Diagnosed with B-12 deficiency. Level... - Pernicious Anaemi...

Pernicious Anaemia Society
19,188 members13,273 posts

Diagnosed with B-12 deficiency. Levels normal but still experiencing symptoms. Sound familiar?

I've been diagnosed with a B-12 deficiency. However, my levels are all normal but I'm still experiencing the symptoms. My GP won't prescribe more frequent injections as levels aren't low. Any advice?

11 Replies
oldestnewest

Was the blood test done whilst you having injections? If so a waste of time. Should go by symptoms once treatment started

1 like
Reply

I've been experiencing many of the symptoms associated with B-12 deficiency. Yes. However, my last blood test was taken just before I was due an injection, towards the end of the three months.

Reply

An awful lot of people are in the same boat. In a survey carried out by the PAS and published in the British Journal of Nursing, 64% of patients said that they were not satisfied with their treatment. 10% resorted to self-injection.

I would suggest that you ask your doctor to check the entry for hydroxocobalamin in the online BNF (British National Formulary) as the recommendations were changed in January from once every 3 months to once every 2 to 3 months. So there's nothing to stop your doc from increasing the frequency of your injections.

2 likes
Reply

Thankyou, for your comment.

Reply

I pay privately for injections and others self inject. I was told I don’t need them and it would make ‘no difference to how I felt’. Well after 6 weekly injections I have gone from sleeping 9-12 hours and needing a daily nap, running out of energy by lunchtime if I was lucky to sleeping 7-8 hours and waking up before my alarm. I finally feel awake for the first time in maybe 20 years. It’s ridiculous.

1 like
Reply

Hi , do you mean 6 x 1x week injections, or 1 injection every 6 weeks 😊???

Reply

I’ve had 1 every 7 days for 1 1/2 months, so 6 so far.

Reply

Ok Thankyou

Reply

I know that many people have turned to self-medicating for the lack of treatment available. It's tempting but I can't find the confidence to try it. Especially as injections can only be prescribed in the UK.

It was awful you were told that. There is so much stigma surrounding B12 deficiency.

I agree with you. However, I am glad you are now more stabilised in your condition.

Reply

I guess it depends on how desperate you are. I wasn’t really living a life, I was just trying to stay awake. The b12 used by private clinics are the same as used by the nhs. The clinic staff are all ex nhs staff. There is no risk in my eyes.

1 like
Reply

Hi, I'm exactly the same, was given 6 loading doses then had a blood test after 3 months which was normal...

After 2 further visits, I decided to pay privately as didn't have the energy to fight the NHS as Dr was saying I was just depressed... Hmmmm funny that as after paying privately I felt a lot better.. Too many experiences like this I feel....

2 likes
Reply

You may also like...