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B12 and vitiligo

AlwaysTiredxxx profile image
12 Replies

I've had vitiligo for over 20 years.

Recently and for the first time I had a vitiligo flare, where the vitiligo expanded fast and caused some itching and soreness.

Is anyone aware of any link between low B12 and vitiligo flare up? Is there any research on this?

Searched but can't find anything. I'm aware that vitiligo and B12 deficiency can commonly occur in one person. I'm asking specifically about flare ups.

Thanks

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AlwaysTiredxxx profile image
AlwaysTiredxxx
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12 Replies
Narwhal10 profile image
Narwhal10

Hi ATxxx

Sorry to here. I looked at your previous post to gain a better understanding. I can see you have transit and gut issues, folate is increasing. How is your ferritin ? Plus vitamin D ?

A functional nutritionist told me the last place gut issues show are the skin. So, yes, it could be B12 related but on the other hand, it’s always best to speak to a health professional as it may be other deficiencies and problems- itching 🤔

Frogit profile image
Frogit in reply to Narwhal10

My vitiligo started around the same time as my first gut problems about 25 years ago, the B12 problem showed up with the PPIs that were necessary for the acid problems that were a development of the Crohn’s disease that was a question mark diagnosis….not classic Crohn’s but rather more serious than IBS. My vitiligo has never flared or itched , only slowly spread in the usual way. The gut problem has flare ups and the GI specialist gave me Nalcrom (sodium chromoglycate) which actually helps. It is an anti allergy treatment. Don’t know if any of this helps to do anything other than show the complications in getting a diagnosis when B12 is involved with other conditions and it is all a bit chicken and egg.

charks profile image
charks

I have Vitiligo but I have never experienced any soreness. Just white patches. As Narwhal suggests the itching may be connected to something else. I did get itching ( and soreness ) when my diabetes type 2 wasn't under control.

Narwhal10 profile image
Narwhal10 in reply to charks

Interesting charks (horrible for you though)

AlwaysTiredxxx profile image
AlwaysTiredxxx

Hi all

Thanks for your comments.

The vitiligo flare was diagnosed by 2 dermatologists (after 3 wrong diagnosises as fungal infection by 2 GPS and a pharmacist!). I was investigated for other causes like kidney disease.

I'd never heard of a vitiligo flare until this. And never had any itching or soreness from it either until now. There's virtually nothing about it online - found one paper showing itching occurred in 20% of vitiligo people.

Oral supplements have increased my B12 and folate. Flu like feelings have gone away 🙂.

Ferritin remains low. Had to stop one multi vitamin with high iron because of effect on digestive issues. Going to eat more iron rich foods, and see how it goes.

Really just interested if anyone else with low B12 had experienced a vitiligo flare.

Thank you all🤗

ACritical profile image
ACritical

I am covered in white patches all over my body. They stand out more when I have been in the sun. Itchiness has also been a regular symptom but never associated that with having vitiligo. My hair is totally white, it started in my thirties after having my first baby. It’s now part of who I am, wouldn’t dream of colouring. Even with all the injections I have had, this has not improved. So not all symptoms disappear after diagnosis and treatment, it depends on how long you have been undiagnosed or wrongly diagnosed.

Sleepybunny profile image
Sleepybunny

Hi,

I can't find anything specifically about vitiligo flare ups and B12 deficiency.

I searched online for "vitiligo b12 deficiency research" which showed some interesting research articles that mentioned vitiligo and B12 deficiency.

For anyone reading thread who wants to know more about vitiligo,

NHS link about vitiligo

nhs.uk/conditions/vitiligo/

UK Vitiligo charities

vitiligosociety.org/

NICE CKS link (UK) about Vitiligo

cks.nice.org.uk/topics/viti...

Patient Info link about vitiligo

patient.info/skin-condition...

Bluegeranium profile image
Bluegeranium

Hi I have had vitiligo since I was 26 and never had a flare up. I was diagnosed with pernicious anaemia when I was 60 and was told that both vitiligo and pernicious anaemia are autoimmune diseases and quite often if you have one you will have another. I also have pulmonary hypertension which is also an autoimmune disease so I’m assuming they are all linked. I was put on ppi at 54 and as they make B12 absorption more difficult I feel this contributed to the pernicious anaemia. I don’t know if this information is of any help except to demonstrate that if you have one autoimmune disease you are more likely to have another xxx

Clairey25 profile image
Clairey25

HiI had a sudden flare of vitiligo when I was in my 40s, having had it since I was 7 years old. 99% of my skin is now white as well as large patches of my hair, eye lashes and eyebrows. Very shortly afterwards, I was newly diagnosed with two additional autoimmune conditions (pernicious anaemia and Antiphospholipid Syndrome) on top of hypothyroidism and Vitiligo and juvenile rheumatoid arthritis.

My specialists said that a flair of Vitiligo is quite rare but when it does happen it is often the sign of additional autoimmune conditions. I really hope this isn’t the case for you but please be vigilant and seek medical advice. My dermatologist did a whole host of autoimmune blood tests which probably saved my life.

AlwaysTiredxxx profile image
AlwaysTiredxxx in reply to Clairey25

Hi clairey25

Gosh, you've got a lot to cope with. Hope you're managing ok🤗

I am currently being investigated for various symptoms, autoimmune diseases being high on the list. Nothing found yet. My dermatologist has suggested GP should arrange an mri scan of my spine (re burning sensations).

I have so many creams to apply now for dry skin, Vitiligo flare and lichen sclerosis it's getting silly. But worth it to be comfortable.

You understand the itchiness vitiligo flare can cause, then causing disturbed sleep. I have small vitiligo patches on every area of my body now instead of the previous much fewer and larger slow moving patches. Not yet hair or eyebrows though.

Although I wouldn't wish a flare on anyone I'm glad I know someone else who has had it.

Take care

Sleepybunny profile image
Sleepybunny

Hi,

"autoimmune diseases being high on the list"

Just wondered if you'd got results for intrinsic factor antibody test (a test for PA)?

Testing for PA

pernicious-anaemia-society....

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10 - 20% of people with PA test negative on PCA test.

Gastrin test

labtestsonline.org.uk/tests...

I have read articles that suggest a pepsinogen test may be helpful in diagnosing PA.

Latest PAS newsletter Spring 2022 mentioned a new set of tests for gastritis which included a pepsinogen test.

Blood tests linked to B12 deficiency

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

It''s quite common for people on this forum to report thyroid issues.

Thyroid tests

thyroiduk.org/getting-a-dia...

May be helpful to put any thyroid results on Thyroid UK forum on HU.

In UK, GPs often only test TSH which won't give a full picture of thyroid function.

Have you been tested for coeliac disease (spelt celiac in US)?

If you're in UK, these links may be useful.

NICE guidelines Coeliac Disease (UK document)

nice.org.uk/guidance/ng20/c...

Coeliac UK (UK charity)

coeliac.org.uk/home/

I'd expect your doctors to do some basic screening tests for auto immune conditions.

See links below for examples.

labtestsonline.org.uk/tests...

labtestsonline.org.uk/tests...

labtestsonline.org.uk/tests...

labtestsonline.org.uk/tests...

AlwaysTiredxxx profile image
AlwaysTiredxxx in reply to Sleepybunny

Think my Dr is being quite thorough. Had autoimmune profile. Negative for IFA and PCA. Thyroid profile normal. Full blood profile all normal.

Dermatologist asked GP to do MRI Scan of spine re burning skin symptom. Also suggests I'm referred to rheumatologist. Re possible connective tissue disorder.

Only test that seems to have been missed is diabetes. Celiac test not done.

My B12 and ferritin has risen to normal levels after oral supplementation and think I do feel a bit more energetic.

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