B12 Injections for PA

[Xinnia53]

I have been having B12 injections every 3 months at my GP practice for the last 3 years for PA but about 10 days before my next injection I become very fatigued, sleep every afternoon, out of breath just walking upstairs, unsteady on my feet and loss of concentration. Does anyone else suffer this? Can you get a B12 injection at the GP’s more frequently than 3 months on the NHS?

[Nackapan]

Yes.Their guidance is 8-12 weeks. BNF guidelines

In your case put it in writing.

More effective.

My daughter did this and got 10 weekly !

I get them on prescription 2 weekly at present.

So yes doctors can prescribe I the best interest of their patient

8 weekly request shoukd not causes a problem at all .

Most doctors just need to read the guidelines.

3 monthly was the 'normal for years even put on my prescription in error once causing the nurse to refuse yo give me my injection.

So write. This ua a very reasonable request and will be scanned on your notes.

Keep it short. Assertive .

List symptoms that return.

It seems very clear what you need.

[Xinnia53 in reply to Nackapan]

Thank you so much for the info I will definitely ask GP if I can have 2 Monthly jabs.

[Gambit62 Administrator in reply to Xinnia53]

point out that the guidelines in the BNF were changed a couple of years ago.

[Xinnia53 in reply to Gambit62]

Thanks

[Natural1970 in reply to Xinnia53]

I am in the exact same predicament. I have the very same issues that you are experiencing. It's hard to convince the GP that I need injections more often than 12 weeks. I will take the advice you were given in here about writing a letter to the GP. At the moment I have to have another blood test to convince them.

[davidleigh]

Yes I have the same conditions, but I don't think its related to B12 injections,more my Heart and age,I'm sorry to say.

[Silvershine]

How are your Folate levels - I had the same symptoms and my blood test revealed low Folate. After taking daily high dose Folate for 4 months (I am now switching to daily low maintenance dose) my symptoms have improved (especially the breathlessness and utter feeling of fatigue and feeling I could not carry on and lift one foot in front of the other). I also SI B12 every other day (also for the last 4 months) hoping to improve the nerve damage I have suffered having PA for so long. GP refused to accept blood tests from Guys Hospital (showing both Folate & B12 deficiency) saying that they use a different lab - having me do a 2nd blood test with results that, although B12 was in the lower range, was deemed "normal". When told this I said that their normal might not be my normal (level that I need to live normally) and again when questioning the low folate the GP turned my statement back on me saying that maybe low level folate is my normal. I walked out with neither B12 nor Folate - my neuro symptoms getting worse and worse over years.

[Cherylclaire Forum Support in reply to Silvershine]

I cannot see that Guy's Hospital would be using equipment inferior to that of your local hospital. If you have a PA diagnosis, this should have been sufficient to get proper treatment -and regular checks on folate, ferritin, vitamin D and thyroid.

Once on B12 injections there is no reason to recheck B12 levels- they will be high. The only reason to do so would be if the patient is unresponsive to B12 treatment or condition is worsening. In order to help you. If your GP does not want to act on results from Guy's, s/he is standing in the way of your health maintenance. PA does not go away or get cured -it gets managed.

If he won't manage it, I'm really glad you did.

I'd still look for a better-informed GP -or better yet, one that is supportive and willing to listen to you. Information on PA is not the difficult bit: the Pernicious Anaemia Society for instance has plenty.

Folate and ferritin can be detrimental if too low or too high. Mine would be low, rise on prescribed supplements then drop down quite quickly, and took a couple of years to stabilise at optimal levels, with the help of a daily multivitamin and mineral tablet. Control is difficult without help.

[Nackapan in reply to Silvershine]

So how did your doctor explain your on going symptoms ?

[Silvershine in reply to Nackapan]

She didn't - I was so frustrated and angry at her disinterest / pushback I never went back about it. At the end of a recent telephone appointment with a vascular consultant - his last throwaway comment was to tell me I was vitamin deficient (then didn't tell me which on (s)). I got a private blood test and set about treating myself! In the past I felt like I was going in with a shopping list of of symptoms - initially GP would treat each symptom one by one, as if it was a condition on it's own (so symptoms were never put together to get an all round picture) . I was subjected to multiple hospital consultant appointments and tests (over years). Eventually at my last GP appointment for referral for cataracts treatment (by ophthalmologist after routine eye test for reading glasses) I attempted to try to talk to her about another symptom but she rudely sat non-verbal staring straight ahead at her screen (which I know is a tactic used by HR as a signal to end interviews) - leaving me no option other than to leave the room in silence! That was humiliating! Strange thing is that most of the symptoms (being treated individually) fell under the B12 / folate deficiency umbrella. If she has just recognised that, it would have simply taken one visit then treatment - and probably saved the NHS a fortune in wasted consultancies, multiple x-rays, MRI's and duplicate blood tests - no wonder the NHS is overstretched and broke (as well as me)!. One of my "ailments" that has miraculously cleared up is Rosacea (1st diagnosed around 2012!). My skin was so dry and flaky - skin mites were having a feast, causing an allergic reaction - I haven't seen any evidence it was a deficiency symptom but it started to clear up after about the 3rd week into my self treatment.!

[Nackapan in reply to Silvershine]

That's good!Ivd hind tgd other way with a veth dry itchy scalp tgst j actually needed a doctor to look at.

Got z telephone consult .

I'd tried everyone they suggested o the phone and more.

Hence needing if looked at . 7m now.

Yes I'm dissallusioned at present.

I'm in 'the system ' as get frequent b12 prescribed.

No Gp face to face since Feb. 2020

A long awaited neuro Opthalmology appt. Couldnt even give a explanation for ongoing problems.

I even checked he was a consultant.

Bizarre experience.

Not rushed, did listen.

Then back to thd anxiety . Subliminal . I cut him short o that and said the Gp has explored thst possibility ag length as well ax domestic abuse j know they have to but I'm nearly 3 yesrs in. Of courses I've got some it's s symptom nog thr cause.

I think actually need applauding for not getting depressed at the lack of explanations at least.

This one thing for each consult is ridiculous. How will they even put the jig saw if symptoms together.

??

I'm presently contemplating who to sed next.

It took years and years to get s diagnosis for one of my daughters leaving her with a disability. Loss of hef loved teaching carreer

Like you say prevention is better than a cure.

Why on why isn't b12 on a standard blood form

Af least we woujd all know what level we were functioning at.

Specialists need to communicate with each other I'd z 'difficult case.

I've recently got my NHS app to work tk read consults.

It warns you it coukd upset.

The only comment thst did that was my Gps words .

'The usual symptoms ' discussed AGAIN.

Well i wonder why that is ???

Still looking for answers to move on.

[Xinnia53]

Thanks for the information.

[Hidden]

There is another option which is to ask if you can be shown how to self inject. You would then get a pack of 5 ampoules every year so would have enough to allow for injecting at 10 weeks instead of 12.

It is simple to do and you don’t need to get appointments.

[Nackapan in reply to Hidden]

Yes it's possible to get a prescription fir what frequency you need. This Gp appears to be particularly arrogant and short sighted.

Not even read 'their bible'

[Sleepybunny]

Hi,

"Can you get a B12 injection at the GP’s more frequently than 3 months on the NHS?"

BNF guidance suggests a B12 injection every 2 months if neurological symptoms are present and every 2 or 3 months if no neuro symptoms.

How many loading injections did you get at start of treatment?

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

See section for those with "neurological involvement" in link above if neuro symptoms present.

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about writing to GP if under treated for B12 deficiency with neuro symptoms present.

Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you get hold of a copy of local guidelines and compare it with BNF, BSH and NICE CKS links below.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and folate deficiency

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

Click on underlined headings in above link for more info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

I've written some very detailed replies in the threads below with lots of B12 info you might find useful eg more about causes of B12 deficiency, B12 books, B12 articles, B12 websites along with a few hints about managing unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained, just someone who struggled for years with unrecognised B12 deficiency.

[Slr75]

I've had PA for 3 years well diagnosed for 3 years but I think more like 25yrs I couldbt be bothered with the fight with my GP for regular injections, so I inject myself every other day sub cut just now as my neurological symptoms are severe and I get my 12 weekly IM from my doctor.... Costs around £20 per month for my b12 10 ampules and about 20 quid for a huge supply of syringes and needles