I was just refused my monthly jab!

[Greeneyecolor]

Hi all...was hoping for your opinions. I see a NP (who has a good understanding of PA) monthly for my jab. Unfortunately she was out today, so another NP came in and refused to administer my shot based on my recent blood work (of course serum levels are over 2000!). She also stated that MMA was fine (which it is) and intrinsic factor was negative (for which I tried to explain my knowledge of false results). She was arrogant, I was angry, and now I'll be waiting until next month for my shot when my regular NP is back. Any thoughts? Thanks for allowing me to vent my frustration. Happy Holidays to all!

[Nackapan]

I've just refused consent for a serum B12 test .Once your regular doctor returns ask them to write on your notes clearly your b12 regime.

So annoying

[PlatypusProfit8077]

how frustrating! Can you book an earlier appointment? Waiting an extra month for a jab would be awful

[Jillymo]

Of late this situation seems to be on the rise ! You need to clearly state once on injections there is no point in retesting your levels. Common sense should tell them your levels will be high. I always ask what they are testing for and refuse to offer my arm if B12 is on the blood form. You could try approaching the surgery manager to explain your situation. It seems there are a lot of ignorant Drs about that are in need of education with regard to the condition so arm yourself with information. Explain to them 'they wouldn't stop a diabetics' medication.

Season's Greetings to you too. 🌲 🎁

[FlipperTD]

Dear oh dear... [scientist, not medic.]

Another victim of wasted NHS resources. That serum B12 didn't need doing. It's misleading. The NP has clearly reacted to a pointless result based on their ignorance, disguised as arrogance. If you didn't actually consent to the B12 test then you've been assaulted.

Let's hope next month the situation resolves itself, but it's worth remembering key words like 'waste', 'assault', 'informed consent' etc.

Merry Christmas!

[oilbeetle]

I dont event try, like a lot of people I buy online and self-inject.

The time I woud need to book and attend the appointments would mess up my work routine and I would probably have to fight for weekly or bi-weekly injections.

I suspect that the issue is lack of clinical time, when I add up the cost of B12, syringe and two needles bought online its probably around £1.50p a shot or less, but 15 min nurse clinician appointments are expensive and in demand

[Nackapan in reply to oilbeetle]

I have a 2 weekly NHS prescription presently. I self inject so only see a nurse for 3 mins 6 weekly .

Never had 5 minutes leg alone 15 !

Nurses appointments are for such things like B12 injections so not a wasted resource anyhow.

Let's not devalue b12 injections as a waste of nurses time as they clearly do.

Also highlights needs of B12 on clinical notes.

And your medical record.

Diabetics self inject with s prescription after all.

So thr way forward with B12 .

I personally would not like to be totally dependant on buying it from abroad as often out of stock ect.

Since Brexit rules have changed too.

Shouldn't have to anyhow

[Sleepybunny]

Hi,

Maybe you could pass these articles on to NP?

Some of the info is specific to UK or Netherlands.

Testing B12 During Treatment

pernicious-anaemia-society....

stichtingb12tekort.nl/engli...

I think you mentioned before that you were in US.

PAS has two support groups in US.

Can be useful places to swap info.

pernicious-anaemia-society....

PAS membership is separate to membership of this forum. People do not need a confirmed diagnosis of PA to join.

pernicious-anaemia-society....

Help for doctors/other health professionals

1) PAS website has a page for health professionals.

They can join PAS as healthcare affiliate members, no charge. Open to health professionals across the world.

pernicious-anaemia-society....

PAS also have webinars on PA/B12 deficiency that might be of interest to you, NP and your doctors.

pernicious-anaemia-society....

2) Has your doctor heard about Club B12?

club-12.org/

It's a group of doctors and researchers who are looking into B12.

They have regular zoom meetings and have hosted a conference.

3) Good articles to pass to doctor/other health professionals

B. Wolffenbuttel wrote an article for PAS in Jan 2024.

Only One Chance

pernicious-anaemia-society....

Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).

In my personal opinion he's one of the few doctors who understands B12 deficiency.

4) B12d.org ( a UK charity) has some interesting online talks on B12 deficiency.

b12d.org/event/

I hope you can get your injection sooner.

Can you access them from somewhere else?

I'm not a health professional.

[Greeneyecolor]

Thank you all for your responses! A situation like this taps right into my own self doubt regarding PA. This NP's argument was that too much overloading of B12 could actually CAUSE nerve damage (stating that she has researched)! I was too surprised by her refusal and too upset to have a rational discussion with her. Since there is no active B12 test available here in the US, I monitor my situation using MMA, homocysteine, etc...and those results are very good. All makes me wonder if I am one of the lucky ones that does absorb enough from my sublinguals. All so confusing! Yesterday just fortified my confusion. I realized that some cases of PA are cut and dry, but what about those that are similar to mine?

[qwertystar]

buy your own supplies and self inject?

[Hockey_player]

Don't let them test your B12 levels. It's nice to not have to go into a doctor to get injections. My husband gives me mine. Have you considered self-injecting? It is probably better not to wait a full month for a shot if you will start getting symptoms back before you get it.