B12 Deficiency - no treatment yet :(

[Greenandpink]

Hi all. I’m wondering if I can get some advice!

A couple of weeks ago now I found out I have really low B12 and serum folate levels after getting a blood test. When I spoke to the GP, she said that as my blood count was normal she’s unsure if I have an anaemia or how to treat me. Could I have PA with normal blood count?

I’ve had really bad symptoms for the last couple of years with feeling lightheaded, nauseous, fatigued (even at times suffering neurological symptoms to the point where I cannot get my words out and my face goes numb almost like a stoke). Now I’ve finally found out what was causing all of this I was expecting it to be dealt with quickly, however I still haven’t heard back from my GP about how best she would like to treat me. She had mentioned the injections but wasn’t sure the surgery was giving them out right now which I’ve seen is a massive problem at the moment.

I eat very well and work in the largest dietetics department in the UK meaning I have all the nutritional knowledge and support I could need, so know it is not a dietary related deficiency.

I take lansoprazole due to a hiatus hernia and I know long-term use of these drugs can lead to B12 deficiency - but she didn’t suggest this herself and I don’t want to seem like I’m pushing anything as not an expert.

I’d really like some advice on what kind of treatment I should be looking for. I hate being pushy with doctors and have so often been dismissed I give up very easily, but these symptoms effect me daily and I would like to get some help. I was optimistic when I got my test results because I finally had an answer - but now I know the risks of leaving these deficiencies untreated it’s incredibly frustrating I haven’t been offered any treatment. I’m going to call my docs again next week, but wanted to know if there is any kind of stance I should be taking going into this so I get treated effectively?

Thanks in advance for any help!!

[Greenandpink]

Haha I actually wrote this out just before I went to bed myself! Thank you so much.

I have my results so have included the relevant info:

B12: 156 ng/l

Serum folate: 2.5 ug/l

From my full blood count, everything is in the normal range. I will include the white and red blood cell results but let me know if anything else would be useful.

Total white blood cell count: 5.4 10*9/L

haemoglobin estimation: 150 g/L

[Gambit62 Administrator]

Pernicious anaemia is a bit of a misnomer - it is actually an auto-immune disorder of the gut that attacks the mechanism by which we absorb most of our B12 from food, leading to a B12 deficency. One of the results of both folate and B12 deficiency is a specific type of anaemia in which red blood cells are larger and rounder than normal. It can also affect absorption of folate and the BCSH standards on cobalamin and folate disorders are clear that in a folate deificiency that isn't dietary B12 deficiency is likely to occur as well.

About 20% of patients with a B12 deficiency present without anaemia.

Your GP needs to deal with why you are B12/folate deficient and not get hung up on the absence of anaemia. The most likely cause of B12 deficiency is Pernicious anaemia.

You could suggest that your GP takes a look at the BCSH standards which can be found here

onlinelibrary.wiley.com/doi...

there have been some minor revisions since this was published around frequency of injections - 2-3 months for people who don't have neurological symptoms.

They might also find it useful to take a look at the area of the PAS website specifically aimed at helping medical professionals improve the diagnosis and treatment of PA

pernicious-anaemia-society....

[Greenandpink in reply to Gambit62]

Oh no way! That’s super interesting - I never would have known that, so thank you. I will have to be more assertive with my GP on that one then and make sure I get those injections.

[fbirder]

Tell you doctor to look at the very first entry for hydroxocobalamin (B12) in the British National Formulary. It says -

Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency

By intramuscular injection

For Adult

1 mg every 2–3 months.

So it doesn't matter if you have anaemia or not. You should be getting injections to prevent you from getting anaemia.

[marray]

Hi just had my injection this morning at Health Centre - no problem I feel very lucky Live in Scotland

[Janma123 in reply to marray]

We are in Scotland and hubby was refused his last week and given tablets!

[Xena2202]

Ive never had low hemoglobin or anything unusual in my CBC, yet had very bad B-12 symptoms including neurological ones. And tested positive for the antibodies. I would push your doctor for injections, like fbirder said to prevent anemia is a valid reason and if they don’t understand another doctor will. As for the folate, I would recommend methyl folate, which can be found in vitamin stores here in the US, or online. Not terribly expensive, I take it myself. it’s unusual to have low folate and it could be because you cannot convert folic acid. Taking methylfolate will guarantee utilization.