Scartgabe13

[scartgabe12]

My wife wss diagnosed with PA 3 years ago, after our daughter suggested she should have a blood test to find out if her b12 was low,it was36 ,our daughter who has had PA for 10 years, was right .my wife had loading doses then started to have one every3 months but recently noted she has,nt had one since January 23 ,she tried to book another dose ,but our doctor said she must have a blood test first ,she has had the result and her reading is 77 ,and our doctor has refused any more doses saying that readi ng of 77 is sufficent ,she has argued with him and our practice mananger but can't get any where what shall we do she is 75 years old.

[MrsTuft]

I can only guess the ranges but 77 is low if it’s the usual range used in the UK. Can you print the NICE guidelines and send them to the GP? Or self inject?

[Orchard33]

If 77 is her B12 score and it's the same scale my GP uses then she has a serious B12 deficiency and PA. Speak to the Pernicious Anaemia Society helpline and get advice as to how to deal with your GP. He does not understand the condition or how and when to test. Nor does he understand the significance of the number 77.

[Oneash]

She should be able to get a private shot for c£30 at a beautician, or dentist. Or as many of us do DIY. She mustn't go without, as that can do long term damage. Demand to see a haematologist for a second opinion, via the GP. Her blood test reading is low. And throw Martin Hooper's book at him with force!

[Narwhal10 in reply to Oneash]

Oneash,

If people investigate aesthetic* clinics as opposed to beautician’s, they will find qualified health professionals. Just in case anybody has concerns regarding whether they react to their first injection.

These people have simply either had enough of working for the NHS or are highly qualified in other countries but yet again due to the U.K.’s bizarre rules have to complete other courses and exams to be recognised as doctors here.

*edited thanks to bookish

[bookish in reply to Narwhal10]

Anaesthetic or aesthetic? Hadn't heard that before. Thanks.

[Narwhal10 in reply to bookish]

Oops typo - my bad. Well picked up bookish. Aesthetic (beauty). Yes, I have met several and whilst with one of my sisters, someone tried to hand us a flier for cosmetic work. Even she said, Maybe that is what I should do. She is a doctor.

Through my social circles, I know nurses and retired nurses, they are pretty vocal about their employer, it is not pretty. I’m just hanging in there because of my pension.

Scartgarbe13’s wife is having a difficult time of getting treatment but having a viable way forward is what they are seeking. Many Health Professionals complain that they cannot give good care because the system does not allow them.

[bookish in reply to Narwhal10]

No problem, and useful to know, just in case it comes to that. I know a couple of retired nurses and both felt the same. Hang in there! x

[Sleepybunny]

Hi,

Welcome to the forum.

Was the result for serum B12 or Active B12 (also known as holotranscobalamin)?

If the result is 77ng/L for serum b12 that is seriously low.

Sometimes results are given as pmol/L.

77pmol/L for serum b12 would also be seriously low.

It's possible to have severe B12 deficiency symptoms with normal or even above range serum B12.

My understanding in UK is that if a person is symptomatic for B12 deficiency they should be treated even if serum B12 is within normal range.

"but recently noted she has,nt had one since January 23"

Does she know why the GP surgery stopped giving her B12 injections after Jan 2023?

Has she got neurological symptoms?

Has she got proof of her previous PA diagnosis?

Have you considered joining PAS (Pernicious Anaemia Society)?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

They can offer support and pass on useful info.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS website has useful leaflets such as

Treatment changed – What can you do?

Helpsheet for Patient-GP Discussion

TREATMENT IS FOR LIFE

Some PAS members print these out and pass them to GPs.

There are some PAS support groups in UK.

These can be useful places to swap information.

pernicious-anaemia-society....

I suggest you search online for this UK health document "NICE CKS Anaemia - B12 and Folate deficiency" and read it thoroughly including the Background Information section.

Try to find the local b12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland and compare them with NICE CKS document I mentioned above.

ICBs England

nhs.uk/nhs-services/find-yo...

Health Boards Wales

wales.nhs.uk/ourservices/di...

Health Boards Scotland

scot.nhs.uk/organisations/

Search online for "name of ICB/Health Board B12 deficiency guideline" or "name of ICB/Health Board B12 deficiency treatment algorithm". Try searching forum posts here and if this doesn't work, try submitting a FOI (Freedom of Information) request to the ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.

Some of these local B12 deficiency guidelines are not as helpful as they should be. See blog post below.

b12info.com/gloucestershire...

Unhappy with treatment?

How to write letters to GPs about B12 deficiency.

b12deficiency.info/b12-writ...

Link above has letter templates. Point 1 in above link is about under treatment of B12 deficiency with neurological symptoms.

I prefer writing letters if I need to query something as

1) it avoids face to face confrontation and allows time to think about what to say.

2) letters to GPs are supposed to be filed with medical notes so are a record of an issue being raised.

It's vital to get adequate treatment. Delayed or inadequate treatment for B12 deficiency increases the risk of developing permanent neurological problems. In severe cases, the spinal cord may be affected.

If GP is reluctant to reinstate B12 injections then might be worth discussing this PAS article below with them. It mentions a severe potential consequence of B12 deficiency if treatment is delayed/inadequate.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Some forum members have been supported by person who runs B12info.com.

b12info.com/

The B12 Society (based in Scotland)

theb12society.com/

I left some info that might be useful in this thread

"elderly relatives b12 injections stopped by GP after 30years"

healthunlocked.com/pasoc/po...

Thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

Self Treatment

Some UK forum members turn to self treatment if NHS treatment is not enough. Some get extra B12 injections from a private GP or beauty salon (expensive), some try high dose oral B12 (1000mcg or higher) but this doesn't work for some people and some as a last resort turn to self injection (SI). There is a pinned post about SI.

I'm sure others will be along soon to offer support.

Her situation is quite common on the forum sadly...search forum posts for "injections stopped".

Another recent thread a few below yours might be worth looking at.

"Vit B12 deficient again after being taken off injections two years ago"

healthunlocked.com/pasoc/po...

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.