6 B12 loading shots, then 6 month wait? - Pernicious Anaemi...

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6 B12 loading shots, then 6 month wait?

Tryingtofindhelp profile image

Hi all,

I’ve had my very first b12 loading shot today (after various back&forth with my GP for many years). I’m 23 years old, and have been told that my b12 levels are at 147. In my area the nurse said it should be between 180-1000, so I’m definitely below that.

I’ve been advised that I should be having 6 shots over the course of 2 weeks (now 3 due to availability on the doctors surgery half) and have been told that I would need to wait 6 months after my initial loading shots to then be tested again/to see whether I can have the b12 shots every 3 months. I’m just wondering if I’m being fobbed off? Or is it normal to wait 6 months to then be re-tested again? I’m not sure if they’re doing this due to my levels not being low enough to be considered ‘b12 deficient’ or if they somehow think that it is likely that my body will retain the b12 after 6 months?

They haven’t been overly helpful with providing the information, and with so much on the internet I think I’m getting slightly overwhelmed with everything I’m reading!! Symptoms seems to be similar to other posts I’ve read on here, extreme tiredness, dead/lethargic legs, dizziness, breathlessness, headaches, sensitivity to light, and starting to be quite forgetful/slurring my words (which is super frustrating as I know what I want to say, it just doesn’t come out like that!)

Any advice would be super helpful! Thank you :)

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12 Replies
Nackapan profile image
Nackapan

6 months! !

Bnf guidelines say with your symptoms every other day until no more improvements.

Then 2 monthly .

Go by your symptoms

Never heard of 6 months after loading doses.

Have you had your folate checked and vit D and iron?

Have you had a blood test for PA?

If you offered injections they must think you have an absorbtion problem otherwise would give tablets thrn test again .

Look at all the posts sleepybunny has posted with links.

Hope you get improvements

Tryingtofindhelp profile image
Tryingtofindhelp in reply toNackapan

I did think 6 months sounded slightly weird! But had nothing to back myself up on or argue back at it.. especially since it was such a huge step forward for them to allow me to have the initial six. :(

Will most definitely have to do some further reading around it! Folate, and iron were apparently fine, but I haven’t requested the specific numbers of that as trusted them saying it was okay. I’ll be ringing up tomorrow so ask for a printed out list of all of my results! I’m not sure if they checked vitamin D, but assume that would have come under a full blood test..? Very unsure! They tested for anaemia and said I didn’t have that, would PA have to be tested for specifically?

Thank you so much for the help/advice! Honestly is hugely hugely appreciated. :)

Nackapan profile image
Nackapan in reply toTryingtofindhelp

Vitamin d normally has to be added to blood form. I had parietal cell antibody test. Some have intrinsic factor antibody test for PA. Both have flaws. I also had celiac tested. I tested negative and didnot have megoblastic anaemia. Severe b12 deficiency though. Still on 2 weekly b12 injections. Repair takes time.

I hope they've tested already before injections started . Your blood rebsults form will say. Quote

Bnf guidelines .

TC

Midnight_Voice profile image
Midnight_Voice in reply toNackapan

I wish I hadn’t heard of six months after loading doses, but this, pointlessly and incorrectly, is what our previous doctor did.

Yes, Tryingto findhelp, you are being fobbed off, as we were.

But we knew no better then, and trusted our doctor, fools that we were.

Don’t stand for it.

clivealive profile image
clivealiveForum Support

Hi Tryingtofindhelp

Do you eat animal products? Meat, fish, seafood, eggs, dairy etc?

Tryingtofindhelp profile image
Tryingtofindhelp in reply toclivealive

Hi! :)

Yes, eat all kinds of animal products. Not a vegetarian or anything like that, I would say I have a pretty healthy/balanced diet. However I would say after eating a lot of the time it makes me feel worse than what I did before! Very lethargic/tired after most meals, but not sure if that’s something directly related to this or not!

clivealive profile image
clivealiveForum Support in reply toTryingtofindhelp

I add a drop of Lime juice in a glass of water with meals to increase acidity - you may find that helps your digestion a little.

1healthy1 profile image
1healthy1

I had B12-141 (close to your test result) and confirmed Megoloblastic/Pernicious Anaemia with similar symptoms to you Tryingtofindhelp. B12-180 is low frustrating that it is considered normal. It’s CRUCIAL to your long term health that you are treated appropriately now. Get a copy of the official guidelines as suggested (sleepybunny) to show your GP. You have neurological symptoms so it should be loading doses ‘until the symptoms have gone’ and then a single maintenance shot every 1-3 months as you need to keep your symptoms from returning. As mentioned by Nackapan - and worth repeating here. Hope you get a copy of your blood test results for reference AND confirmation that you ‘do not’ have Megoloblastic Anaemia/Pernicious Anaemia. If you do the injections are for life. Eventually you may prefer to self inject. I opinion that you cut back on your physical activity particularly exercise that increases your symptoms until you are healthy again. Your body is telling you it’s not coping and it will get worse if you don’t take precautions now. I recommend the Pernicious Anaemia Society to you if you are not already aware of it. One way or another you are getting a lot of information that is overwhelming now but shortly it will all make sense to you. All the very best to you on your journey back to health.

Gambit62 profile image
Gambit62Administrator

assuming you are based in the UK

suggest you go back to the GP and ask to be treated in accordance with NICE and BCSH guidance.

As you aren't vegetarian/vegan you have a B12 absorption problem. Unless the cause is treatable (eg SIBO) you will definitely be should be on injections for life - maintenance doses would be every 2-3 months according to the guidelines - 2 months if you have neurological symptoms. Retesting serum B12 isn't required, ie treatment shouldn't be based on serum B12 results post loading shots.

[In theory SIBO could be treated and then you wouldn't need any further treatment but that's rather simplified and it doesn't always work that way.]

I have heard loading shots and maintenance doses 6-12 months as treatment for vegans.

If your GP is basing treatment on a negative IFAB test then they need to be aware that this test is extremely insensitive, giving false negatives 40-60% of the time - so a negative is a long way from ruling out PA as the cause

onlinelibrary.wiley.com/doi...

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

fbirder profile image
fbirder

I'll bet you live in Gloucestershire. They ignore national guidelines for their own way of seriously under-treating people with PA.

Brainfoglady profile image
Brainfoglady

Yes you are being fobbed off and it is dangerous to leave you like that

You have neurological symptoms and need frequent B12 injection.

Send a letter to your dr with all your symptoms- create a paper trail.

Take someone with you to your appointment for support and as witness.

Print off the guidelines in the B N F/N I C E guidelines to show him.

Good luck

Sleepybunny profile image
Sleepybunny

Hi,

If you're in UK, have a look at following documents which give details about treatment and diagnosis of b12 deficiency.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

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

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

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

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Also plan to read " "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Copies of these books may be available from local library service.

If you have a PA diagnosis or suspect PA, worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Have you been tested for PA?

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Have you been tested for Coeliac disease?

If you were tested in past, did GP do both recommended tests eg tTG igA and Total IgA and were you told to eat plenty of gluten in more than one meal per day for several weeks before blood tested?

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

H Pylori infection?

patient.info/digestive-heal...

Any exposure to Nitrous Oxide?

gov.uk/drug-safety-update/n...

Diet,

I wondered if GP assumed your problems were diet related. Do you eat plenty of b12 rich food eg meat, fish, eggs, dairy, foods fortified with b12?

If yes , low b12 unlikely to be due to diet and more likely to be due to absorption problem in gut.

Neurological Symptoms

You mention several symptoms that would usually be considered neurological eg dizziness, memory issues.

Do you have other neuro symptoms?

Failure to treat you adequately could lead to permanent neurological damage including spinal problems.

In UK, people with b12 deficiency with neuro symptoms are supposed to have more intensive treatment. See NICE CKS, BNF and BSH links up page.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Have you been referred to a neurologist?

To a haematologist?

See NICE CKS link which suggests GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.

If gut symptoms present, have you been referred to a gastro enterologist?

Link about writing letters to GP if under treated for B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

Like fbirder I wondered if you are in Gloucestershire.

Local Guidelines

Some areas of UK are using local guidelines on the treatment of B12 deficiency which have not been updated for many years. Worth tracking down local guidelines for your area of UK and comparing them with national guidelines eg BNF, BSH and NICE CKS.

I am not medically trained.

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