Has anyone got a vitamin b12 deficiency? - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,337 members10,533 posts

Has anyone got a vitamin b12 deficiency?

11 Replies

Hi Everyone, I was diagnosed with APS in December after having 2 miscarriages. Didn't take the news to well!! Been suffering from anxiety ever since. Last month I was told I have a vitamin B12 deficiency and I was wondering it is common thing with people with APS? My doctor isn't sure.

Read more about...
11 Replies
Storky profile image
Storky

Do you have extreme fatigue? I have FM/CFS too so my Consultant prescribed B12 injections which I do myself every 2 weeks.

SassyOne profile image
SassyOne

I have had low vitamin B but not low enough to require injections. I was just recently dx with APS so I can't say if it's related or not. Sorry to hear of your MC & anxiety. It's really a scary diagnosis being lifelong & with so many possible symptoms. I try not to think of it too much. I have had a lot of crazy symptoms this year, probably made worse by stress but at least it pushed for a diagnosis.

Hope you find this community as helpful & comforting as I have. It's nice to talk to someone who understands and has been through the same things. Hope someone has an answer for you.

Yes, it can be yet another autoimmune condition - pernicious anemia. Not quite as frightening as it sounds and management with regular treatment as HughesPatient says.

emmaj profile image
emmaj

I personally think there is a link between b vitamins and auto immune diseases - i know that recent esearch has shown up b12 to act against dementia and more research is going in to it - and funnily enough i read up on b vitamin deficiencies and took it to my gp with my symptoms and he dismissed it - then whilst pregnant for the fifth time and having heammorhaged with all the others my consultant suggested a high dose (5mg) folic acid tablet - and hey presto it is the only pregnancy i didnt bleed with??? More than just coincidence. My consultant said that you cant be easily tested for it as its not always a deficency as such but that your body isnt 'processing' the vitamins and only two centres in the country can test it and it has to be tested within two hoursof it being taken for this specific test. I aint no doctor and i dont know if the b vitamins not being processed cause these conditions, which i think couldbe very likely - or if the condition (hughes etc...) cause the unsuccessful processing. B Vitamins and folic acid is the major building blocks to all our organs, and if theren not being built/supplied then who knows.... The placenta is the fastest growing organ which is why women have to take it during pregnancy ut any other time who knows what happens if we arent having these essential vitamins. Sorry to waffle all - i cant get to shorten my sentences somehow - very boring read for some but i feel quite strong on this point .......... xx

paddyandlin profile image
paddyandlin

KB2204 Welcome to the group we all here to help so please if you feel the need to as questions, rant, support we are here to help

Paddy

pumpkincake profile image
pumpkincake

Hi...

I have Pernicious Anemia...which is an autoimmune B 12 Deficiency. an antibody that attacked the intrinsic factor. Intrinsic factor is how the body absorbs B-12. I felt terrible for the longest time years ago. Found then it was Pernicious Anemia. I get B12 injections every month..take folic acid, b-6 and iron. I have had a couple blood transfusions when I had iron deficient anemia along with Pernicious Anemia, The most important thing (I think) is to stay on top of this as the untreated symptoms can lead to huge problems. But as Hughes Patient and KateH stated...it is quite a simple fix.

If you do need B12...be sure to be regular with it to best help yourself!!!

Good Luck!

Annegrethe profile image
Annegrethe

Hi

I have Hughes and pernicious anemia too.

Annegrethe

GinaD profile image
GinaD

I had a minor B deficiency, as well as anemia and osteopenia. They all went away on a gluten-free diet. Turns out I have Celiac. I had never thought that my flatulence problems deserved a discussion with my doctor. Boy was I wrong there. But after you've had DVTs, strokes, etc. a little gas does not seem worth mentioning.

Thanks for all your replys. Only on tablets at the moment and getting tested again at the end of the month so see what happens. Thanks again x

beckyb profile image
beckyb

Hi i have B12 and Folic acid deficiency i do not have celiac ( they are known linked) i get B12 injections every 8 weeks and folic acid tablets everyday

Helene profile image
Helene

Hello, I have B12 and Folate deficiency, have been on injections and taken Folic Acid for the last 8 years. I don't have pernicious anemia though, my anemia is linked to poor uptake in the gut due to one of my many conditions, Ehlers-Danlos Syndrome. I also have APS.

You may also like...

Vitamin D deficiency.

think my optimal vitamin D levels should be having APS? I have read that low vitamin D can also...

Anyone IgA Deficient with APS? Sarcoidosis APS

(late teens) has had IgA Deficiency since toddlerhood, and recently has suffered severe headaches...

Has anyone experienced pain along with pins and needles sensation?

I have pain in upper arm and tingling/numbness in hand and fingertips, its not a blood clot and my...

B12 Deficiency

Firstly I have it myself and due well on regular injections, however it is very poorly diagnosed...

Someone please help me!! Just got off phone with a neurologist who has ran every test under the moon because of my slurred speech and

a blood test confirmed, I have APS. That I do not have APS because I have a unremarable MRI.Somebody