Bit of a success with frequency of B1... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 membersβ€’24,065 posts

Bit of a success with frequency of B12 injections

Charlie2024 profile image
β€’23 Replies

Hi, I just wanted to share a bit of a positive experience. I had about a year long history of feeling jittery, bit light headed, palpitations, classic anxiety symptoms. In desperation I asked the GP if she could check to make sure there was no physical reason for this. She kindly ran some basic checks and because my mother was newly diagnosed as B12 deficient, she included a check on my B12.Everything came back fine apart from a B12 level of 100. Commenced loading doses and then the plan was 3 monthly injections.

Improvement was a bit gradual, but 8 weeks after starting the loading doses I was feeling 90% back to normal. Anxiety symptoms all gone.

Hallelujah I thought and went off on holiday. Then the anxiety/adrenaline rushes started again, feeling jittery and not connected to my body?

Came home and immediately sourced a private B12 injection, which corrected everything within 48 hours.

I spoke to my GP about this, and I had previously mentioned to her that I was happy to self inject, (ex nurse) and she agreed that I can have the vials and needles etc to self inject monthly. Granted, this is on a trial basis to be reviewed in 3 months, but it's keeping everything on an even keel for me.

So the practice nurse talked me through the procedure and observed me doing my first one. She has now been tasked with finding more patients from their B12 clinic who would be willing to self inject and the GP surgery has amended their policy and drawn up guidance for other patients.

Written by
Charlie2024 profile image
Charlie2024
To view profiles and participate in discussions please or .
Read more about...
23 Replies
β€’
clivealive profile image
clivealiveForum Support

Well done and congratulations.

Did your GP not investigate the cause of your B12 deficiency?

I wish you well.

Charlie2024 profile image
Charlie2024β€’ in reply toclivealive

Hi, she did intrinsic factor test but this did not confirm PA, I will discuss causes when I next see her. I was more focused on winning her round with evidence and guidelines to show I needed more frequent injections.

Regenallotment profile image
Regenallotment

that is a WIN πŸ†πŸ‘πŸ€©πŸ₯³ great work, it’s fab when you leave a trail of improvement behind πŸ‘πŸ†πŸ₯³

Charlie2024 profile image
Charlie2024β€’ in reply toRegenallotment

Thank you. She discussed me and the new NICE guidelines at their monthly education session and it was agreed to review their policy.

Nackapan profile image
Nackapan

Brilliant. I've presently got an NHS prescription to self inject too.

2 weekly .

I choose to do subcutaneous at home and the nurse IM every 6 weeks .

I'm sure it's thd way forward.

Hope monthly works for you.

In mh experience of over 3 years now.

Subcutaneous work just as well.

I have an IM one in the hope if will last longer .

Also darnt change a thing.

Although thd prescription often goes to the surgery ax so fes of us . So havd to get it on a paper prescription ax thd IT csnt cope with 'unusual ' cases .

Hood you maintain your improvements.

A very quick recovery .

My level was similar at 106 pg/ mL

Took alot longer for improvements..

Sailinglady profile image
Sailingladyβ€’ in reply toNackapan

This probably won't mean anything to you, but tell the surgery to "untick the PA box" when they are prescribing and then your prescription can go electronically. When B12 is administered at the surgery, they can claim a fee for giving it. To do this they mark the prescription as "personally administered". Then the prescription is printed out and sent off. The PA box defaults to being ticked and forces the prescription to be printed (this is outside the surgery's control).

If the prescriber unticks that box, the prescription will go to the pharmacy electronically.

Charlie2024 profile image
Charlie2024β€’ in reply toSailinglady

Hi, the prescription went electronically to the pharmacy.

WIZARD6787 profile image
WIZARD6787β€’ in reply toSailinglady

Nice work and thank you for sharing!

Jillymo profile image
Jillymo

Great new's Charlie2024, with a bit of smooth talking you can win anybody around. πŸ˜‰

I hope you continue to improve and are able to enjoy many more holidays.

Well done. πŸ₯‡

Hockey_player profile image
Hockey_player

Awesome! It's so good to hear positive stories like this! Make sure to monitor your symptoms. Ideally, you want to space out your shots so that your symptoms do not come back.

Welshtoffee profile image
Welshtoffee

That's brilliant well done

ClaireWF1346 profile image
ClaireWF1346

Great news! Sounds like you have a decent GP and have changed the fate for future patients like you who are patients at your surgery πŸ‘πŸΌ

Wwwdot profile image
Wwwdot

Hi Charlie

What a star you are! Great news and so glad you are feeling better!

Your post has made my day and gives me hope that my surgery may one day prescribe B12 for me!

πŸ€—πŸ€—πŸ€—

Myoldcat profile image
Myoldcat

Amazing! Both for you and for other B12 patients at the surgery. Well done for bringing about that result - wish all gp's were so enlightened. Continued good health to you and your mother

Wheat profile image
Wheat

hello Charlie2024, pleased for you . Sounds like your surgery is making real progress, of course it saves them staff/money too. Best wishes, x

Charlie2024 profile image
Charlie2024β€’ in reply toWheat

Absolutely. Initially when I asked for more frequent injections she said the surgery did not have the facilities (staff and appointments) to meet my expectations, so that was when I suggested I do them myself and quoted other places that were doing similar.

B12again profile image
B12again

Sent you a Chat.

Cherylclaire profile image
CherylclaireForum Support

Great news and good for you, Charlie.

Also good to hear of a common-sense GP reaction to your findings - instead of the hysteria which is sometimes experienced as a result of telling the truth by forum posters. Refreshing.

Practice nurse also deserves praise for taking on this new role.

When, years ago, my GP suggested that the nurses would be happy to help instruct me in self injection, how could she have known that they would recoil in horror at the very thought ? So I asked on here, watched some videos, got help with online ordering and just did it .... scared stiff, but not begging !

Narwhal10 profile image
Narwhal10

Back of the net Charlie2024.

The GP surgery has amended their policy and drawn up guidance for other patients.

It maybe worth writing a Thank you card/letter to your GP for this. They can use it as evidence for their Continuous Professional Development. Every 3 years they have to prove themselves to the General Medical Council.

Good to know that you are on the mend.

🐳

Charlie2024 profile image
Charlie2024β€’ in reply toNarwhal10

Hi, I already have! To the GP and the Practice nurse. I was a nurse myself so know how important positive feedback is.

Narwhal10 profile image
Narwhal10β€’ in reply toCharlie2024

Excellent and if you wish to get that information into many other Systems and are a member of the Pernicious Anaemia Society; it is worth dropping them an email with the name of your GP Surgery.

Cofion Cynnes

Seabird4 profile image
Seabird4

Wow amazing good on you, great to hear a good news story πŸ€

Sleepybunny profile image
Sleepybunny

Great news and good to know they are looking for other patients to try SI at home.

"she did intrinsic factor test but this did not confirm PA, I will discuss causes when I next see her"

Apologies if you've seen these links before. Thought they might help you or others reading this thread.

Does your GP know about Antibody Negative PA?

See flowchart below from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/engli...

Link to full BSH guideline

b-s-h.org.uk/guidelines/gui...

NICE CKS Anaemia - B12 and Folate deficiency says about half of people with PA get a negative result in IFA test. See Background Info section.

cks.nice.org.uk/topics/anae...

New NICE B12 deficiency guideline (published March 2024) does not use term PA, uses AIG (Auto Immune Gastritis).

nice.org.uk/guidance/ng239

Risk Factors and Causes for PA/B12 deficiency

pernicious-anaemia-society....

b12info.com/whos-at-risk/

b12info.com/causes/

b12-institute.nl/en/causes-...

Thread about tests for PA/B12 deficiency

healthunlocked.com/pasoc/po...

Help for GPs

1) PAS website has a page for health professionals.

They can join PAS as affiliate members, no charge.

pernicious-anaemia-society....

2) Has your GP 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 in UK.

3) Good articles to pass to GP

From Mayo Clinic, US

pubmed.ncbi.nlm.nih.gov/311...

The Many Faces of Cobalamin (Vitamin B12) Deficiency

Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1

Affiliations expand

PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002

Free PMC article

Recent BMJ article about B12 deficiency by B. Wolffenbuttel

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

bmj.com/content/383/bmj-202...

Vitamin B12

BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)

Cite this as: BMJ 2023;383:e071725

The author of above also wrote an article for PAS in Jan 2024.

Only One Chance

pernicious-anaemia-society....

I'm not a health professional.

Not what you're looking for?

You may also like...

Consistent with b12 absorption problem?

Hi folks This is my b12 journey. For context, I have autoimmune under-active thyroid disease...
Laundretta profile image
β€’

GP Stopped my 3 monthly B12 Injections

New to this site. Diagnosed B12 and Folate deficient Jan 2018 after complaining of a number of...
guitarman49 profile image
β€’

What a waste of NHS Hydroxcobalamin ampoules

At my GP surgery I have to get a perscription for b12 ampoules and take them with me when I get the...
carer999 profile image
β€’

How do I decide frequency of injections?

Hi I've been on here a couple of times now and benefited from advice. I've had monthly B12...
LizWilsonpa profile image
β€’

Side effects of B12 injections

Hi. I had loading doses of B12 about 10 years ago after several years of fatigue and neuro...
Hayley31 profile image
β€’

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.