B12 and anaemia

[ronnie68]

Hi, i'm new here. I was feeling really unwell last year visited doctor in July and was diagnosed with pernicious anaemia and b12 deficiancey. I had loading doses and 12 weeks later first of what i thought were lifelong jabs. However my doctor did blood test in November which showed i had gone from 109 to 2000. He said i didn't need any injections at the moment to have another blood test in 12 months. So why am now feeling unwell again, went back to doctor, and am awaiting result of fbc and b12 blood test. I'm confused.

[Foggyme Administrator]

Hi Ronnie68. Hello and welcome.

Good grief. Your GP is talking nonsense.

You have a confirmed diagnosis of PA and the treatment is injections for life. No stopping. Because you have PA the cells in your stomach lining are unable to produce something called intrinsic factor. Without intrinsic factor B12 can no longer be absorbed by the body in the usual way so,the only way you can get B12 is from injections.

In denying injections your GP is failing to treat your condition in line with all guidelines (for life means for life - and a regular regime - the minimum injections frequency being three every three months.

Additionally, he is consigning you to a slippery slope whereby you become more and more unwell as the levels of B12 in your blood drop...which they always, inevitably will. This is why you are feeling unwell again.

Also - if you have neurological symtpoms, you should be on a much more intensive regime of injections to prevent the potential for irreversible neurological damage (after the loading doses you should receive an injection every other day until no further improvement - for up to two years).

The reason your serum B12 levels are 2000 is simply due to the fact that you have had B12 injections. All the guidelines state that once treatment has commenced, no further testing is necessary...unless looking for low levels - in which case more injections would be given.

In short...your GP should re-commence your injections immediately.

GP's are usually ill-informed about B12 deficiency and PA so I'm going to paste in some links at the bottom of this reply. They will take you to information that will help you to understand what you GP should be doing for you...and also give you more information about PA (quite a complex and tricky condition).

If you see your GP and he still will not re-commence your injections Martyn Hooper, Chair of the Pernicious Anaemia Society, may be able to intervene on your behalf (you have to be a member of the PAS). Contact details are on the PAS website - Martyn prefers to be contacted by phone - usually an answerphone kicks in but Martyn does return all calls (may be a couple of days later if he's busy or out of the office.

Finally, you've come to the right place for support and advice. Lots of lovely knowledgable forum members who will always try to offer help.

Put up new posts whenever you feel the need...or just pop I. To let us all know ho you're doing.

Take care...here come the links...😄

Oops...my links are lost...can't leave the page to find them or this reply will disappear never to be found. Will post this reply and then return and put links in a new reply...👍

[Foggyme Administrator]

And here's the links:

LINKS TO GUIDELINES AND INFORMATION.

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

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)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten... (Methylmalonic Acid – MMA)

stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)

ncbi.nlm.nih.gov/pmc/articl... (No Superior Forms of Cobalamin)

[ronnie68 in reply to Foggyme]

Thank you so much Foggyme. I tried telling doctor I thought that about the levels, as practise nurse who administers jabs said same as you, but he said "you have enough b12 for 2 years" !!! I will ring PAS on Monday, and i'll be back with an update.

[Foggyme Administrator in reply to ronnie68]

Good luck ronnie88. Some GP's are beyond ridiculous 😖.

Be interested to hear how it goes 👍

[Sleepybunny]

Hi ronnie68,

Are you In UK?

A long period without injections could lead to neurological damage.

I'd suggest contacting the PAS (Pernicious Anaemia Society) as soon as possible. They are sadly used to hearing about people having their injections stopped.

pernicious-anaemia-society....

PAS tel no [phone]

PAS office open from 8am till 2pm every day except Sundays and some holidays. there is an answerphone so messages can be left. May take a couple of days to get a reply.

They can sometimes intervene on behalf of members by writing letters.

Links below to stories on Martyn Hooper's blog about how PAS can help members.

martynhooper.com/2016/09/23...

martynhooper.com/2015/08/20...

UK b12 treatment

"was diagnosed with pernicious anaemia and b12 deficiancey"

"showed i had gone from 109 to 2000. He said i didn't need any injections at the moment"

PA requires continuous B12 treatment for life.

If you have PA/B12 defic with neurological symptoms the treatment should be more intensive.

You mention loading doses then an injection 12 weeks later. This is the standard UK treatment for B12 deficiency without neuro symptoms . I'd add that it is not standard to stop B12 injections for someone with PA.

If a person has B12 deficiency with neuro symptoms , in UK, they should get loading doses every other day for as long as symptoms continue to get better then once symptoms have stabilised they should get an injection every 2 months.

In UK details of UK b12 treatment can be found in

1) BNF (British National Formulary) Chapter 9 section 1.2

All UK GPs have access to BNF. It's likely that your GP, if you're in UK, will have a copy on their desk or bookshelf or online access to it.

evidence.nhs.uk/formulary/b...

2) BSH Cobalamin and Folate Guidelines

This UK document came out in 2014. It's possible that your GP may not have read it.

The info on UK treatment is about a quarter through document. It mentions that PA requires injections for life.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines.

Next link is to a flowchart in BSH Cobalamin and Folate Guidelines. It clearly states that treatment is for life at bottom of flowchart.

stichtingb12tekort.nl/weten...

I am not a medic just a person who has struggled to get a diagnosis.

Unhappy with treatment?

b12deficiency.info/b12-writ...

citizensadvice.org.uk/healt...

HDA patient care trust

HDA pct is a UK charity that offers free second opinions on medicla diagnoses and treatment.

hdapatientcaretrust.com/

[ronnie68 in reply to Sleepybunny]

And yes I am in the UK.

[ronnie68]

Thank you I will contact them. When I was given my first b12 jabs. I also had 3 month course of iron tablets. Am told my iron now at normal levels, but as I said I asked for more blood tests and am awaiting results.

[helvella in reply to ronnie68]

The longest story in the book seems to be:

1) Patient has iron deficiency.

2) GP prescribes iron (e.g. ferrous sulphate).

3) Patient has improved iron levels (however that is determined).

4) GP no longer prescribes iron.

5) Go to 1)

If you are deficient in iron, then if nothing else changes but you have a course of iron supplements, then when you stop taking them you will again become iron deficient. May take a short or a long time. Quite possibly it gets missed for weeks, months or years before it is noticed again (by someone who can test and prescribe).

Of course, if something changes, such as a significant and permanent change to diet, or treatment of some other issues, then you might not get into the repeated cycle of iron deficiency.

[ronnie68 in reply to helvella]

Thanks Helvella, my iron levels have dropped a few times over last 5/6 years, and I was given ferrous sulphate as you said my levels went back up and I just carried on for another year or so until I felt I had to go back to doctors, but after years of them telling you your levels are normal now.. it makes you feel like you are hypochondriac.

[helvella in reply to ronnie68]

The Patient Information Leaflet for one randomly selected Ferrous sulfate tablet says:

Adults and the elderly

Treatment: 2-3 tablets a day in divided doses.

Prevention: 1 tablet a day.

medicines.org.uk/emc/medici...

That means, if you are iron deficient, you can be prescribed two or three tablets a day. When you are no longer actually deficient, then you can, or should, remain on one tablet a day to stop you becoming deficient again.

Of course, if there is a clear explanation as to why you were temporarily deficient, you might not need long term preventative treatment.

You also have other options than Ferrous sulphate - including haem or ferritin supplements, liver, and so on.

[ronnie68 in reply to helvella]

I was on 3 tablets a day for 3 months then stopped. I will have to find an alternative as they really upset my stomach, I try to eat healthy and eat liver red meat green veg etc. so I don't know

[humanbean in reply to ronnie68]

Just wanted to point out that in the UK prescription-strength iron supplements can be bought online without prescription or in some pharmacies without prescription. Boots can be awkward and refuse to sell, but I've managed to buy from Tesco and Lloyds without issue.

[ronnie68 in reply to humanbean]

Thanks. I didn't know that.