Megaloblastic Anemia

[Bonkerz]

3 years ago I was diagnosed as b12 deficient. One of the side effects of this was enlarged red blood cells.
My GP wants to stop my b12 injections as level over 2000 BUT I self inject at home.
She says my levels are now fine and yet I still have enlarged red blood cells which would suggest despite the high b12 reading I am still deficient and need treatment.
I'm exhausted with nerve damage and in pain a lot. How do I fight this?

Hi @Bonkerz Do you know what your B12 level was when you were diagnosed? Is there any chance that your deficiency was caused by poor diet or medication (ie for diabetes or stomach acid)? If your B12 was below range and not due to diet/medication that you are no longer taking, then treatment should be for life. Were you diagnosed with pernicious anaemia (positive intrinsic factor test)? If you are having B12 injections then NHS guidelines say that there is no pint in testing levels because they will always read high. If your symptoms haven't improved with regular B12 injections, however, there's a chance that there could be something else going on too...
It seems as though GPs around the country are taking patients off B12 injections, but they are not citing any change in research or rules to back this up. So frustrating!
If you have PA or other problems that stop you absorbing B12 you are not cured! Likely your levels will slowly drop back to below range again.
BI

My levels for b12 was 78 when I was diagnosed 3 years ago. Go put me on tablets for 3 months and level only rose to 98. I had loading doses and 12 weekly jabs for about 10 months. I started home injecting after a year and felt a lot better.
I did an active b12 test privately in May and level was 360 which is a good level but not good enough for repair. I only convert about a third of my serum level into active. My Gp doesn't understand the difference between serum and active b12 which is a battle in itself.
What I'm trying to get her to understand is that my enlarged red blood cells show I'm still aneamic and I want a referral to find out why. In my head this appears reasonable but the gp just says my b12 is fine so it doesn't matter about my red blood cells

How are your ferritin and folate levels? Folate needs to be good in order to process B12, ideally in top third of range. Folate deficiency anaemia has similar symptoms.

My levels are fine for iron and folic acid. I take a lot of supplements to help including potassium and magnesium and folic acid and vit D

Bonkers, I was in a similar situation that you in that I had a very high MCH value and had all the standard symptoms of b12 deficiency, but because my result came back at just under 400, they wouldn't hear that there was a problem. When I mentioned the MCH, they said that some people were just outside of scale and didn't mean there was anything wrong (I was massively outside). I tried to discuss the fact that the test is not always accurate and I should be tested for active b12, but by then, I had started self-injecting.

I have done so for two years now. Initially, I had to do three loading dose periods, but gradually, I was able to delay to the next injection. Nowadays, I just wait until the typical symptoms come back, which for me is a crashing fatigue very different to my normal ongoing tiredness, and being out of breath just walking.

A year later, I asked my MCH to be tested again, and it was still above normal, but had finally reduced (I had to very high results before and just after starting the injections). It's been a year since my last test and can only guess it's got better again,

I am happy self-medicating and I don't even mention it to my GP any longer. He isn't really interested as you can't do any damage with taking b12. I know he doesn't believe I have a problem though.

I guess I feel like I am fighting a losing battle. The gp just doesn't understand b12.
I was self injecting every other day but had to reduce due to finances (separated from husband) and have budgeted one every 3 weeks. The problem with this is my symptoms are coming back. I have have issues with my fingers being really swollen and painful now and I'm just miserable because I'm in pain.

I too originally found that I needed a lot at first. I felt better after the first loading period but it only lasted about 10 days. I did one injection every other day for a couple of weeks, then again about 3 weeks later, and then once a week until it became once a month and about once every 6 weeks. I now know exactly what I need it again.

Indeed, GPs are really not clued up and I am so grateful that I was able to buy the drug online. I assume you have done so too? I am no expert but I think it is probably better to give yourself more at first than trying to ration it.

Also, make sure your vit D levels are good. I wasn't worried about it at all as I'm out a lot, but to my big surprise, I was low on it too, not massively, but enough to make me feel worse with the two combined.