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Does anyone understand about B12 deficiency. Aibu about this doctor?

(53 Posts)
Rufusbear Mon 12-Mar-18 15:12:15

Last year I was tested and diagnosed with very low B12, vitamin D, low folic etc and was feeling really rotten.
It had been picked up before but not treated. I was given loading doses and then three monthly jabs of B12 and tablets for the others.
Because I had neuro symptoms I have been put on 8 week jabs and tablets.

Saw doctor today for a well known related issue and was told I didn't have a B12 deficiency because b12 was stored in the body and as I was having injections I was not deficient of it therefore couldn't have symptoms of it.

Aibu to not agree with this and think it's like telling someone with diabetes that when they take their insulin they aren't diabetic as insulin is in their body?

Queenoftheblitz Mon 12-Mar-18 15:20:08

B12 deficiency is reversible which i think is what your gp is saying.
Poor diet usually causes it along with excess alcohol. Neurologival damage can be permanent.
I had the deficiency a year ago and found i couldn't walk un a straight line. I've been taking high doses ever since.
I have monthly blood tests for RA and if i was low in B12 again it would show.
I'm not sure what is confusing you?

Worried67202 Mon 12-Mar-18 15:26:59

The most common reason for b12 deficiency is Pernicious Anaemia a lifelong autoimmune condition. Diet an alcohol account for a very small amount of people diagnosed with b12 deficiency.

OP - I feel your frustrations, Pernicious Anaemia is not very well understood and often wrongly treated by specialists as well as GP’s. I’ve learnt to just get my regular injections (my GP agreed to monthly injections) and keep my mouth shut when another GP/nurse questions it. Not a helpful but I used to get myself worked up arguing with them and never got anywhere!

Rufusbear Mon 12-Mar-18 15:28:34

Thank you.

I am confused because I have just been put on more regular injections of B12 and Co factor medicine because towards end of the three months I start feeling rubbish with the same symptoms again but the new doctor was saying it's not possible to be deficient anymore.

If I don't have the deficiency anymore then why am I still experiencing symptoms and having 8 weekly injections and daily tablets.

Queenoftheblitz Mon 12-Mar-18 15:39:26

Op do you have pernicious anaemia? It does sound like you still have a deficiency. You need to ask your doctor these questions.

MereDintofPandiculation Mon 12-Mar-18 15:44:53

B12 deficiency is a result not a disease. So I think he's saying that you're not B12 deficient at this point because you've had your levels tanked up with injections. But whatever is causing your low B12 is presumably still there.

In terms of your analogy, he's saying that your B12 levels will be adequate (because of the injections) not that the underlying cause has disappeared.

Fintress Mon 12-Mar-18 15:46:18

Maybe make an appointment with a different doctor in the practice if possible. I was diagnosed with pernicious anaemia years ago and started off on 3 monthly injections but started experiencing symptoms around the 8 week mark (utterly exhausted and tingling in the ends of my fingers) so they upped my injections to 8 weekly. If for any reason I go over the 8 weeks, I'm floored.

MereDintofPandiculation Mon 12-Mar-18 15:46:18

But yes, if you are still having symptoms, you need to get the cause for this understood (whether you do in fact have some deficiency or whetehr it's for some other reason)

Worried67202 Mon 12-Mar-18 15:50:03

My understanding from the Pernicious Anaemia Society (look at their website it’s quite helpful). Is that although your blood may be flooded with b12 (giving a high reading on blood tests) the actual amount of b12 that is ‘active’ and useable by the body could be low (the blood test doesn’t differentiate between the active and inactive b12) hence giving you a reoccurrence of symptoms early.

CuriousaboutSamphire Mon 12-Mar-18 15:55:34

I too find that understanding can be quite limited or set in stone.

Fortunately my diagnosing GP was clued up and took time to talk me through the basics.

I find stress means I need B12 injections more often. Winter too. Cold, too little and too much exercise, certain foods, sometimes alcohol, just stuff, any stuff, but nothing consistently. It all just muddles along and I work out what it is that is flooring me and stop doing it, hopefully in time to make a difference. So I am likely to make an appointment any time after 8 weeks and regularly go at 11 weeks. I do also have CFS (possibly full on ME) which complicates things.

Every now and then I get a practice nurse who tells me I am too early, which can cause some heated arguments if my GP is not available to rubber stamp the procedure. This shouldn't be necessary as there is no consensus on how much/little intervention is needed, just a guideline!

Have you been told what underlies your B12 deficiency?
Can you change doctors? Tell your practice manager that the one you have confuses you and seems unsympathetic to your plight.

Rufusbear Mon 12-Mar-18 16:11:13

Thank you that all makes way more sense that the doctors did. They weren't up for answering questions really. Nope I have never been told what has caused the B12 issues. I had intrinsic tests which showed negative but I have been told that they aren't reliable.
Since then I've just been on jabs.

CuriousaboutSamphire Mon 12-Mar-18 16:16:51

Well, have fun getting the practice to bring you up to date with your diagnosis, treatment an prognosis. Start with the GP, then the Practice Manager and, if you feel you need more help or information, don't hesitate to contact your local PALS

www.nhs.uk/Service-Search/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363

Best of luck getting it all sorted

agedknees Mon 12-Mar-18 16:18:12

Long term usage of some medications ie metformin can cause vit b12 deficiency.

Bonkerz Mon 12-Mar-18 16:22:41

I have PA diagnosed 2 years ago. Started on injections after 3 months of tablets that didn't absorb. Had 6 loading doses then was given every 8 weeks.
I have nerve damage in my hands and feet and also have large red blood cells which hasn't gone away.
I now self inject weekly. I buy the b12 from Germany and find I'm so much better. I also pay for 'active' b12 tests which cost £35 every 6 months. It's usually around a third of what my blood level b12 is so my body struggles to convert.

ghostyslovesheets Mon 12-Mar-18 16:23:53

sadly NHS protocols dictate that the standard treatment is 12 weekly - I get bad symptoms from about 9 weeks but struggle through - it's to do with how they test - you can pay privately to have is assessed

technically he is right but medically we all different and it's active B12 that's more accurate a predictor www.active-b12.com/laboratory-diagnosis-of-vitamin-b12-deficiency/

I have lots of auto immune stuff but this is the one that floors me totally - much sympathy

ghostyslovesheets Mon 12-Mar-18 16:24:59

Bonkerz where do you get the £35 test I'd be very interested in that

Abra1de Mon 12-Mar-18 16:27:45

Can you top yourself up with a Boost sublingual b12 spray?

Several of us on MN use them. I get them from Amazon.

mummyoftvef Mon 12-Mar-18 16:28:08

I have B12 injections every 3 months I was told I would need them for the rest of my life, I've not had any more blood test to check the levels tho.

FittonTower Mon 12-Mar-18 16:31:15

I had B12 deficiency and low folate etc last year. I had the injections and then went back 3 months after my last injection and they re-tested. My B12 was still normal. Apparently its sonething that happens occasionally and then it's all normal again. If my B12 had started dipping again they'd have looked harder for a reason- i was initially tested for pernicious aneamia and for ceoliacs and they were all normal and fine.
Did they do any tests for why it was low? Or tell you to come back for re-testing?

Rufusbear Mon 12-Mar-18 16:31:33

Thank you I have no idea if I have pernicious anemia or not :s

Abra1de Mon 12-Mar-18 16:34:05

betteryou.com/boost-b12-oral-spray

Here you are.

Rufusbear Mon 12-Mar-18 16:35:58

Nope only retest I have had done is for folate and they retested b12 at same time because she said she couldn't separate the test or something.

They tested for intrinsic value initially.

That is it.

Rufusbear Mon 12-Mar-18 16:36:39

Thank you will look at the spray, much appreciated.

dubdurbs Mon 12-Mar-18 16:37:10

Are you taking any other medication OP? Certain drugs can affect the absorption of B12, for example Omeprazole for acid reflux.

Dungeondragon15 Mon 12-Mar-18 16:39:20

It's most likely to be caused by pernicious anaemia but I think you need to find out for sure. When did you last have an injection? A friend of mine has pernicious anaemia and I know she starts getting symptoms a week or so before the next injection.

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