Pa

[Sally39]

I have been to doctors to have bloods done now they are telling me I should only have my b12 injection every 4 months now

[spacey1]

What did they base that decision on, Sally39? Do you know why you're deficient in B12?

If they based it on high B12 levels in your blood, and you've been having jabs, then OF COURSE your levels are high. They'll be high even if you have little B12 'available' for your system to use. My local lab wrote back to my GP that he shouldn't ask for repeats of B12 for people who were supplementing.

If you need your B12 more often than they are saying, I'd say to print off some of the useful posts from here, and ask the GP to reconsider. Otherwise, you may think about supplementing yourself, in whichever way you think best.

Lots of luck!

[Sally39 in reply to spacey1]

It was under that I know of now it is a little over so he said I had to have it every 4 months now I still feel tried a lot to

[clivealive Forum Support]

Do you have an actual diagnosis of Pernicious Anaemia Sally39 ?

[Sally39 in reply to clivealive]

Yes from the hospitail

[clivealive Forum Support]

If you have P.A. and neurological symptoms your injections should be (at least) every eight weeks

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

[Sleepybunny]

Hi,

I've assumed you're in UK. Some info may not apply if you're elsewhere.

"Do you have an actual diagnosis of Pernicious Anaemia Sally39?"

"Yes from the hospitail"

Have you considered joining and talking to PAS (Pernicious Anaemia Society)? In some cases they can intervene on behalf of PAS members who are not receiving correct treatment. At very least they can pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members from around the world. Lots of useful info about PA on website.

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left

PAS support groups in UK

pernicious-anaemia-society....

PAS support groups can be useful sources of info about helpful GPs etc.

If you're in UK, following documents specify UK recommended treatment for B12 deficiency (including PA).

BSH Cobalamin and Folate Guidelines

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

BNF (British National Formulary)

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

If you're in UK, your GP will probably have a copy of BNF on his/her desk. If they open it to BNF Chapter 9 Section 1.2 they can see recommended treatment.

NICE CKS

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

Standard UK treatment for B12 deficiency without neuro symptoms is...

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

For B12 deficiency with neuro symptoms, it is...

A B12 jab every other day for as long as symptoms continue to get better (could mean loading jabs for week even months) then a jab every 2 months.

Info for Health/Medical Professionals

There is a useful PAS article called "An Update for Medical Professionals: Diagnosis and Treatment" on PAS website. You would need to be a PAS member to access it.

pernicious-anaemia-society.... Update article is on Page 1.

Might be worth pointing out to GP that there is a section on PAS website for health professionals. Health professionals can join PAS for free as associate members.

pernicious-anaemia-society....

Neurological Consequences of B12 Deficiency including PA.

Might also be worth pointing out potential consequences of under treated PA to GP.

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Link about writing letters to GP about Under Treatment of B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Person who runs B12 Deficiency Info website can be contacted by e-mail and may offer support. Details on website.

b12deficiency.info/

I think your best bet is to speak to PAS.

Some UK forum members cannot manage on the amount they are given by NHS so some choose to take additional B12.

I am not medically trained.

[Sally39]

Yes I have been having b12 injections for just over a year had them every week at first then every 3 months now I have to have it every 4 months

[Foggyme Administrator]

Hi Sally39. I'm assuming that your doctor has reduced the frequency of your B12 injections because your serum B12 levels are in the reference range or even higher than the top of the range? If so, this is wrong.

Once injections commence, serum B12 levels are usually extremely high (because you've been injected with a massive dose) and then slowly drop until the next injection. In this sense, B12 levels do not behave in the same way as someone who draws B12 from the liver. So testing levels is meaningless and as such, guidelines explicitly state that testing once treatment has commenced is not necessary (unless looking for low levels - in which case, more B12 is needed). So...

Serum B12 levels do not Indicate how successful treatment is. Or indeed, how often you need injections. This means that your GP should be treating your symptoms, not your serum B12 levels. If your symptoms are returning before the next injections (and they are) this is a clear indication that you need more frequent injections.

Here's some information about the problems with serum B12 testing and testing following treatment:

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

No idea where your GP plucked out the notion of B12 injections every four months. This is not in line with any of the guidelines.

It's worth noting that if you have - or have ever had - neurolgical symptoms, following the six loading doses and then injections every other day until no further improvement, you should receive injections every eight weeks - whatever your serum B12 level is (see the third paragraph,down in the BNF document in the link above). For some, this is not enough to get and keep well. GP's who understand B12 deficiency do not have a problem prescribing injections at a frequency that suits an individual but sadly, they are few and far between. Many here are forced to top-up with sublinguals, sprays, or patches between injections...but this don't work for everybody. Some who have no other option (like me) self-inject B12 between surgery jabs because it’s the only way to function.

Might be a good idea to return to your GP, discuss the the return of symptoms following changes to your injections regime, and ask them increase the frequency of your injections. In other words, treat you in accordance with the BSCH and BNF treatment guidelines. Here's some links to those documents - good idea to print, highlight the relevant bits, and take to discuss with your GP):

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

onlinelibrary.wiley.com/doi... in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

In the meantime, you could try B12 boost spray (Holland and Barrett) or B12 sublinguals (Amazon) to see if they help. Though they don't work for everyone, you may be one of the lucky ones.

Good luck. Post again if you need any more help and let us know how it goes.

👍

[Sally39 in reply to Foggyme]

Thank you it’s helped me loads I will look into it

[Jumaz in reply to Foggyme]

Thank you! I've visited Health Unlocked today for exactly this information. I have injections every three months but after a couple of months I feel awful. I had a blood test, they said my levels are fine so refused to let me have injections more frequently. I knew this was wrong but now I have the information I need to explain why. Thanks again!

[Foggyme Administrator in reply to Jumaz]

Hi Jumaz. Very good to hear that you’ve found something to help 😀.

Best of luck with you GP and post if there's anything else you need help with.

👍

[Sleepybunny]

Hi,

"I'm assuming that your doctor has reduced the frequency of your B12 injections because your serum B12 levels are in the reference range or even higher than the top of the range?"

If Foggyme 's comment above is what doctor thinks then the summary of B12 documents in third pinned post on this forum has some useful info about further testing.

Article about Testing B12 during treatment from Dutch B12 website (English language)

stichtingb12tekort.nl/weten...

Safety of High Dose B12 treatment (English language)

stichtingb12tekort.nl/weten...

I am not medically trained.