reply to bobsmydog

Whats ANA? If raynauds is autoimmune that would be the connection. If your thyroid is autoimmune they're all linked. You need to be very careful if the pigment has gone in your skin; high SPF. Im about to try something that may cure it.

bobsmydog profile image
bobsmydog in reply to morena

ANA is anti-nuclear antibodies which attack the nucleus of the cells I think and yes I think Raynaulds is autoimmune. But I tested negative to thyroid antibodies apparently!

What is high SPF?

morena profile image
morena in reply to bobsmydog

SPF is sun protection factor....

shaws profile image
shawsAdministrator

It's quite common if we have one autoimmune condition that we might get others. This is previous posts re Vitiligo.

healthunlocked.com/search/v...

Jacquid profile image
Jacquid

Yes, have had it all my life, my first autoimmune condition. No problem, just unsightly and you HAVE to keep out of the sun. Sun is dangerous.

Rimmel Sunshimmer comes in 3 shades, you can mix them to match your skin tone and just do some colouring in! They even have a waterproof one now.

bobsmydog profile image
bobsmydog in reply to Jacquid

Oh, doctor didn't tell me sun is dangerous - I've been going into sun as much as possible lately....

Jacquid profile image
Jacquid in reply to bobsmydog

You need to put sunblock on the patches, vitiligo means you have NO protection against the sun. Should really be 100% block but I use SPF50, Nivea kids is good and I try to keep out of full sunlight x

morena profile image
morena

thanks. I knew about the sun which is what i found depressing - i love the sun! If you protect well Im hoping its ok. I only have it on my face at the moment. Looking into sunblock.

Emjaytee profile image
Emjaytee

I have a few small patches of vitiligo but also have hyperpigmentation which is far worse, my entire front torso looks as though it's stained and have patches on my face and forehead and old scar wounds which are impossible to camouflage with foundation. If anyone here know what may be causing it or what might help return my skin to normal I'd be eternally grateful. I'm sick of hiding indoors in the summer and looking as though I have stains on my face :( I also started suffering from Raynaud's a few years ago .... wonder what the link is? :/

bobsmydog profile image
bobsmydog in reply to Emjaytee

ha! I have a couple of small patches of hyperpimentation on my face and I have like brown stains surrounding my lips which might also be hyperpigmentation?

I will ask what the connection is, if there is one, when I go to my appointment

Emjaytee profile image
Emjaytee in reply to bobsmydog

That'll be interesting bobsmydog, when is your appointment? I've been given hydroquinone cream for the hyperpigmentation in the past and it was effective at fading it to a degree but it is only a temporary solution and I was worried about the side-effects, I already have quite thin skin so I didn't continue with that.

bobsmydog profile image
bobsmydog in reply to Emjaytee

Appointment on 26 June, will report back if anything useful is said

Emjaytee profile image
Emjaytee in reply to bobsmydog

Thanks bobsmydog, wishing you the best! :)

SniffVicks76 profile image
SniffVicks76

Just join here yesterday. I have had raynauds all my life, diagnosed 2 years ago.

Last year diagnosed with vitiligo.

Yesterday I was told by doctors receptionist (so no details until Monday) I have Vit D difency and also under active thyroid.

Trying to get my head round it and about it all being linked!

Vit D = go in sun

Vitiligo = being told by specialist to stay out of the sun! Ahhhhhhhhhh. Lol

Jackie profile image
Jackie

Hi I have had it for years, honestly nothing to worry about.

Jackie

sandyal profile image
sandyal

Hi Morena, I have Vitiligo. It stated in 2012, I then investigated an ache on my throat and eventually had a positive blood test for thyroid peroxidase antibodies. I am nearly 60 not sure if this is important but have a feeling that age and thyroid issues may be linked to vitiligo. I would be good to have some statistics?

I first read Emily's story on vitiligo and this set me of on a trail of research for vitiligo and then on Hashimotos which the doctor has not confirmed but I have raised antibodies and raised TSH. I checked out my stomach acid which was very low and started taking Nutri Advanced Metagest high strength Betaine HCl with Pepsin. I have excluded gluten and soy from my diet and supplemented with Vit D, trace minerals and omega 3 and some others as I have come across them. it is not scientific and I do have concerns about overdoing the supplements over a long time. I have had one 40 session treatment of ultra violet B light therapy ' UVB' and would like to have another as I did experience some re pigmentation. Unfortunately re pigmentation seems to have slowed or stopped. At the moment I am considering taking Low dose Naltrexone and removing my Mercury amalgam fillings.

I am very interested in finding ways to camouflage my white patches and am grateful for the information on Rimmel sun shimmer. I would really like to be able to successfully camouflage the sweaty bits of body that rub together! so that I can take my wet suit off and on, on the beach without worrying that I am going to have bright white skin under my arms and between my legs. does anyone have any ideas?

If I could successfully camouflage my skin colour I would be able to relax about the vitiligo.

Not sure if I have helped or depressed you further? There is research to be done-

Oh and by the way I personally do NOT worry about going into the sun as I need the vit d. but I don't usually over do it.

Good luck.

Secondchance profile image
Secondchance in reply to sandyal

Have you tried fake tan? You can get organic ones. Viva liberté or something like that.

sandyal profile image
sandyal in reply to Secondchance

Thanks I will certainly try fake tan. just not sure if it will look patchy?

Secondchance profile image
Secondchance in reply to sandyal

Not sure. I have a small amount on my forehead covered by hair so I might try it out there and let you know. It might be different for larger areas though.

morena profile image
morena

Hi Sandy; thanks for all this; my vtiligo is only a small amount at the moment, but on my face. Id really encourage you to rethink going into the sun; with vitiligo you will have NO protection...none.....and the sun is dangerous even with the small amount of protection normal skins have. Perosnally I will go into the sun but make sure I have a high SPF ,,,, 50 or more.

proffishopper profile image
proffishopper

Hi Morena

This is another autoimmune system disease. I suffer from it mainly on my hands. I also suffer with thyroid problems, three years ago was diagnosed with systemic sclerosis with raynauds. the list is endless. I do like to go out in the sun, I make sure I am well protected and use after sun liberally afterwards. I have been told it can reverse itself if your body stops attacking itself. Enjoy the sunshine it does have a good feeling factor.

Best wishes

proffishopper

Winter87 profile image
Winter87

I have vitiligo and have had it since a very very young age. It has spread rapidly the last couple of years. My hands have been sunburnt since June and itchy as hell. Definitely don't be in direct sunlight for long. It never used to bother me but it's unsightly and I hate the usual dodgy fake tan comments but oh well, just have to accept it and embrace it I guess

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