B12 injections will alleviate pernicious anaemia symptoms

[Bitter1957]

My Father told me my Grandmother died from pernicious anaemia (or complications from this) in 1931. Dad said she had to drink liver smoothies. Obviously that wouldn’t work as she could not absorb it through her stomach. My father was diagnosed with pernicious anaemia and treated with B12 injections. I had Schillings test (about 25 years ago) and told I had pernicious anaemia and now receive B12 injections 3 monthly. Blood results show levels are within range. Is that the end of the story or can there be other issues even when in the “normal range”? As I have other health issues (bitter taste) that doctors are puzzled with.

[clivealive Forum Support]

Hi Bitter1957 How are you coping with the three monthly B12 schedule of injections?

Testing your serum B12 level is a waste of time once injections have begun.

I've had P.A since 1972 and still on cyanocobamalin injections and now have them every three weeks.

I wish you well

[Bitter1957 in reply to clivealive]

Thank you for your reply. My bitter taste does not improve after the 3 monthly injection. So maybe the taste problem is another issue then PA

[Sue-A in reply to clivealive]

Hi clivealive out of curiosity are you in the UK and having injections from the NHS?

I am in the UK and was having injections every 12 weeks then every 8 weeks, after a lot of discussion I have them every 7 weeks, I have seen significant improvement but I often feel unwell in the last week before my injection.

wishing you both well

[clivealive Forum Support in reply to Sue-A]

Yes I am in the UK Sue-A but I guess you are wondering about my three schedule of injections of cyanocobamalin B12

Cyano was the form of B12 I was started on every four weeks back in 1972 but when Hydroxocobamalin was introduced in the mid1980s I had an allergic reacrion to it so have continued with the cyano ever since.

I too suffered the return of neuropathy in the run up to my next injection and after a long battle with my "one size fits all" doctor now have them every three weeks.

Take care now.

[fbirder]

You can suffer symptoms even while having injections, even with a 'normal' B12.

Keep a diary of your symptoms. Do they get better in the weeks after an injection and worse in the weeks before? If so, ask the doc to increase the frequency to every two months (doc may not be aware that guidelines in the BNF have changed recently - ask them to check).

[Bitter1957 in reply to fbirder]

Thank you for your reply and information. My bitter taste doesn’t improve after injection so it seems PA may not be the cause of this problem/dilemma/curse ☹️

[Nackapan in reply to Bitter1957]

My daughter gets a bitter taste when her folate is low.

[Gambit62 Administrator]

high doses liver taken orally was the original treatment for PA and it did work for many patients before injections became a possibility and the standard treatment.

As others say the test results being in normal range if you have maintenance doses really doesn't mean anything as the injections themselves introduce a factor that makes the normal range completely meaningless. Although some old standards seem to have used blood tests to monitor treatment the current best practice in the UK doesn't recommend this. Many patients seem to need much higher levels of B12 after loading shots anyway.

As fbirder says - keep a diary to determine when symptoms return and try to get your GP to take that as the frequency with which you should receive maintenance doses.

[Bitter1957 in reply to Gambit62]

Thank you for your reply and information

[Sue-A in reply to Gambit62]

Keeping a diary and taking to the doctor certainly helped for me.

I am in the UK and was having injections every 12 weeks then every 8 weeks, after a lot of discussion I have them every 7 weeks, I have seen significant improvement but I often feel unwell in the last week before my injection. I am considering going back to the GP to ask for it to be given more often, but I need more evidence I think.

[Midnight_Voice]

A quick look on the web suggests all sorts of things, but likely GERD, or acid reflux.

medicalnewstoday.com/articl...

What do you think?

[Chaka]

Could the bitter taste be due to acid reflux.

[Nackapan]

My family member had a bitter taste when folate is low. Gone now on folic acid