Late onset vitiligo?

[Maryandmoses]

This year has been an absolute shit show from start to..... well, now. Back in April I randomly had one white eyebrow hair. I started greying at age 18 so this wasn't unexpected. Plucked it out and moved on. Next day there was a perfect white circle of about 12 eyebrow hairs. Random. But ok. Two days later the middle half of one of my eyebrows is whiter than white. Then it stopped spreading. Google tells me thyroid (blood test shows TSH is fine). A random tiktok I found told me it's vitiligo and in about 6 months I will be able to see a more pale patch of skin. Mentioned it to two different doctors and both put it down to normal aging. I'm 40. My kids laugh about it. My sister says I look like Anna from frozen.

Anywho.... have been stood by my back door in the morning sunshine this morning to pluck the chin hairs and there is now a pale patch of skin from my eyebrow down to my eye and across my eye bag. So of course I started to cry, because.... hormones. But where do I go from here, if anywhere? I assume Dr to ask for referral to dermatology, alrhough if no treatment is there any point? But has anyone on here had late onset vitiligo that could offer any advice? I am generally a very anxious person and struggle with anything that draws attention my way and this really isn't helping. If it is, will it continue to spread until it gets to a certain point and then stop or is it ever changing?

I was diagnosed with vitiligo about 20 years ago, when I was mid twenties. It started with a very small patch in one area and new ones kept appearing and growing. I had difficulty getting a GP to refer me at first as they were very dismissive, so be prepared to stand your ground in case you have similar (hopefully not!). When I did finally get a referral, the first consultant was also very dismissive - they said that as I'm white it shouldn't make much difference to me so why was I bothered 🙄 So I was essentially turned away because of my race (I did put in a complaint which was upheld!). After several years and it getting progressively worse, I decided to try again and got a better consultant - though he was very honest with me that, although there were several treatments we could try, they were unlikely to have any effect. Sadly he was correct, though I was at least happy to have been able to try.

Since then it has basically spread across my whole body - I'd estimate I only have about 5% pigment left. I'm much happier now it's so advanced as I just look pale - I keep the few small pigmented areas covered up and no one would ever know. I have to be incredibly careful in the sun though as I burn in a matter of minutes as my skin has absolutely no natural protection left.

I will be honest with you that the years in between diagnosis and it reaching this advanced stage were very difficult for me. Like you, I hate drawing attention to myself, and I found people staring if I wore a t shirt etc very uncomfortable. I started only living in trousers and hoodies so I could be as covered up as possible, and I found some excellent cover up make up that made my face look a uniform colour. I got by, but there were a lot of tears along the way. I am absolutely fine now though and happy in myself again now I'm a uniform colour once more!

I am quite an extreme case though - lots of people out there only ever develop one or two small patches and it stops at that. Hopefully that will be you 🤞 Also, I believe there are some other skin conditions that mimic its appearance but are completely treatable - hopefully a referral will be able to confirm for you one way or another.

I have vitiligo. It mostly affects my hands and feet but there is sometimes a little bit on my face. It started when I was in my thirties. I'm in my sixties now and it is at more or less the same level.

Because of my ethnicity (I am white) it only shows when my skin is a bit tanned by the sun. I think it is completely fair and appropriate to regard it as a MUCH more minor condition for white people than it is for people of colour, for whom it is so much more evident, particularly given that there is no easy, reliable treatment for the condition.

I understand that there are some treatments that have some effect, but really the main solution for a white person is just to use plenty of sunblock. I'm not bothered by my hands and feet, but I use sunblock on my face when I become aware of vitiligo there.

Almost no one notices my vitiligo. The only time I have ever had a comment was from someone whose DH had the same condition, so she just said something like "Ooh, you are like my DH."

It is an auto-immune condition, I think. Like all auto-immune conditions it can be triggered by something or other in the environment but is genetic in origin, and it follows a very unpredictable and idiosyncratic path.

@RandomlyGeneratedTriad I assume your comment about it being more noticeable and worse for people of colour and only minor for white people was aimed at me. Which I completely agree that is is much, much worse and more obvious for darker skin types, and I certainly wasn't saying otherwise. I was just relaying my experience that some doctors were wrongly dismissive of my condition because I am white - as far as I am aware we don't gatekeep medical treatments in this country based on race! Which the NHS agreed completely with and my formal complaint was upheld. I was absolutely entitled to attempted treatment under NHS guidelines.

I'm genuinely really pleased that you haven't been affected negatively by your vitiligo and that it isn't widespread and is only noticeable when you tan. I was quite an olive skin tone before and it was very noticeable on me year round, no matter what my tan levels were. The amount of staring I had was awful. Mocking comments asking why I was so bad at applying fake tan etc. It affected my self confidence and mental health significantly for about a decade and I'm only just coming through the other side now I am essentially without any pigment all over.

This is actually the first time I've felt ready to share my experience with anyone other than my husband and kids, and it has quite upset me that a fellow vitiligo sufferer would be just as dismissive of my experience as those first couple of doctors were.

Anyway, I don't want to derail the thread, and I wish @Maryandmoses all the very best.

Apologies, @agoodfriendofthethree . I didn't mean to sound as dismissive as I evidently came across and I'm sorry. I don't think I was aiming anything negative at you, just making a general point about how relieved I feel by its minimal impact on me compared with someone of dark skin. I think it was prompted by your remark but wasn't meant as a criticism

I guess I tend to underestimate the significance of my vitiligo because for me it clusters with alopecia. I have always experienced it almost as a kind of 'comic relief' from the stresses of hair loss. But that is absolutely not to say that others won't experience it differently, and if you have olive skin where it is visible all year round it is clearly more serious for you.

@RandomlyGeneratedTriad thank you, I really do appreciate your reply and I think we are actually in agreement on everything 😊 I'm sorry to hear about your battle with alopecia - I suspect we have a lot in common really, just experienced through different conditions. I genuinely am pleased that the vitiligo hasn't affected you too much at all - my sister in law also has it very mildly and no one would ever know. Thank you again, I do appreciate you taking the time to respond so thoughtfully.

I was diagnosed with vitiligo about 35 years ago and at that point it was just a few small patches on my hands. I saw a doctor about it and was told there was no treatment, it was “just one of those things”, and not to worry about it. Interestingly, he also said it was carried on the same gene as diabetes, which is something a lot of my family members have/had, but when I asked if it meant id develop diabetes, he was very dismissive. A couple of years later, I had my first child, had gestational diabetes and though that disappeared, I was diagnosed with Type 1 diabetes six months later. My sister has mild vitiligo and also has thyroid problems, so I think there’s a distinct link between vitiligo and some autoimmune conditions.

My vitiligo has developed with time, and every summer I notice new patches here and there in random places (but generally sort of symmetrically). Sometimes people notice, but I’m not that bothered any more. It is what it is.

Thanks, @agoodfriendofthethree . I've just remembered that I watched one of those tacky dermatology programmes on telly a while ago, an American programme. And there was a woman who had vitiligo on her face. She was white but it was noticable (perhaps because of living in a very sunny part of the US) and it distressed her a lot.

I think that the doc did offer her some treatments that were meant to mitigate it, but as I recall the effects weren't likely to be dramatically effective.

Often there's a bit of a trade-off with auto-immune treatments, too, if the side effects are grim.

There's new research coming through all the time, though.

Thanks for the responses everyone. I will get on to the Dr tomorrow and get it noted. I checked with my daughter and she can definitely see the lighter patch as well. I was hoping I'd imagined it. I am generally very pale but prone to overheating as soon as temperatures are over about 10 degrees outside and am always flushed bright red. I think the white eyebrow will be the main noticeable issue. I tried using an eyebrow pencil but it sweated off almost immediately.

@Maryandmoses I’ve just discovered this thread whilst googling my own symptoms as I have also recently developed a white patch on one eyebrow and a pale patch on my forehead above it. Dr Google tells me vitiligo or pityrius versicolour although more likely vitiligo. Can I ask if you were diagnosed with vitiligo in the end and whether or not yours worsened? Panicking a little and your description sounds exactly like mine! Thanks in advance

Mine hasn't worsened at all. No diagnosis. I don't glow under the UV light so they put it down to aging. Which is ridiculous to be honest. But what would I know. I did have a customer at work tell me last week that his teachers eyebrow did the same after she had her baby. I did have a bad injury about 6 weeks before mine turned so maybe it's related to that? I don't know. Hope you get answers for yours

Thanks for getting back to me, good to know yours hasn’t got any worse. I think because I have a paler patch above my eyebrow as well that it can’t be just aging… am also pretty menopausal though so wondered if hormones / life stress has triggered it. Did GP do the uv light on you or did you have to wait to see a dermatologist for that? TIA xx

I just bought a UV torch off amazon for less than a tenner. Did the same job. Saved waiting ages for referrals. I have a pale patch beneath my eyebrow but it doesn't glow so I didn't chase it any more