Have you ever been diagnosed with a Vit B12 ... - Vasculitis UK

Vasculitis UK

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Have you ever been diagnosed with a Vit B12 deficiency? Please leave any appropriate comments.

Suzym2u profile imageSuzym2uModeratorVasculitis UK115 Voters

Please select all that apply:

23 Replies
Sima1952 profile image
Sima1952

When l was first diagnosed, l was given B12 injections, in the hope, l believe, to ward of further sight loss.

missgobby profile image
missgobby in reply to Sima1952

That's interesting ever since I was diagnosed my eye sight in my left eye has got to the stage if my right eye is closed I can see anything apart from faint shadows

missgobby profile image
missgobby

I don't ever recall it being checked

Sima1952 profile image
Sima1952 in reply to missgobby

Hi Miss Gobby, which hospital are you under, l'm under Addenbrooke's and my Ophthalmologist is a Dr.Meyer; he is brilliant. If you're not at Adden' then see if you can get referred tro Moorfields, if it's not to far away from you that is. Eyes are so important and it's not until you start to loose your vision that you realise just how important they are.

amms43 profile image
amms43

I am not aware that I have ever been tested. I have never heard that I have.

nicholls profile image
nicholls

My B12 is on the very low side of normal i.e. 1 point. They are considering giving me something to see if it helps.

in reply to nicholls

I would push for B12 injections. They won't do you any harm but they have the potential to do a lot of good!

AngharadJ5 profile image
AngharadJ5

I was diagnosed with Pernicious Anaemia in April 2015 and started on B12 injections and given folic acid tablets after going back and forth to my doctors with various problems. Eventually diagnosed with Tak in Oct/Nov 2015.

maisie5 profile image
maisie5

I have pernicious anemia. My body ceased to make Vitamin B12 7/8 years ago. Every organ in the body needs B12 to survive. Unfortunately several common medicines destroy the part of the gut which produce B12. Getting diagnosed is not easy but if you have undiagnosed p.a you become ill over a long period of time as your B12 reserves are used. I inject once a month to keep my B12 topped up. Read "Could it be B12?" For more info.

Patricia2015 profile image
Patricia2015

No, as a vegetarian without eating milkproducts and leaning to vegan I take b12 1000 microgram supplements (brand Solgar) a day.

StevenHolt profile image
StevenHolt

my wife was given some B12 injections last year, they picked up that it was low through her blood test that she still get every 3 months. She has been taking Azathioprine for the last 2 and a half years.

bowler profile image
bowler

I had borderline low B12 226 [range 200-900] I was given injections but the DR. told me to stop because of the skin rash it caused. I then ordered B12 sublinguals [ recommended on the B12 site, ] from Amazon and after several months my range shot up to over 2000 so I stopped taking them, however over the past 18 months I have noticed that my level has gradually come down and it's now 334 but still within range. If it gets any lower I will start taking them again. All my other iron levels were normal, except for ferritin which is always high, but I understand that inflammation can raise the ferritin ?

SuzyJaneG profile image
SuzyJaneG

My consultant arranged for me to have regular 3 monthly injections shortly after being diagnosed with GPA

alybill profile image
alybill

I had to ask my GP to test for vitamin deficiency. B12 vitamin diagnosed, given Three monthly injections and oral folic acid. Been on treatment for about three years, had CSS about eight years.

blackgolf profile image
blackgolf

Prior to my diagnosis of vasculitis I had b12 deficiency had to have injections every other day for a period of two weeks then monthly for three months then everything was fine not had it occur since x

AndrewT profile image
AndrewT

Dear Susan,

Correct me if I'm wrong, which I don't think I am, but unless you either don't have meat/dairy products-or have a problem with your digestion-then a Vitamin B12 (Cyanocobalamin, I think that is the right spelling) is unlikely. Vegans (strict 'no animal product at all') individuals can get this- though there are a couple of vegetable sources. I am therefore surprised at the results of this poll.

Please can you therefore enlighten me as to what might be happening here, as there is clearly a 'gap' in my knowledge- in this regard.

Very best wishes to John please.

Andrew

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to AndrewT

Some diagnosed with Vasculitis are tested for low Vit B12 and some are not. Low Vit B12 seems to be associated with some immune diseases. Some patients are unable to absorb Vit B12. Hope this explains a little Andrew.

Susan :-)

AndrewT profile image
AndrewT in reply to Suzym2u

Yes thank you Susan-a little 'gap' in my knowledge, has now been filled. Are there any more 'oddities' like this that I should know about?

Love to John please.

Andrew

bowler profile image
bowler in reply to AndrewT

The PAS site [ Pernicious Anaemia site ] was helpful for me

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to AndrewT

if any come up again Andrew we will let you know. :-) John says hello :-)

XR400DR profile image
XR400DR

Sorry, hit wrong answer. I do take folic acid.

Nell profile image
Nell

I have recently been advised that my B12 is a little low (138) and my GP says he will check it again in 6 weeks.

TRULYMADLYDEEPLY profile image
TRULYMADLYDEEPLY

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