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Lucieb01 profile image
12 Replies

I was on a maintenance dose of b12 & vitd but know gp has stopped it, when I phoned

i was told i did not need it anymore, fuming is not the word, he knows nothing about how i feel, stupid little upstart.

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Lucieb01 profile image
Lucieb01
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12 Replies
fbirder profile image
fbirder

Kick up a stink. Go see him and take a friend for moral support. If that doesn't help them join the PAS and ask them to advise you.

Lucieb01 profile image
Lucieb01 in reply to fbirder

I am a member of pas

Sleepybunny profile image
Sleepybunny

Do you have a confirmed diagnosis of PA (Pernicious Anaemia)?

If yes, in UK PA treatment is injections for life. There are other causes of b12 deficiency that require lifelong treatment besides PA.

Standard UK B12 treatment for B12 deficiency without neuro symptoms is 6 loading injections over 2 weeks then injections every 3 months.

If a person has B12 deficiency with neuro symptoms, they are supposed to get loading injections every other day for as long as symptoms continue to get better. Once symptoms have stabilised, it's an injection every 2 months. Quite a few UK people on here struggle to get correct treatment for b12 defic with neuro symptoms.

B12 Symptoms lists

pernicious-anaemia-society.... click on Symptoms checklist

UK B12 treatment info

1) see "BSH Cobalamin and Folate Guidelines" Info on UK B12 treatment is about a quarter through document. Also useful flowchart about diagnosis/treatment about three quarters through document. Some GPs may not have seen this document. I gave a copy of it to mine.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency"...should be on page 3 or put "cobalamin and folate guidelines" in search box.

2) Also see BNF (British National Formulary) Chapter 9 Section 1.2

GP will have a copy of this book in surgery or online access to it.

evidence.nhs.uk/formulary/b...

"i was told i did not need it anymore,"

Did GP explain why he felt you didn't need it anymore? If you find out why then people on the forum might be able to suggest info that would help.

How PAS can help

Think it's easier for PAS to help if a person has confirmed diagnosis of PA, they sometimes write letters on behalf of members. Not sure if PAS office is open today but should be possible to leave a phone message.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

martynhooper.com/2016/09/23...

Other sources of help

1) Summary of B12 documents.

See third pinned post on forum. I found the summary fbirder compiled very useful (last link in list). lots of quotes from mainly UK documents that have helped me when faced with a medic who hasn't done their homework on B12.

2) Martyn Hooper's latest book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" I gave a copy to my GP.

3) B12 Deficiency Info website has useful links about writing letters to GPs. Link does not seem to mention the BSH Cobalamin and Folate guidelines which I do when writing about B12 to GPs. The person who runs the website can be contacted by e-mail.

b12deficiency.info/b12-writ...

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

Another list of B12 symptoms

b12deficiency.info/signs-an...

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

HDA pct

A UK charity that gives free second opinions on medical diagnoses and treatment.

hdapatientcaretrust.com/

I am not a medic just a person who has struggled to get a diagnosis.

Hillwoman profile image
Hillwoman in reply to Sleepybunny

That's a very interesting link, Sleepybunny.

Sleepybunny profile image
Sleepybunny in reply to Hillwoman

I've mentioned this charity before Hillwoman. Would be interesting to know if anyone with B12 defic/PA has found them helpful.

Gary56 profile image
Gary56

They stopped my b12 because blood test showed normal levels. Still on folic acid though. Dr referring me to neurologist. I also have eemphhysema, which I suppose complicates (brain fog moment) diagnosis. They're trying to rule out MND. Sorry for rambling.

Sleepybunny profile image
Sleepybunny in reply to Gary56

Hi Gary56,

If you haven't already might be helpful for you to start your own thread on teh forum.

Gary56 profile image
Gary56 in reply to Sleepybunny

Sorry sleepybunny, didnt mean to ramble on :-) I originally just wanted to say maybe Lucies B12 levels were fine, and thats why dr took her off them.

Lucieb01 profile image
Lucieb01 in reply to Gary56

Hi gary56

just wish I felt fine

Gary56 profile image
Gary56

I understand, the worst part is the not knowing. I hope you get your answers soon xxx

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