Possible reaction to Cabinmazole or Vitiligo? - Thyroid UK

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Possible reaction to Cabinmazole or Vitiligo?

Bernie555 profile image
13 Replies

Hello --

I was diagnosed with an overactive thyroid on 1 July. Since then I have been on 40mg Carbinmazole and beta blockers. A week into taking the meds I noticed tiny (3mm diameter) white spots appearing on my arms, and legs. Some have a tiny red pinprick mark in the middle, others are around freckles (i.e. pigment of freckle is still there). I've been getting more and more and have a few on my face. I'm quite pale so they're not hugely noticeable but it's distressing. I also have had a swollen lymph node for about a week now.

GP said it wasn't presenting like vitiligo and because it's not itchy it's probably not a fungal infection. They've referred me to a dermatologist but I won't seem them till 8 August which feels like a long time when the problem gets worse every day! I've been calling to check for cancellations but so far no luck.

I also hadn't seen a Endocrinologist yet, so had been calling to check for cancellations there, which they're weren't but when I described the white spots and swollen lymph node to them on the phone they brought me in today to the investigations unit. The Dr. took blood for Thyroid Function tests and blood count panel AND took me off Carbinmazole and put me on Propylthiour. Regarding my skin he didn't know and said it could be a reaction to the meds and that I need to see a dermatologist.

In the meantime he advised me to put E45 on my skin, wait 30 min and then apply Hydrocortisone 1% on the spots.

I'm sorry this is so longwinded! If anyone else has had white spots like mine as a reaction or if you know that if there's a freckle it's not vitiligo or any insights on how I can best take care of myself between now and seeing the dermatologist would be really helpful.

THANK YOU !!!

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13 Replies
Hennerton profile image
Hennerton

Not exactly what you are asking about but when I was on carbimazole, developed fluid filled blisters on my feet. My Endocrinologist said they were not a side effect and offered no help at all (usual type of reaction one expects, sadly). They disappeared when I came off it and had a Thyroidectomy. I would guess your spots are a similar reaction, probably unique to your body. Not much help, I am afraid but maybe the change of medication will help. I was never offered anything different, so you are fortunate in that respect.

Bernie555 profile image
Bernie555 in reply toHennerton

Thanks for this. I’m trying to figure out if my white spots are a reaction to the drug or the beginning of vitiligo. If it’s the latter then I’d love to know what prevention precautions I can take while I wait to see the dermatologist. Very best.

Lora7 profile image
Lora7

I came out in a rash when I was taking carbimazole so my gp changed my medication to PTU which I wasn't allergic to. If you look at the drugs information leaflet a rash is listed as one of the side effects. Why don't you ring a pharmacist, many years ago I worked in a hospital pharmacy in admin and the amount of Doctors contacting our pharmacists for advice were several a day. A pharmacist studies drugs for 4 years at university and they know a lot more about them than Doctors do.

medicines.org.uk/emc/produc...

Bernie555 profile image
Bernie555 in reply toLora7

Thank you! I will call them. That’s a great idea.

deb25426 profile image
deb25426

My own experience of Carbinmazole was a severe allergic reaction, red itchy whelts on my body all but my face and feet.. swollen hands, feeling quite poorly, it started as little itchy bumps, like stings. Also a very achy sore throat...A GP told me I’d had a reaction to some orange juice!!!!!!!!! Ended up going to A&E several times over 3 days (it’s was a Christmas time)for intravenous steroids and piriton.. if you really unsure, go see another doctor! And if I remember right you have to be careful on Carbinmazole because of your white blood cells... I’ve not told you all this to scare or anything, just my experience. Read the flyer that is with your meds. If in doubt get a second opinion off another doctor.

Bernie555 profile image
Bernie555 in reply todeb25426

Thank you for this. Yes they’ve changed me onto another drug and they’re testing my bloods. Your advice to get a second opinion if I’m unsure is great. Thank you!

Fruitandnutcase profile image
Fruitandnutcase

I took 40 mcg carbimazole for a year and didn’t have any problems - couple of minor sore throats in the beginning when I had my white blood cells checked but there wasn’t a problem.

What your man did was what you are advised to do if you have carbimazole problems - stop taking it!

I have a patch of vitiligo on my right forearm. I’ve had it all my life and I only really notice it when my skin gets a bit tanned in summer - it stays paler. I’ve noticed recently that I have little white spots that I suppose look like freckles on my arms but they cause no problems, aren’t itchy and have no red marks about them. I should add that I think that as I’m 70 they could be caused by age - I’ve also got a couple of pale brown age spots on one hand that are fairly recent.

Have you taken an antihistamine for the itching that might help a bit.

Three months was the standard waiting time to see an endocrinologist when my Graves was being treated. My GP started me on 20 mcg carb and after four weeks I had a blood test and because we file share with our local teaching hospital the endo contacted me by letter and told me to get more from my GP double the dose - unfortunately I didn’t have a blood test for two months so by the time I got to see the endo I was hypo. So if you are on that level of carb for a long time it might be worth having more regular blood tests than I had.

Good luck with it all!

Bernie555 profile image
Bernie555 in reply toFruitandnutcase

Hi — thanks so much for sharing all of this. It’s very helpful. All the best !

Fruitandnutcase profile image
Fruitandnutcase in reply toBernie555

Thank you.

Daffers123 profile image
Daffers123

I have vitiligo and it doesnt sound as you describe. It's like a sun tan developing in some places, not others. Mine is mainly on neck luckily not face yet. Nothing like blisters, pimples etc, just discolouration of skin.

Gilbo72 profile image
Gilbo72

My mum had vitiligo as long as I can remember. She insists she got it when she was 17 after burning very badly. I never really noticed it on her as she was just mum. Over the years it did spread and get bigger. She never realised it was an autoimmune disease.

I am in my 40’s and am quite dark skinned (apparently vitiligo is more common in darker skins). I developed Hashimotos in my 30’s, one of the first things I thought was now I have an autoimmune disease, I am more likely to develop others - I hope I don’t get vitiligo! The last couple of years I have also noticed white/pink spots on my otherwise tanned arms and legs. They are only a few mm across and are like reverse freckles. I do think they are the very start of vitiligo. However I am trying not to get too hung up on it. I think I have to take the approach of avoiding gluten and if in years to come it gets worse, then look at other autoimmune trigger foods. Lots of sun cream, and if the worst comes to the worse, I just will avoid tanning and there is great scar/vitiligo make up out there! Ha ha. What I have learnt, the people who love you, won’t notice it! I wonder if yours is a reaction. X

serenfach profile image
serenfach

As Daffers123 says, it does not sound like Vitiligo. I have it now over most of my body, face, scalp, everywhere. It usually appears as a lack of pigment in an odd shape, hardly ever round, and different sizes. I am very pale so get away with it in winter, but use false tan cream in summer to disguse it a bit, colouring in the blobs on my face and arms. I now have a Cruella DeVille white streak through my hair, and suspect I may get more, but it does not bother me.

Autoimmune conditions like to join in with others, and I now have 4, which seems a bit cruel - I have offered to give one away to friends but for some reason, they have declined! :)

Fruitandnutcase profile image
Fruitandnutcase in reply toserenfach

The front of my hair went totally silver when my Graves started. I’ve not exactly got a Cruella DeVille stripe but I’ve got lots of silver on the underside so that when I pull it up onto the top of my head I get lovely big silver stripes. I had completely forgotten the vitiligo is an autoimmune condition - so that’s yet another one for me too. Interestingly enough I’ve had the patch on my right arm since I was a child - pretty obvious in summer because I have darkish skin and I tan very easily, like you not all that obvious in winter - besides I’m mostly covered up.

Yes, I’ve found that autoimmune conditions all tend to invite their friends round to stay. So annoying.

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