Doctor not reinstating b12 injections - Pernicious Anaemi...

Pernicious Anaemia Society

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Doctor not reinstating b12 injections

Dragon_mum
Dragon_mum

So been to doctors today to discuss my recent blood test and intrinsic factor antibody (came back negative)she’s happy with my b12 level of 532 so is not willing to reinstate my injections,she just told me to continue with my oral b12 supplement and have a blood test in a months time. Said to monitor the tingling in my legs/feet,pins and needles, breathlessness etc and said if I still have it in 2 weeks to call them again.(I’ve had these for 5 weeks so far) is the advice about right and should I continue with the tablets and retest as advised?

18 Replies

No.

Once on injections testing is not necessary

On injections your levek is not high.

It should be about symptoms and your response to injections

How often do you usually get them?

What was your initial level that the decision was made to start injections?

Did your doctor cone up with another explanation for symptoms?

Were your folate levels done?

Vitamin D . Thyroid. Iron panel including ferritin. ?

What do you think ? Have you tried high doses b12 tablets before and been no good?

Look at the links sent on yout last reply.

Do write in. Do insist on getting them back. List symptoms . List what b12 alleviates . Ect

Dragon_mum
Dragon_mum in reply to Nackapan

My b12 levels were 112 in may 2018 and they are now 532 feb 2021.my last injection was November and I had them every 12 weeks after my initial 6 loading doses.

I told them my levels shouldn’t be rechecked and she disagreed,she dismissed anything I tried to tell her and told me because my IF came back negative it can’t be PA which I know the test isn’t accurate so that cannot be ruled out.

She was baffled about what could be causing these symptoms but she said all my other blood results were normal but that these symptoms were not b12 related.

Serum TSH level 0.76 mu/l

Serum vitamin B12 532 ng/L

Serum folate 11.2 ug/L

Serum ferritin 28 ug/L

I can’t see vitamin d or iron levels on there so would it be worth requesting tests? She made me feel like I was making symptoms up because she checked my oxygen levels today and my reflexes and they were all fine.

Gambit62
Gambit62Administrator in reply to Dragon_mum

suggest you point your GP to the BCSH guidelines on diagnosis and management of cobalamin and folate disorders. This discusses the limitations of various test in some detail.

It says this about negatives on IFAB test (emphasis added)

IFAB is positive in 40–60% of cases (Ungar et al, 1967), i.e., low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA).

Gambit62
Gambit62Administrator in reply to Gambit62

If you have neurological symptoms and they are getting worse you should be switched back to injections

b-s-h.org.uk/media/18275/bs...

Nackapan
Nackapan in reply to Dragon_mum

Well I would wrote saying you are getting worse .point out on injections your levels should be kept high.

Sounds as though tiu be having more . 8 weekly at least. Not stopped.

Discuss your iron results:

I had symptoms with a ferritin of 29. Breathlessness being g one and shaking another.

They went when eventually ferritin over 4o

Iron is complex but do discuss this with your doctor.

Compare with an earlier test

Iron levels should all be done and interpreted by the doctor

You know your body.

You've all the information now

to fight your corner.

Hi,

Perhaps you could show/send your GP this PAS article?

Testing B12 during treatment

pernicious-anaemia-society....

Another article about testing b12 during treatment

stichtingb12tekort.nl/engli...

Should be something about testing B12 levels during treatment in UK document below.

BSH Cobalamin and Folate Guidelines

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

"she dismissed anything I tried to tell her"

If your GP is dismissive, it might be worth putting your concerns into a brief letter to GP.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Above link has letter templates covering a variety of situations linked to B12 deficiency.

Some info will be specific to UK.

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.

CAB NHS Complaints

citizensadvice.org.uk/healt...

In UK, may be worth talking to your local MP/devolved representative if struggling to get appropriate treatment.

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

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society.org

There is a helpline number that PAS members can ring.

There is more info that may be useful in my reply on your other forum thread.

I am not medically trained.

Get a new doctor who listens to patients, doesn’t think she knows everything and is curious and compassionate enough to want to learn something she clearly knows little about. Keep looking until you find the treatment you need. Good luck!

What a distressing experience for you. Glad that you have had such good responses . I really think that you should get a different doctor . The arrogance of your doctor dismays me . She should know the guide lines ,which she obviously doesn’t . I think you will get more distressed if you don’t change doctors , or even surgeries if you think that that attitude prevails there . I know it’s daunting to do that , especially if not feeling well.

I gave up in the end after failing to get proper treatment , even after a positive Intrinsic Factor test ( had to go to a private G.P. as my doctor would not do it ) So I self-inject weekly and keep well , and don’t go to the doctator any more. I’m not suggesting that you do that . But there has to be a way out of your horrible situation. Very best wishes to you .

I went through the same thing. I don’t like self injecting so I found a doctor here in Japan who will inject for me if I being my own b-12. I have neuro symptoms like you and they get worse. I am getting them twice a month and that is not even enough so I probably will need to self inject. Neuro symptoms are horrible and my levels were about what yours were but I do have high IF antibodies and low IF. So, even with the diagnosis of pernicious Anemia I had to beg to receive 1000 MCG per month. Now I order from an online pharmacy and I bring my ampoules to another doctor so that I get two shots a month. However, I agree with everyone here that that is not nearly enough when you have neurological symptoms. I have a lot of problems with my hands. I also have a constant buzzing in my feet. I have been to two neurologist and they have ruled out MS as well as every Nuro muscular condition. However the neurologist do not acknowledge pernicious anemia.I noticed about 72 hours after my shot I have a really good day. When I was getting my loading shots and the weekly shots my neurological symptoms disappeared but then they came back. All the best.

Good advice given. However if you cant get GP Surgery to be sensible over this you need to protect yourself from long term damage so you may need to buy your own ampoules and learn to self inject........the NHS seems to have a policy these days of denying treatment for chronic conditions untli the patient is extremely ill.....all a false economy but sadly they don't see that!!

On top of thet many GPs are incredibly ignorant around optimal treatment for PA or B12 deficiency and will insist on a protocol of insufficient injections. Neurological should be every other day until no further improvement.

My lovely GP agreed to daily after I saw a nhs neurologist and let me self inject which is very helpful but sadly my GP has now retired so am expecting trouble over this. Sorry to be so negative but you will need to politely stick to your guns.......

Idiot doctor!

Who gives a flying fig what your numbers are. She needs to treat your symptoms. Especially as you have symptoms of nerve damage!

Insist you get treated according to the British National Formulary for somebody with neurological symptoms - injections three times a week until there is no further improvement in symptoms. Then injections every 8 weeks.

Also say that you want a referral to a neurologist.

Hi again,

Some more useful articles....

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...

See section for those with "neurological involvement" in above link.

You could include this section in any letter you write to GP.

NICE CKS

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

BSH Cobalamin and Folate Guidelines

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

It's possible that the GPs at your GP practice are being constrained in the treatment they can offer patients by local guidelines.

Each CCG/Health Board and NHS Hospital Trust in UK will have its own local guidelines on treatment and diagnosis of B12 deficiency.

I recommend you track down the local guidelines for your area of UK and compare them with the links above .

CCGs England

nhs.uk/servicedirectories/p...

Health Boards Wales

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

Health Boards Scotland

scot.nhs.uk/organisations/

Health Boards Northern Ireland

online.hscni.net/hospitals/...

If you struggle to find your local guidelines by an internet search then you could try submitting a Freedom of Information request (FOI) to CCG or possibly your GP practice.

Put Freedom of Information into the search box on CCG website.

Another possibility is asking your local MP to help you track them down.

Some local guidelines are in need of updating and some have been updated but in a way that is unhelpful.

I hope you are not in the area mentioned in blog post below which has guidelines that appear to put most patients onto oral tablets.

b12deficiency.info/blog/202...

If your GP says that they have to stick to guidelines, you may want to point out that GPs are allowed to prescribe off licence if they feel it is in patient's best interest to do so. See link below.

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

You already have neurological symptoms.

You could include a symptoms list in any letter you write, especially a list of all neuro symptoms.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

NICE CKS list of symptoms of B12 and Folate deficiency

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.

Without adequate treatment, there is an increased risk of permanent neurological damage including damage to spinal cord.

You could draw your GPs attention to this. See links below.

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....

Another article your GP may find interesting....

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.

PAS news item about contacting NHSE if you have concerns about treatment

pernicious-anaemia-society....

Another PAS news item about BSH guidance on B12 treatment during pandemic

pernicious-anaemia-society....

Cherylclaire
CherylclaireForum Support

Agree with all of the above, but would like to add that while your ferritin probably is in range (13-150 ug/L for example), it is low and would be more beneficial-and less likely to cause any symptoms above 60 ug/L. My GP recommended this level, my Oral Medicine consultant (burning tongue and angular cheilitis issues) preferred 80 ug/L -although it can take a while to get there and stabilise.

This would not explain your neurological issues though- your GP should refer you to a neurologist, and recognise B12 deficiency symptoms when presented.

Serum ferritin 28 ug/l (normal range 12-250)

Cherylclaire
CherylclaireForum Support in reply to Dragon_mum

I'd look at trying to improve that even if GP doesn't seem interested.

Thank you I will look at what will help.

Cherylclaire
CherylclaireForum Support in reply to Dragon_mum

I know this is a difficult time for you, but it really does help if you can read some of the links above, maybe highlight or take notes. Bit at a time.

So sorry that you are having to fight so hard for medical help.

Thank you everyone for the info and advice,I will not be giving up either by getting answers or taking things into my own hands

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