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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

52 replies

Rufusbear · 12/03/2018 15:12

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?

OP posts:
getdownshep · 12/03/2018 16:47

I have these injections every twelve weeks.
I definitely need them every eight weeks though, I ache all over and feel absolutely exhausted at the moment.
I haven't been retested either but I can feel the difference a few days after the injection so I assume I still need them

AnneLovesGilbert · 12/03/2018 16:50

I have mine every 10 weeks and never have that terrible drop towards the end. I asked and was expecting a fight but the GP listened to what I said and agreed. It really has made a difference.

LimitsLie · 12/03/2018 17:00

I have MS. It's been flagged I have low Vit D and B12. I take Healthy origins 10,000IU D3 and 5000mg Solgar sublingual tabs every day. that keeps my levels good. I buy on iherb, it's a lot cheaper than shops. If you have any excess b12 you'll just wee it out and you'd need to be taking 40K IU a day of D3 to overdose.

Dungeondragon15 · 12/03/2018 17:03

I have MS. It's been flagged I have low Vit D and B12.

Did they do a blood test for the vitamin D?

getdownshep · 12/03/2018 17:04

I've just rung my surgery and I will have to make an appointment to see a GP to discuss increasing the frequency of my injections.
I'm going to get the spray mentioned too

LimitsLie · 12/03/2018 17:05

Yes. My doctor is fantastic, he regularly checks every level of everything every few months.

Dungeondragon15 · 12/03/2018 17:06

Yes. My doctor is fantastic, he regularly checks every level of everything every few months.

Do you live in the UK?

LimitsLie · 12/03/2018 17:10

No Spain. NHS though.

Ollivander84 · 12/03/2018 17:16

Sounds like a doctor I met that said "you don't have neutropenia because your neutrophils are fine"
Yes, that's why I inject a bone marrow stimulant once a week and see haematology every 12 weeks... if I don't take the meds, my neutrophils aren't fine!

lostherenow · 12/03/2018 17:25

I think its very much luck whether you get a Dr who is any good or in fact has no clue what you are talking about at all.

Im on 3 monthly injections. They decided based on what I told them that I cant absorb the B12 so I'm on injections for life without a proper diagnosis - the PA test came back negative, but I know pretty much all tests around B12 are unreliable. I personally think its the effect of being on Omeprazol for 6 months when pregnant with DS2 as the time scale fits. Im thinking of paying for private more accurate tests of active B12 but only one I could find was over £100 so its a lot and Im not sure my doctors would take any notice of it anyway. eg they only gave me 4 once a week loading doses and aren't interested in any neurological symptoms.

I was once told I was 'needle phobic' and certainly self injection is not an option and if I cant absorb it then tablets and sprays etc are pointless aren't they? I need to sort it before going back to work as I dont think anyone will be very impressed if I end up having a couple of weeks every 3 months where Im exhausted and cant finish my sentences.

LimitsLie · 12/03/2018 17:31

With the sublingual B12 it's absorbed under your tongue, you could try that.

TenancyTroublesAgain · 12/03/2018 17:33

My levels were either borderline or actually low depending on which surgery you ask.. and the GP told me it wasn't worth even taking supplements. Not injections... Supplements Hmm

LimitsLie · 12/03/2018 17:39

With 5000mg and 10,000IU a day of B12 and D3, my levels are in the normal range. It's takes a lot to for me to get into normal.

Ninabean17 · 12/03/2018 17:45

I have coeliac disease which has left my body unable to absorb b12 from food and drink, so I have to have the jabs every 12 weeks for the rest of my life. Have my levels checked about once a year. I wish I could have the tablets, the jabs are truly horrible.

DontbeaDickaboutit · 12/03/2018 19:14

If you have pernicious anaemia can you still donate blood does anyone know?

Abra1de · 12/03/2018 20:23

The spray into your mouth doesn’t go through the digestive system, which is why i use it. I find it easier than sublingual tablets.

CuriousaboutSamphire · 13/03/2018 07:39

No, the blood service won't take your blood.

Boredoftryingusernames · 13/03/2018 08:28

I think you should see another GP and push to find out what your underlying problem is, unless you are a very strict vegan there is likely to be some reason your aren't absorbing the B12 in your diet.
I just want to say I'm a vet, not a doctor (!), there has recently been an oral supplement of B12 released for dogs and cats that has been shown to be as effective as the injections in raising B12 levels, even in animals with bowel issues (most common cause of low B12 in pets). This development has come as there is lots of evidence in people that if you give large enough amounts of B12 there will be absorption from the bowel (even if low in IF) as it can diffuse across the bowel wall lower down.
In Canada an Sweden it appears in people they are usually given oral B12 rather than injections. A few papers I have read suggest it is lack of knowledge of this by the medical profession and the fact the UK doesn't have higher doses on prescription making it less common here.
If you found an oral supplement at a higher dose worked (obviously under advise from your doctor) you could avoid the injections and keep your levels more stable. What dose are you taking now?
I still think you need to ask them to look further into what is going on to cause your issue though.
Hope that makes sense!

Original poster
Rufusbear · 13/03/2018 09:38

Thanks all
Bored thank you that's interested. At the moment I am on
8 weekly injections
Daily 1000 Vitamin B12
Weekly 50,000 B3
Daily 5mg folic

I'm so exhausted and in pain I want to cry.

OP posts:
Original poster
Rufusbear · 13/03/2018 09:39

*interesting

OP posts:
MissDuke · 13/03/2018 09:44

Op can I ask what pain you are experiencing?

Have you been tested for coeliac disease?

Original poster
Rufusbear · 13/03/2018 10:20

Mostly joint pain, muscle pain, spasms,

I do have stomach problems too.

I'm under rheumatology as of this month.
Being tested for coeliac

OP posts:
FailingMotherhood · 13/03/2018 10:37

My dad (and coincidentally my father in law) both have pernicious anaemia. It stops your body from being able to absorb B12, so diet doesn't matter. If untreated, it causes nerve and neurological issues.

Both are treated with EPO injections. My FIL had to battle to be diagnosed, then had to battle for treatment - EPO is expensive, so his GP and the hospital that did eventually diagnose him were arguing over whose budget it was going to come out from.

FailingMotherhood · 13/03/2018 10:39

OP, I'd really push to be checked for pernicious anemia, your symptoms sound very familiar! It usually affects older gents (my FIL was in his 50s when he was diagnosed, and was told he was young!), so it might be it's being overlooked as a possibility.

Original poster
Rufusbear · 13/03/2018 10:51

Is pernicious anemia test not what the intrinsic factor test was please.

OP posts: