yay!!!

[PlatypusProfit8077]

My GP agreed to go from monthly injections to weekly!

I had taken in my symptom diary/tracker and she asked a few questions about how I was feeling, had anything changed/improved/worsened etc. And I asked if she would consider increasing the injections and she agreed!

She did say she didn’t think it would make much of a difference (as she is still investigating non-B12 reasons for being sick and has scratched PA off the list after I returned a negative IFAB and PCAB tests) but she knew it wasn’t toxic and she was happy to trial it with me.

So we will see. I reacted awfully to my first monthly jab (after only 3 x once per week loading doses) with about 24hrs of diarrhoea, nausea, increased shakiness and exhaustion. Hope this time is better!

[Hockey_player]

Very best wishes! I hope it helps!

[pitney]

Hope you notice a change for the better

[Sleepybunny]

Hi,

Glad your GP is trying more B12.

Thought you might find these links interesting.

Risk Factors and Causes for PA/B12 deficiency

pernicious-anaemia-society....

b12info.com/whos-at-risk/

b12info.com/causes/

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

"I reacted awfully to my first monthly jab (after only 3 x once per week loading doses) with about 24hrs of diarrhoea, nausea, increased shakiness and exhaustion"

Some people experience a drop in potassium levels when B12 treatment starts.

Did GP check potassium?

Other B12 websites

Stichting B12 Tekort (Netherlands)

stichtingb12tekort.nl/our-e...

B12 Awareness (US)

b12awareness.org/

The B12 Society (Scotland)

theb12society.com/

Two useful B12 books

Published a few years ago so some bits might need updating.

Could It Be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and J.J. Stuart (US authors).

Very comprehensive. Lots of case histories.

What You need to Know about Pernicious Anaemia and Vitamin B12 deficiency

by Martyn Hooper, former chair of PAS (Pernicious Anaemia Society)

I'm not medically trained.

[PlatypusProfit8077 in reply to Sleepybunny]

I was the one who pointed out the section in the drug info for hydroxocobalamin that says it can affect potassium! The doctor was surprised and quickly checked what my potassium levels had been in the last test - they’ve actually gone up since starting B12. But I said that having all the coconut water and bananas etc had reduced my palpitations so much.

I feel like I’m educating her more some days!

Thank you, I have looked at most of those links already but I’ll check out the ones I haven’t.

[Sleepybunny in reply to PlatypusProfit8077]

"I feel like I’m educating her more some days!"

Has your GP considered joining PAS as an affiliate member?

pernicious-anaemia-society....

Other help for doctors

Has your GP heard about Club B12?

club-12.org/

It's a worldwide 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....

[PlatypusProfit8077 in reply to Sleepybunny]

Thank you! I’d really like her to join those organsisations and read those papers. Is it overstepping to give a doctor medjournal/research articles?

She’s just left for Europe for a month in order to present at a medical conference about breastfeeding and maternal health (her passion).

[Sleepybunny in reply to PlatypusProfit8077]

I don't think it's overstepping the mark but there's no guarantee she'll read the info.

Perhaps you could note them down and say "I thought you might find these interesting". Keep the list short.

She might be interested in these links if her special interests are maternal health and breastfeeding.

From B12info.com - some details may be upsetting to read.

b12info.com/pregnancy/

b12info.com/children/

PAS have this leaflet

Vitamin B12 Deficiency in Pregnancy and Newborns Leaflet

pernicious-anaemia-society....

[Cherylclaire Forum Support]

Well done, Platypus - have a banana !

[PlatypusProfit8077 in reply to Cherylclaire]

I’ve been potassium loading like crazy - it definitely helps! And I don’t even like bananas or coconut water lol