Help needed

[Monbretia]

My GP who had allowed 6 weekly injections has left the practice. I had a call with new (to me) GP very unhelpful said I had dangerously high levels of B 12 dismissed my symptoms saying could have any number of other causes. When I collected script for ampoules she has changed frequency to 3 monthly! Advice please should I accept this & start si don't feel any docs.in practice sympathetic seem totally ignorant about pa

[wedgewood]

Yes you are right about the total ignorance. It’s a terrible burden for us . Just shows the ignorance when the doctor said that high levels of B12 in the blood were dangerous ,Just down load the information from stichtingb12tekort.nl. ( B12 deficiency foundation ) That will explain the nonsense of the doctors statement . You coukd also ask where that evidence came from ( not possible -there is none ) High readings of B12 are only dangerous if you are NOT supplementing with B12 . The doctor should know that. At the moment doctors are using any pretext to avoid giving B12 injections . Ask to see your notes when you were first prescribed B12 injectionsIf you have Pernicious Anaemia, you need sufficient injections to keep B12 deficiency symptoms at bay and they must be FOR LIFE !

[wedgewood in reply to wedgewood]

You need to scroll down the page of that B12 site until you reach the bottom , and then click on the English articles . ( bottom left )

[Monbretia in reply to wedgewood]

Thank you

[Sleepybunny]

Hi,

I'm assuming you're in UK.

It's helpful to know if you're somewhere else as pattern of treatment and type of b12 used can vary from country to country.

Ignorance about B12 deficiency seems to exist everywhere....

I'll add more ...just tracking down links so check back later.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates that people can base own letters on.

The templates cover a variety of situations linked to B12 deficiency and there are links to lots of useful info.

Point 5 is about under treatment of B12 deficiency with neurological symptoms present.

Why write a letter?

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Keep a copy of confirmation as it proves they received letter.

I included a request in letters that a copy of letter was filed with medical notes.

My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.

Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.

Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.

Keep copies of any letters sent or received.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case it is needed in the future.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Advocacy Services that can help people with NHS Complaints

citizensadvice.org.uk/healt...

May also be worth talking to your local MP/devolved representative if you struggle to get appropriate treatment.

Have you considered joining PAS who can offer support and pass on useful info on PA?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No face to face meetings at moment.

PAS members can access leaflets/articles about PA and B12 deficiency from PAS website.

Some articles can be accessed by non members.

pernicious-anaemia-society....

PAS have an article "Treatment is for Life".

Pandemic

If you feel your treatment has been affected by pandemic, see links below and read comments under the articles.

PAS news items

pernicious-anaemia-society....

There is a PAS news item about contacting NHSE about treatment concerns during pandemic.

pernicious-anaemia-society....

B12 deficiency Info blog posts about treatment during pandemic.

b12deficiency.info/covid-19/

b12deficiency.info/blog/

Useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF link down page.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Do you have any neuro symptoms?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

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.

If yes to neuro symptoms, does your GP have a list of all your neuro symptoms?

In UK, there is a different pattern of treatment for those with neurological symptoms.

1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

"she has changed frequency to 3 monthly"

Both BNF patterns of treatment allow for maintenance jabs to be given every 2 months whether or not neuro symptoms are present.

GP can find this info in their BNF (British National Formulary) book Chapter 9 Section 1.2

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

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 - adults

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

See section for patients with "neurological involvement" if you have neuro symptoms, in above link.

NICE CKS

cks.nice.org.uk/anaemia-b12...

May be worth drawing your GPs attention to the increased risk of permanent neurological damage if you feel you are being under treated.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

"GP very unhelpful said I had dangerously high levels of B 12 dismissed my symptoms"

Sadly, it appears that your GP has some misconceptions about B12 deficiency. See links below.

In a similar situation, I would ask GP what was dangerous about high levels of B12 from being treated for B12 deficiency.

Misconceptions about a B12 deficiency

(from Dutch b12 website so ref ranges and units of measurement may vary from those in UK)

stichtingb12tekort.nl/engli...

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

(from Dutch b12 website so ref ranges and units of measurement may vary from those in UK)

stichtingb12tekort.nl/engli...

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

If you were already on b12 treatment, why was she testing your B12 levels?

See links below.

Testing B12 during treatment

(from Dutch b12 website so ref ranges and units of measurement may vary from those in UK)

stichtingb12tekort.nl/engli...

PAS article

Testing B12 during treatment

pernicious-anaemia-society....

See BSH Cobalamin and Folate Guidelines link in this reply. There is something about testing b12 being irrelevant once treatment has started in that.

Local Guidelines

If all else fails, some UK forum members choose to self treat. my personal opinion is that this is a last resort but I felt I had no other option.

I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, B12 books, B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.

See links below to a couple of them. I've written others as well which you might want to search for.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

I sometimes add more to a thread so check back tomorrow in case I've added something.

[Nackapan in reply to Sleepybunny]

Somehow missed tour post when I replied. You've covered so much .

When first ill I I couldnt manage to get through it all.

Totally overwhelmed.

Now really appreciate the font of information in you posts.

Thank you.

[Sleepybunny in reply to Nackapan]

Hi,

I just want to help people avoid what I went through...

[Nackapan in reply to Sleepybunny]

Yes. I'm trying to get it out there for more testing . To nip it in the bud. So many including me didnt get tested until damage done First ever test I was 57 . I've brought it to attention that if offering 59 + checks it should at least be done then.

Having worked in the NHS I've srill many contacts . Some have reached commissioning roles unfortunately many are now retiring.

There is still do much training needed for medicsl staff

I wrote to A and E too

Good on you.

[Sleepybunny]

Hi again,

If you're in UK, I suggest you track down the local guidelines on treating and diagnosing b12 deficiency for your area of UK and compare them with BNF. BSH and NICE CKS links.

It might help to explain the GPs reaction...sometimes GPs are constrained by local guidelines which do not always reflect what is in NICE CKS, BNF, BSH guidance.

I hope you are not in area mentioned in blog post below.

b12deficiency.info/blog/202...

I have put some of these local guidelines on the forum.

Here's a few of them.

Ipswich and East Suffolk CCG, North East Essex CCG and West Suffolk CCG

ipswichandeastsuffolkccg.nh...

Notts Area Prescribing Committee

nottsapc.nhs.uk/media/1330/...

Review date Nov 2021

Hull and East Riding Prescribing Committee

hey.nhs.uk/wp/wp-content/up...

Review date April 2021

Bath

ruh.nhs.uk/For_Clinicians/d...

Cambridge and Peterborough CCG

cambridgeshireandpeterborou...

Guidelines to be reviewed March 2021.

If you can't find guidelines for your area then look at the name of your CCG/Health Board and search online for (name of CCG Management of B12 deficiency or B12 guidelines).

For future reference..

Oral Tablets

There are moves afoot in UK to put more patients onto oral tablets. Cynical me suspects that this is a cost cutting measure.

Treatment with oral tablets may be okay for some but some UK forum members report that oral tablets are ineffective.

If this happens to you...come back to the forum for more support.

[Nackapan]

Dont worry if you havent a PA diagnosis .Ive not so probably got Ifneg.pa

I never had the intrinsic factor antybody test . Infact if done whilst on injections it can give a false positive. !! Also if negative does not mean you havent PA.

I've been told i need b12 injections for life going on the response from injections and finding nothing else wrong.

.I've not bothering to have an intrinsic factor test as dont want to stop b12 injections for it. Some have had 3 or 4 tests until a positive one only to still not get the correct treatment!!

A more definitive accurate test is needed. Many who have had a PA diagnosis hsve another test and its negative . That's how poor the test is

So write your Gp. Copy in the practice manager.

Ask for your b12 regime to continue .

Keep it brief.

At the very least you should get 8 weekly . Quote bnf guidelines. if you state neurological symptoms come back on a lower frequency.

I have a 2 weekly prescription that wasnt easy to get .

Just so you know doctors can and will prescribe in their patients best interests .

You dont need b12 testing once on injections

The whole point is keeping your levels high

Meanwhile buy some. I did that whilst the unnecessary fight was on and covid hit the world and everything uncertain.

Or simply state there was a mistake made on your prescription

Hope it goes well.

[Sleepybunny in reply to Nackapan]

"Just so you know doctors can and will prescribe in their patients best interests . "

Link about prescribing off license

gmc-uk.org/ethical-guidance...

[Sleepybunny]

A few go to the press although this may sour GP/patient relationship.

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

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

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

Check Twitter feed on B12 Deficiency Info blog as has some interesting stories.

b12deficiency.info/blog/

[Gill567]

Yep same here but worse. I'm in France and a new to me doctor has stopped my monthly injections because she insisted in me having a blood test which came back over 3000. I tried to explain that my level would always be high with having the injections but was just hitting my head against a brick wall. I've had enough to be honest as don't think I've got the strength to fight this all again as went through it years ago when we moved over here. The then doctor told me they didn't give b12 injections in France because it was old fashioned. It's such a long story and I've posted about it all before so I wont bore you again. This is my 2nd month without an injection so just waiting to crash.

[Monbretia in reply to Gill567]

Feel just like you so much effort. Last month I ordered ampoules from apo .de health am trying to get courage to inject would be great to be the one in charge for once. Maybe would be solution for you. I thought B12 injections over the counter in France ?

[Gill567 in reply to Monbretia]

Yep they are but need a prescription for the nurse to do them as don't think I'd have the bottle to to it myself. Bad enough the nurse doing it coz I hate needles. Also know that if I did & they checked my levels I would be on my own with everything as I'd gone against them. It was bad enough when I started taking a one a day multi vitamin coz they'd said France didn't do injections and they tested my level in a routine blood test and said they were massively too high. Ending up at a specialist who thought I'd been taking loads of pills and told me to stop them and I had become vegan as well so defo needed them. (I wasn't vegan or even veggie in the uk when they diagnosed me so not diet related). I really don't know what I'm going to do. You can buy the vials here and you can drink them as well as inject them so maybe I'll try that. I'm frightened to at the moment in case they check me again & find my levels are too high. Had enough of it to be honest. Awful isn't it!

[Sleepybunny in reply to Gill567]

Sorry to read you're having a hard time in France. Is it worth passing some of the articles I've linked to to your doctor?

[Kazania]

As you can see from all the other replies, this level of ignorance is widespread. I tried writing letters to GP for more frequent injections and got nowhere, so took the less stressful route of Self injecting and got my life back. I have benefitted greatly from this site, so if you need help from really well-informed people this is the place to come. Take care. 🙂