PA? Advice please

[Chalky1064]

Hi, after some advice please. I’m still slightly shocked after visiting the doctor yesterday. I’ve had pins and needles in my arms and fingers for a number of weeks and eventually was persuaded by my wife to go to the doctors. Anyway after having a blood test earlier in the week I was informed that my B12 levelled were very low (no I didn’t ask the levels as I was a)shocked and b) never heard of b12) and I needed to be loaded up ASAP. So from Monday I’ve got two weeks of injections. The more I read the more I worry. I’m not sure if I have PA. any advice much appreciated

[fbirder]

Are you a vegetarian/vegan? If you are then your B12 deficiency may be dietary. That means you'll probably be able to keep your levels high enough just by taking pills.

If you eat lots of meat/fish then it's something else?

Do you take PPIs (for stomach acid) or metformin (for diabetes)? If so, then these may have caused your problem and you need to chat with the doctor.

Have you had bariatric surgery (a stomach band for weight loss)?

Do you regularly abuse nitrous oxide?

If all the above are 'no' then you almost certainly do have Pernicious Anaemia.

The most important thing is to get the right treatment. This is described in the British National Formulary. Your doc will have access to an online version. This is the relevant page - bnf.nice.org.uk/drug/hydrox...

The relevant section is for people with neurological involvement (that's your pins and needles). Note that it says your loading injections should be - "once daily on alternate days until no further improvement", not as your doc seems to have decided "1 mg 3 times a week for 2 weeks" - which is for people without neurological involvement.

You'll need to see the doc again, ask them to check the BNF and to adjust your treatment.

The other document you may find useful in the future is this one - onlinelibrary.wiley.com/doi... - I suggest you orint it out and persue it. You'll want to highlight the bit on page 501 that says "No further testing for cobalamin levels is required"

That page also talks about Intrinsic Factor Antibodies (IFAB). This is a test for Pernicious Anaemia, but it gives negative results in half of those with PA, so it's a bit useless. Highlight the recommendations on page 501 that say -

1 Patients suspected of having pernicious anaemia shouldbe tested for IFAB. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).

2 Patients negative for IFAB, with no other causes ofdeficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response (Grade 2A).

For further info you can look at the PAS website - pernicious-anaemia-society.... and I would strongly recommend buying the PAS chair's book - What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency amazon.co.uk/About-Pernicio...

[Chalky1064 in reply to fbirder]

Evening fbirder and forum and many thanks for your reply. From your initial response it would seem that I may have PA, as I probably eat too much meat and love fish from raw to fried. By profession Im a chartered engineer so I love facts and figures so again thanks for the links and hopefully once I’ve reviewed them I may get some sleep tonight.

[Nackapan]

I was also shocked initially. If you pop back to your surgery you could get a print off of your blood results. See if folate and iron levels were checked too. No one at my surgery explained it either. Just told injections for life.

As Fbirder has said every other day should continue if neuro symptoms persist. Also once on injections you don't need your levels re checking of b12.

If your symptoms are quite mild at the moment it's good as treatment should be very effective and stop it getting worse.

I hope you find this forum helpful.

[Chalky1064 in reply to Nackapan]

Nackapan, many thanks for your reply. I’m kicking myself as I’ve has a number of symptoms ( well now I know they were symptoms, I thought it was a reaction to hitting my 50’s) over the last few months but without doing anything about it. At least now I have some form of diagnosis and wait for my injections on Monday. As you would expect at the back of my mind is well it’s only a few injections and that’s sorted or is this life changing?

[Nackapan in reply to Chalky1064]

You may be fine once on injections

.

I got worse before improvements made.

Some get the benefit quite quickly.

It sounds as though caught pretty early which is good.

Like you say a good start with a diagnosis thar treatment csn get started .

I too ignored too much thinking it was age related

Diagnosed with b12 defiency at 57. It's sneaky and csn take years to deplete stores.

If you still functioning on a daily basis that is good.

I did go to the doctors twice over 2 years prior but b12 wasn't tested!!

Hope it all goes well on Monday .