Vitamin B12 or Penicious Anemia - Gluten Free Guerr...

Gluten Free Guerrillas
9,484 members3,856 posts

Vitamin B12 or Penicious Anemia

Hidden
Hidden

Hi all. I am wondering how many of us have been diagnosed with having either vitamin B12 deficiency or Pernicius Anemia.

A recent blood test has found that my B12 levels were very low and I an now on fortnightly injections.

roscoe

8 Replies
oldestnewest

This is how I was diagnosed as a coeliac after I went to give blood and they sent me to the Doc's who sent me to the hospoital who admitted me as an emergency because I was so anaemic.

Ten years ago I was diagnosed with microscopic colitis as the individual cells of my colon bleed. So I do not drink alcohol or take things like aspirin as they trigger bleeding and make me wake up in the night feeling like I've been kicked by a mule and I have to pass the blood that has built up in my colon.

For the last 3 years my iron levels have been normal as are my mineral and vitamin levels so I must be getting something right with my diet/lifestyle. And this is without any iron or vitamin supplements.

So its what is causing your anaemia that needs to be resolved or its like a merry go round. I also think that being a coeliac is far more complicated than we realise.

I hope you find the cause and get better soon.

Jerry

FionaGFG
FionaGFGAdministrator

Hi Roscoe

Unfortunately the auto-immune diseases do travel in pairs so e.g. thyroid +PA, Coeliac +PA etc. It is worth getting your doc to test your intrinsic factor. As sometimes people just have severe B12 deficiency (and as it's taken 7 yrs for you to feel well that's not surprising that you've not be absorbing things properly). Yet others have PA where they may lack the intrinsic factor to process B12 and so actually have the auto-immune disease pernicious anemia. For which they'll need regular injections for life. For example my mum has thyroid and pernicious anemia. In her it was only picked up after I pushed to get her tested for Coeliac Disease and they discovered she was so anemia and wasn't getting better on iron supplements. It is amazing how the auto-immune diseases and symptoms are still so poorly unstood by front line Doctors. Once you get to see a specialist things generally pick up. For ages they said her foggy headedness, pains in feet, unbalancedness, tiredness was depression. After a few B12 treatments she's come on leaps and bounds!

I'm sure we have some PA people in the group who'll join in and add their point of view too.

I had very low B12 when diagnosed, and had to have weekly injections for at least a year, then 2 weekly, then monthly, then 3 monthly for about 4-5 years.

I can't offer any advice on how to stop it, I'm afraid, but if it's disrupting your life, you can get your local district nurse to come to your work and adminster them to make it easier!

Good luck!

Irene
IreneAdministrator

Roscoe, I think you are very luck that you're getting fortnightly jabs. It does seem (due to cost?) that current medical thinking is that 3 mthly jabs are sufficient to maintain a reasonable B12 level in PA sufferers. Apparently in the 70's it was monthly and it's then stretched out. If you read any PA forums sufferers are all complaining about the length between jabs. Some are even going so far as to buy the vitamin injection in Europe and then get diabetic syringes and inject themselves! I'm on 3 mthly jabs but, since starting jabs following diagnoses last year, I have twice had to ask for 2mthly jab as the symptoms returned with a vengence. It appears there are many 'private docs' offering a fee paying service to top up PA sufferers and there's no consistency within the NHS as to what's offered from your GP. If you're diagnosed with PA then you are on B12 jabs for life and iron supplement.

Hidden
Hidden

Hi Irene

In Australia we have a system where if you are on a pension the PBS (Pharmaceutical Benefiets Scheme) kicks in. This means I get the injections for $5.80 for 3. My doctor bulk bills the government for my consults. So I get good treatment.

Irene
IreneAdministrator

Aha, that explains it. In the UK docs seem quite blaise about vitamins and what the impact that a decfiency can have on the body. I felt so unwell, no energy and unable to concentrate (which I put down to age!) that I took early retirement. Then I was diagnosed with B12, Iron and Vit D deficiencies and after treatment I really picked up. I'm not tha happy with the info that is provided when you are diagnosed. I hadn't heard of PA, didn't mean anything to me. Docs just say get your jabs and that's it. Seem to want to leave it to the health charities to provide further info. That's a whole other issue as far as I'm concerned as they vary so much. I've found most of my info on the web. Am now undergoing more tests as there are other implications for damage to stomach lining with PA. Good news is if the docs find me 'interesting' I'll be at the forefront of investigations :-)

know how you feel im now on three monthly vit b12 at least its down from once a month (just wish i felt some benifit)

Hidden
Hidden

same here.

You may also like...