Here’s a question

I have recently been confirmed with p.a via an I.F test.

I was originally told after an MMA test I had Functional b12 Deficiency where the b12 wasn’t getting to the cells despite high levels in the blood.

Am I correct thinking now I still have functional deficiency along with the P.A.I know it’s probably a daft question but I’d like to get it straight in my head.I still seem to need very high levels of b12 and when I try to reduce from every other day I get symptomatic again very quickly then when I increase frequency again I get shocking pins and needles in my fingers and toes, just for that first couple of hours after injecting.I definately feel better in so many ways than when I first started.opinions welcome please xx

[fbirder]

When was your MMA test in relation to your B12 injections?

Did they test kidney and liver function?

[Hidden in reply to fbirder]

Good morning fbirder.I had the MMA test done before I ever had b12 injections,medichecks suggested I did it after I had my bloods tested with them.

Yes I’ve had liver and kidney testing done ,the liver one I also had a private fibroscan done in London because of concerns and it came back excellent.bloods say my kidney functions is ok and I’ve also had numerous Ultrasound scans but because I’m still making stones,I had a new one appear in less than 12 months the biggest of them at 8mm, my consultant wants a 24 hour urinary calcium test done to check for hypercalciura as my brother also suffers from body making kidney stones.

Thank you for responding

[Narwhal10 in reply to Hidden]

Hi Thrones,

Sorry to hear you are having a difficult time. I’m clueless with regards to P.A. and functional Vitamin B12 deficiency diagnosis.

May I ask how long you have been having injections for ? (either self injections or by health professional) how long have you had symptoms for ? It’s good that you are feeling better.

With regards to your B12 regime, it’s a case of weighing up the benefits over the risks. So, at the moment, I gather you need to inject every other day but you experience painful pins and needles for a couple of hours post injection. This may be more preferable than having less frequent injections where you have additional symptoms ??

[Nackapan]

I thought PA was different to functional b12 deficiency.

Same result in symptoms but different reason for not reaching the cells.

As in functional b12 deficiency your b12 blood tests are within range or high

As with PA blood tests show low b12 in your blood

The intrinsic factor test seems to give different results at different times as stated by so many on here. Even Martyn Hooper had 2 negative and one positive. Wonder what a 4th would say?

Its like the present problem with testing antibodies for covid19

A swab done in the first few days can be positive confirming the diagnosis. . An antibody test on the same person later can be negative ?

The swab test being the most reliable it appears . Who knows .....addles the brain

[Hidden in reply to Nackapan]

My brain is well addled just now Nackapan lol.my understanding was that the MMA Indicated high serum b12 but not getting into my cells and the consultant I had then said in his report to gp I had functional b12 deficiency after going through all the blood tests reports and MMA results I sent him.I then decided to have my I.F checked so stopped injecting for a few weeks as advised and my results came back positive for p.a.

Ive been self injecting since my loading doses so around March/April time,I lose track sometimes lol.If I keep to the every other day regime the pins and needles stop but if I try to extend the frequency ,purely because I hate doing the injections,then the first couple of injections I have the pins and needles back again then it stops when I’m topped up again.X

[Nackapan in reply to Hidden]

Oh its so

difficult to fathom. I remember you at one point was aiming for monthly. I was too. I've never lasted more than 3 weeks and that was only a few times.

I had a bad reaction to my b12 I jection on Tuesday. I used the prescribed stuff a different brand than they had dispensed before. In March i had a bad reaction but as usual the Gp thought it me!! What I was surprised by though in my notes the brand used was not noted. Just the expiry and batch code The pharmacy had no idea either.ive since recorded the brand myself every time .

As you probably saw on my post there was one extra additive which does make it different to the 3 other sorts I use regularly.

As I write a diary the reaction was the same. Horrid infact. So now I've returned the 9 ampoules to the pharmacy asking for a receipt (gp needs proof) so it can be prescribed again and put on my notes not to use that particular one. I imagine will have to pay again.

What a hoo ha . Of course I'm not trying it a third time to make sure as was suggested!! The pharmacist said it certainly was plausible I personally cant tolerate that additive. Maybe to eat but not injected!!

Nothing it appears is straightforward. I wonder now when severely ill at the start it was exasperated every time I had that generic brand?? As I was so poorly after most injections. My daughter has never had the reactions I've had so not to scare anyone . She has had all the NHS genetic brands they use.

Goes to show we are all different and have to be our own detectives. What a job though.

Good you ploughing on with investigations. T C

[Hidden in reply to Nackapan]

That’s awful for you Nackapan I was the same with the fillers used in hrt and of course all the gps and consultants will say no it cant be but I know it is like you do,we seem to be so sensitive to many things that other people take in their stride,that seems to be one of the penalties of being b12 deficient and we react so quickly no one seems to believe it.

I hope your feeling better now you have so much to contend with I hate when I read things are not going well for you.take care xx

[Narwhal10 in reply to Hidden]

Hi Thrones,

I’m just reading What you need to know about P.A. and vitamin B12 deficiency (M Hooper) and p109 - a positive IFAB result it’s 95 per cent correct, so you are more than likely to have P.A (aka autoimmune meta plastic atrophic gastritis) rather than functional Vitamin B12 deficiency. Have you passed this information to GP ?

You’ve been injecting 6 months now and as much as you hate alternate day injections, what do you think about checking maybe once a month ? (I’m plucking a time scale here - only you can decide from symptoms and treatment) and seeing how you are.

[Hidden in reply to Narwhal10]

Hi Narwhal10.yes thank you I have advised gp and it’s been recorded on my notes thankfully.

I have been injecting every other day and sadly when I try and extend this my symptoms really ramp up again,twice recently I went a week between injections and by the time I was at the third week my husband stepped in and said please stop now your getting worse each week your balance is bad your memory’s bad and we won’t talk about your temperament lol my conversational skills take a dive I can’t find the word again mid sentence and I get so breathless so right now I’m back at every second day ,I get fed up with it but get no support from gp ive discussed with nurse but she’s pretty useless and just says never mind hopefully you’ll feel better soon???

I have a good consultant I’m working with just now on a private basis and I feel I’m making progress but the gps are so uncooperative even with a consultants requests it’s ridiculous. Many thanks for suggestions x

[Narwhal10 in reply to Hidden]

Thrones,

Sending you a virtual hug. 🤗 Sorry to hear GP and nurse aren’t helpful, thank goodness for private consultant and husband. Ok, so going a week is too long for you, at the moment, how about trying a different approach ? It’s important to maintain optimal health. X

[Hidden in reply to Narwhal10]

I’m intrigued now lol what different approach do you mean bearing in mind I can’t get past 3 days without symtoms recurring.x

[Narwhal10 in reply to Hidden]

Maybe emailing/ writing to your private consultant (??neuro) and asking for their opinion and recommendation.

So you have been SI for 6 months every other day but wish to decrease your treatment as you struggle with this current regime. You would be grateful if this plan of care/treatment be reviewed. However, you become symptomatic with x, y, z after 3 days. Please advise.

[Hidden in reply to Narwhal10]

Good suggestions but a complete waste of time I’m afraid they have close to zilch knowledge lol.

There’s no chance of me ever telling a gp that I s.i it’s like giving them a loaded gun and not something I’ll ever do.

I'll stick with my friends here for now as their help and advice has been second to none.

Thank you for your input though x

[Gambit62 Administrator]

PA and functional B12 are very different things - exactly what triggers functional B12 deficiency in some individuals and not in others isn't understood - one of the circumstances that seems to be instrumental in triggering it is raised B12 levels, eg through injections or supplementation, or liver and kidney conditions.

Functional B12 deficiency seems to be about the efficiency of transfer from blood to cell - so raising levels higher is an effective way of treating it.

[Hidden in reply to Gambit62]

Yes I definately feel much better keeping up the higher levels as soon as I try to reduce I feel symptomatic again like I’m right back at square one so looks like no easy answer to what I’m asking so I’ll just have to accept my diagnosis gratefully,at least I have one confirmed,and just plod away.im at least getting some answers to the other stuff with the professors help,still waiting on gp getting back to me to arrange further testing as requested yet again by the Professor,not impressed.x

Thanks Gambit62 X