Jude's

[Judedench]

hi there was diagnosed 6 years ago have had injections every 12 weeks doesn’t feel like enough but GP just wrote to me saying that according to my blood test taken 6 years ago I no longer need the injections and can now absorb through food originally was told I don’t absorb it and even through lock down had to go to surgery please help as I’m worried that I will decline rapidly with no injections

[charks]

If you have PA it is an incurable illness. You body will never be able to absorb B12 from food and without B12 you will eventually die. Tell your gp that, by refusing you B12, he is sentencing you to death.

[Judedench in reply to charks]

thank you I am a bit confused as they are going by a blood test that was taken after the loading dose 6 years ago to make sure I was absorbing it apparently and has put in her letter that me as a patient will be reluctant to stop taking it as it makes me feel good I thought I was diagnosed and taking it to keep me alive she clearly hasn’t got a clue and if they wrongly diagnosed me then what the hell am I suffering with as still have majority of the symptoms just less painful and debilitating due to the injection

[charks in reply to Judedench]

It is so frustrating having to deal with doctors that are so ignorant. Just because you had high levels in the blood test taking 6 years ago doesn't mean you are absorbing B12 from food. As far as I know there is no test that will diagnose that. You had high levels because of B12 supplementation.

What is even more frustrating is the fact that most of them won't even try to educate themselves. I sent my doctor loads of information on B12 to prove I needed it and he couldn't be bothered to read it - said he was too busy.

It sounds like your doctor should be giving you more frequent injections not stopping them completely.

I think you will end up like most of us on this forum - DIY treatment.

[Doris11 in reply to charks]

I was told by my (lovely) GP I have to much time on my hands! I am a retired Nurse and thanks to these Groups PA and Thyroid UK I have been researching! But she did say “you know your own body” ❤️

[Wwwdot]

Hi Jude

Time has come to row your own boat as we have to - the potential for recovery is a wonderful experience. It’s not easy but from my perspective it’s a lot better than hanging on a GPs coat tails begging for an injection.

At least self treatment has no overdose risk and yet much improved recovery potential. At least I have a life this way. Hope you find your way too.

🤗🤗🤗

[HeartyGilly]

fight your GP to continue your B12. But it sounds like you need more, like most of us do. We have to self inject in order to get the amount of B12 we need to survive.

[Sleepybunny]

Hi Judedench,

Just a quick reply as I'm about to go out.

Are you a PAS member?

pernicious-anaemia-society....

PAS membership is separate to membership of this forum.

You do not need a confirmed PA diagnosis to join PAS.

pernicious-anaemia-society....

There is a PAS helpline for PAS members.

They have some useful leaflets eg

"Treatment changed – What can you do?"

"Treatment is for Life"

pernicious-anaemia-society....

I wrote a detailed reply on this thread below with lots of B12 info.

healthunlocked.com/pasoc/po...

Unhappy with treatment?

How to write letters to GPs about B12 deficiency

b12info.com/writing-to-your...

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

healthunlocked.com/pasoc/po...

If you have time, try to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) or Health Board and compare them with NICE CKS guidance for B12 deficiency.

Try an online search, search forum posts or submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.

NICE CKS B12 deficiency

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

There is a pinned post "Various PA/B12D resources" that has useful B12 info.

Pinned posts are on right hand side of screen if on computer. You may need to scroll up or down to find them.

Many UK forum members turn to treating themselves if NHS treatment is not enough.

I'm not medically trained.

[Cherylclaire Forum Support]

There is a test that can give you a pernicious anaemia diagnosis: the Intrinsic Factor antibody (IFab) test - although I would not call it a "PA test" exactly, as it will only pick up between 40-60% of those with pernicious anaemia.

Since many GPs seem unaware of this, there is the tendency to use a single negative result to rule out pernicious anaemia completely. All the UK medical guidance I have read makes it perfectly clear that this is not advised. The founder of the Pernicious Anaemia Society (PAS), Martyn Hooper, had to have three tests before getting a positive test result returned.

Well, I have also had three IFab tests: all negative. This did not surprise me. My diagnosis was for functional B12 deficiency - after the B12 injections I was given for my B12 deficiency did not stop my rapid deterioration. This condition will mean that plenty of B12 can be found swimming in your bloodstream - but it never reaches the cells/tissues that are crying out for help !

There is a blood test for this too, which, with some eliminations (for renal problems and SIBO), demonstrates the existence of a problem that can affect the transporting system. This is a methylmalonic acid (MMA) test - MMA being a measurable substance in your bloodstream, one that will build up rapidly if there is no/insufficient B12 in the blood to link up with. So for someone with PA for example, one would expect MMA to drop to within normal range once the B12 injections have started - certainly by the time the 6 loading injections have finished.

If there is a functional issue, however, MMA will stay raised, because there is a problem with forming the link that will take the B12 on to where it is actually needed. It will stay raised until more frequent B12 injections start to work, in that at least some of this manages to get through and symptoms start to improve. Until B12 reaches cell/tissue level. For me, even on every other day injections, this took me three years.

By the way, none of them ever make me feel good - just less worse. For the first six months, these B12 injections were given by the GP surgery. I now self inject .

I'm not suggesting that this is your problem. I'm saying that measuring serum B12 after an injection does not tell a GP anything at all about whether the B12 is then reaching cells in sufficient amounts. It can only tell them that the injected amount of B12 has reached the bloodstream. An active B12 test will go a step further and tell you how much of the B12 in your bloodstream is useful and how much is inactive. But it would still not yet have reached it's target.

Yes, you could try to help your GP to understand - some are well aware that they have patients who do not respond well to the usual frequency of a single injection every three months - but you may want to try with another GP, one willing to work with you to try and improve your life - not one who has already decided that you are getting a kick from a vitamin boost !

It has been my experience that GPs even within the same practice have very different views - but this is because we are all individuals (sadly not often reflected in the frequency of our B12 treatment). It might well help to make a list of your symptoms, with a sentence of explanation. Also have any improved/ become less severe or less frequent/ worsened/ disappeared ? How long after injections does any benefit wear off ? You might want to check your symptoms against those on a comprehensive list of B12 deficiency symptoms - such as those on sites like PAS.

How can any GP be sure that you are able to absorb B12 through food unless your B12 deficiency was caused by a dietary deficiency ? Even then, a vegetarian or vegan is statistically as likely as the rest of the population to have PA or SIBO or other absorption issues.

With this level of misunderstanding becoming a fairly common story here, it is unsurprising that so many have to resort to self injection.

[Danni455]

I wish my gp had found mine earlier. If I were you I'd keep having blood tests to check though.

[Sleepybunny]

Hi,

A few more links that might be useful.

I gave my GPs a list of all my symptoms. I used PAS list below and added extra symptoms at bottom of page. Make sure you include any neuro and spinal symptoms.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

b12awareness.org/cobalamin-... (from B12 Awareness - US website)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

PA needs life long treatment. See PAS leaflet "Treatment is for Life" and maybe print out a copy for your GP. You would need to be a PAS member to print this out.

pernicious-anaemia-society....

PAS membership

pernicious-anaemia-society....

Access to medical records

Might be worth accessing your records and seeing what was written around time of original diagnosis and what was written more recently.

patients-association.org.uk...

Testing for PA

pernicious-anaemia-society....

Thread about tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

SACD

If your GP remains reluctant to continue your B12 injections, it may be worth discussing with them that delayed or inadequate treatment for B12 deficiency can lead to permanent neurological damage. In severe cases the brain and spinal cord may be affected.

Might be best to put any concerns about this in a short polite letter to GP and copied to practice manager. Always keep a copy....a paper trail is useful if a formal complaint is needed in future.

May be worth printing out this PAS article about SACD, sub acute combined degeneration of the spinal cord and passing it to GP.

Help for GP

1) PAS website has a page for health professionals. Maybe you could show this to your GP.

pernicious-anaemia-society....

You could also mention that your GP (and other health professionals) can join PAS as an associate member with no charge...

2) Does your GP know about Club B12?

Club B12 is a group of researchers and doctors who are looking into B12.

They have regular zoom meetings and have hosted a conference in UK.

club-12.org/

3) A good article to pass to your GP

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Here are two other articles about the wrong ideas that health professionals can have about B12 deficiency.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Some health professionals can become very defensive when they are challenged even if it is done politely. GP surgeries may become very protective of staff if they feel a complaint is possible.

Reviews of B12 injections

You may want to find out if your GP surgery or ICB(Integrated Care Board) or Health Board is currently reviewing people on B12 injections.

ICBs and Health Boards have medicine optimisation teams who are looking into ways to save money on what is prescribed.

See articles below on Reviews of B12 injections in UK.

guidelinesinpractice.co.uk/...

nhslguidelines.scot.nhs.uk/...

Have you managed to track down local B12 deficiency guidelines for your ICB/Health Board yet?

Local MP may be able to help you and MS in Wales, MSP in Scotland. Their websites should have a contact number/form.

News story about MP in Scotland who raised concerns about treatment of patients with PA

douglasross.org.uk/news/mor...

I fought for years to get treatment but in the end was forced to treat myself. I sincerely hope your GP will listen to you and read any letters sent.

I've written many detailed replies on the forum which may be worth looking at.