B12 deficient newbie pondering PA testing

[longdistanceclaraDXB]

Hello all, I am newly diagnosed with b12 deficiency (112 pmol/l). Haven't had any other tests yet but am wondering about tests for PA now. As well as being newly diagnosed b12 deficient I am also newly vegan (since end of January) and that's the only reason I actually went to get tested.

Since finding out about my deficiency I've been reading like crazy. Already done 'could it be B12' and am now onto Martyn's book 'what you need to know about PA and B12 def.'

Reading the symptoms and looking back I actually suspect I may have been deficient for a good few years now and perhaps going vegan was just the tipping point. I read last night in Martyn's book that a healthy functioning person can go for a few years without consuming b12 before their stores are depleted because of the liver/bile (?) secreting/reabsorbing (?) small amounts of B12 into the system (I thought I'd highlighted the passage on my kindle but cannot for the life of me find it now so please excuse me sounding like a complete numpty!) so this gets me thinking that I should ask for PA testing and not assume that it's linked only to the veganism.

My doctor has been nigh on useless so far. Firstly he berated me for my choice of veganism based on the fact that it doesn't matter what I do, the animals still die and the planet is still doomed. Whatever! I didn't come for an ethical debate with him. I came to discuss my health. When he called to tell me my results and couldn't get hold of me he sent me a 5 word email stating 'test results - vit b12 deficient'. Total sum of! No info. No recommendations on treatment. No suggestion that I come in to discuss with him. After emailing him back he prescribed Neurobion tabs which contain only 200mcg of cyanocobalamin... took those for a couple of weeks whilst doing some reading up and saw no improvement in symptoms so have now 'prescribed' myself some methylcobalamin 5000mcg sublingual lozenges. Started off with 2 a day and now onto one a day. Some days I think I feel better and others not quite so sure.

I think its about a month ago now since i found out. Have been thinking about retesting maybe in another month or so and also testing for PA. How long before another serum b12 test do I need to stop supplementing. Will the supplementation (only b12 so far) I've already been taking skew any of the PA tests?

I also suspect my mum to be severely deficient too. She is now almost crippled with mystery pains that no one has ever gotten to the bottom of. She feels like they just think shes a hypochondriac as she's at the doctors practically every week and they just keep sending her away. I asked her to go get tested and she's already been fobbed off on the basis of her full blood count results only... sigh... So annoyed!

Oh and I should add that I don't live in the UK but am in Dubai, United Arab Emirates.

Thanks for reading. Any advice or experience greatly appreciated.

Claire

[fbirder]

It sounds like your doctor has heard the word 'vegan' and wiped all possibility of any other cause from that atrophied lump he calls a brain. It sounds as if your analysis - that the veganism was the tipping point sounds more likely.

There's no real point is stopping supplements just to get tested again. You know the levels were low and you need to find out why they were low.

Ideally you want to be tested for the two antibodies, anti-IF and anti-GPC (Intrinsic Factor and Gastric Parietal Cells). If either of those come up positive then that's a fair indication that you have PA and need proper treatment - injections for life.

[longdistanceclaraDXB in reply to fbirder]

Thanks for your input fbirder. I'll get onto the doc and see if I can get those tests sorted

[Sleepybunny]

Hi longdistanceclaraDXB,

I've written some detailed replies in the last few weeks. if you search for my posts hopefully there should be some useful info.

PAS (pernicious anaemia Society)

pernicious-anaemia-society....

44 (0)1656 769 717

The PAS are helpful and sympathetic and have members from around the world.

martynhooper.com/

b12deficiency.info/

[clivealive Forum Support]

Hi longdistanceclaraDXB I'm not a medically qualified person but having started supplementation any serum B12 test result will be skewed and would only be of use if it produced a really low reading.

Perhaps I'm daft in view of the fact that you are vegan but you must make sure that you keep your Folate level up as it is necessary to work with the B12.

I wish you well

[longdistanceclaraDXB in reply to clivealive]

Thanks clivealive. I shall look into supplementing folate too. Is it usual to get tested for folate levels too or do people just go for the IF and GPC tests to determine if PA or not?

[clivealive Forum Support in reply to longdistanceclaraDXB]

I can only say that I had both Serum B12 and Folate tests done together back in March by my now more "savvy" G.P. It would be good for you to know your Folate level whilst supplementing on B12