Finally diagnosed, but next steps unc... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

Finally diagnosed, but next steps unclear

Onefish profile image
20 Replies

Hi, newbie here.

I've felt like crap since last year. A health check had my B12 at about 250 with folate just below the NHS bottom range around December 2022. I was told it was ok, not to worry, I didn't have symptoms blah blah.

A few months ago I started to get tingling in the right hand (I say start, it had happened on and off for a year but I put it down to rsi or something) but because B12 was in my head I asked for more tests.

B12 was still hovering in the 250 range and they told me to take folate supplements and "you'll be fine." And anyway, B12 is bilateral and you've only got it on one side etc.

I just "felt" something wasn't right - brain fog, forgetting words, fatigue, and then my legs started to burn (bilateral this time, go me) at night.

So two recent tests - B12 had dropped to 204, latest one it's dropped again to 198 and finally - FINALLY - the diagnosis of deficiency came and I'm also VitD 35 so was told to take a supplement of 2000iu per day.

So to get this far I've had to go private which annoys me greatly. I have symptoms, what the hell, why didn't my GP say something? Anyway....

tl:dr I've had a mass of tests, like everything - minerals, immunology, tests for coeliac, the whole lot (including Active B12) but I can't see the doc for another two weeks so I don't know the full results, only that B12 is 198 and D is 35. And prior to the tests he told me to stop all supplements, perfectly reasonable obvs. However, now the b12 is in he said to start supplementing, but this came via his receptionist in an email as he was unavailable and I didn't have an appt so it was a bit vague.

Can I just continue with the 2000ui D and add in a spray (I've got Better You methylcobalamin 1200 daily oral spray), or should I also add my original folate supplements as well which I'd stopped using prior to the tests? Slightly perturbed that my level has suddenly dropped like this but I can take this up with him in a fortnight.

Any advice very gratefully received. I could go get a shot from a salon in the meantime if need be I guess. Meh.

Written by
Onefish profile image
Onefish
To view profiles and participate in discussions please or .
Read more about...
20 Replies
Onefish profile image
Onefish

in case it's not clear, I think the supplementing is only for the next two weeks until I can talk to him. Kind of a "can't do any harm" approach. I'm hoping he recommends shots when we go through everything.

wedgewood profile image
wedgewood in reply toOnefish

It’s important to find out what is causing your vitamin B12 deficiency

Has that been discovered ?

The reason for your deficiency will dictate the treatment .

The most common reason for B12 deficiency is Pernicious Anaemia , which is an autoimmune condition. But there are others .

Onefish profile image
Onefish in reply towedgewood

The amount of tests that have been run were pretty extensive so I really hope that I'll have some kind of answer in a fortnight. Unfortunately he's on leave, hence the delay but he is going to go through it thoroughly when he's back. One or two are outstanding (mineral counts I think, maybe iron too) so he' waiting to get the full picture before diagnosis.

I think the instruction to supplement was because the tests are now done and he knows there is a b12 deficiency even though we don't know why (yet). So if there's anything I can do in this two week period I'm thinking I may as well, I just don't know what.

wedgewood profile image
wedgewood in reply toOnefish

There is absolutely no harm in trying out the oral/nasal spray , Definitely keep taking the vitamin D and folate . I do hope that your GP understands B12 deficiency . You must let us know how you get on . We will be interested to hear .

Onefish profile image
Onefish in reply towedgewood

Thank you, Wedgewood

He’s a specialist haemotologist so hopefully he’ll know what’s going on!

Will try the supplements then.

When I get my results/diagnosis will post ‘em here

Nackapan profile image
Nackapan

The cause has never been found for me.I was on no medications .

Had no operations .

Have no other health problems to date.

I would check if you've had the Intrinsic antibody test.

It's best done before any supplements oral or injections.

It picks up about 50 % of those with PA.

Some have several tests before positive or have it done privately as seemingly only done once on the NHS.

I was not given this test.

So 'assumed ' PA as my diet included lots of b12 .

Was asked to have it 3 yesrs into b12 injections.

As didn't trust it wouid jeopardise my b12 Injections if negative I rang for a consult.

Told not to have it.

My treatment would continue as it clearly was working and nothing else found to treat.

Whether proved PA of not there is still alot to be proved researched about the stages of b12 absorbtion and where it can go wrong.

Some doctors believing once 'replete ' we can then use stores from liver and all well .

Wrong !

The symptoms need treating.

I tried a few drugs to no avail .

Made me worse after a few days of respite.

If dietary or slowed absorbtion/ Low b12 in diet oral b12 supplements and/ or a change if diet should suffice .

Seen this with a friend and my sister and husband.

If an absorption problem.

Symptoms dictate.

Symptoms just as severe without a formal diagnosis

B12 injections are needed.

PA is the most common cause but we haven't a definitive blood test.

Bit of a lottery .

Worth doing but you may still havd PA if test negative.

Main thing is :

If serum b12 low .....treat

If symptoms present but b12 in range treat

Proof is the clinical response to b12 treatment.

Very few woukd opt for b12 injections unless needed. .

Good if a cause found .

My diet did not change .

On no medications

My trigger was the menopause.

Only proof .

Low b12 serum blood result.

The only thing that has given me any improvements is b12 injections.

It's management not a cure.

So I would check if the IFAB test done

Then as you say try supplements.

If folate low treat b12 first.

B complex

Or a multuvit

Definitely start vit D

Get a print of your blood results

Often iron, folate vit D can go low too.

Hope all goes well

Onefish profile image
Onefish in reply toNackapan

Thank you - yes, GP ran IF test in May and it was negative. I’d be very surprised if the haemotologist hadn’t done it this time as well - he said that my previous result proved nothing as you can get false negatives so he’ll have run it again. He’s run active b12 too but I’m waiting to speak to him end of the month to get the result of that. So looks like it’s safe to spray away tomorrow.

wedgewood profile image
wedgewood in reply toOnefish

It’s a very good sign that your GP knew that a negative IFAB test proved nothing — Excellent - Most GPs don't know that .

Also many think that once you reach a high level of B12 with injections . they will stop your injections! Lucky you for finding a knowledgeable GP.

Nackapan profile image
Nackapan in reply toOnefish

Sounds like you are in good hands.

A haematologist who ran an active b12 test....wow

Only heard of private tests .

Also knows s negative IFAB doesn't rule out PA good.

Mixteca profile image
Mixteca in reply toOnefish

Has he also done homocysteine, serum & urinary MMA and parietal cell antibodies (GPCA)? These need doing before B12 treatment starts.

Onefish profile image
Onefish in reply toMixteca

I'm not sure, Mixteca. All I know is that I had 10 (yes, 10) vials of blood taken and the list on the phlebotomy sheet had ticks all over it. I asked the nurse what was being done and she said "immunology, heart, minerals, pretty much everything". When I spoke to him earlier he'd said iron, magnesium and a list of minerals and vitamins I'd never even heard of.

Narwhal10 profile image
Narwhal10

Hi Onefish,

Welcome.

You are on the start of your journey, it is a bit of a jigsaw trying to work out our own personal biochemistry and cause of B12 deficiency.

It is worth considering taking a B complex. I did put up a post how all of them are needed at cellular level. With exception of B6, they are water soluble. So we excrete excess out in urine.

Keep a symptoms tracker because all of us have our own weird and wonderful symptoms.

Keep a food diary, you may start noticing patterns, food you are craving, food you have gone off. For example, I used to love cucumbers. I now turn my nose up just at the mention of it. You will also notice your appetite.

Lastly, your output, urine and I always break the poo taboo. Note frequency, diahorrea, constipation and how healthy your stools are.

pediatricsurgery.stanford.e...

Sorry, I know it is Paediatric (children), although, it is Stanford School of Medicine, for a reason.

You are building up a better ‘clinical picture’. Our symptoms can be vague and similar to other conditions which can ‘confuse’ doctors.

I know they can feel rather helpless when a patient states, ‘I am tired all the time’. However, by being ‘proactive’ you will be helping them understand what you are experiencing.

Not a doctor. 🐳

Onefish profile image
Onefish in reply toNarwhal10

Thanks Narwhal, now you mention it, I do get food cravings!

Litatamon profile image
Litatamon

Not a doctor but....

When my vitamin d was low (7.6/19) a naturopathic doctor had me do 10 000 iu/day for a month & then 5000 iu/day for two months. And then retest (important because high amounts can be hard on kidneys and heart).

It worked. Went up into the 70s.

2000 iu is probably never going to get you there, with such a deficiency. It is more of a maintenance dose.

All the best.

Narwhal10 profile image
Narwhal10 in reply toLitatamon

I will honest and say ‘I do not know.’ There is some ‘stuff’ I am knowledgeable about but there is a huge amount I do not.

I would never want any harm to come to you from giving incorrect advice.

😘

Onefish profile image
Onefish

Just to be clear, it's not my GP doing these tests, I had to go private which I was lucky enough to be able to do on my partner's work insurance otherwise I'd never have been able to afford it.

To be fair, my GP DID run the IFA test, but apart from that it was a standard FBC, folate and serum b12 test. I had symptoms at the time but because the range was just about within "normal" no action was taken. It's only because I'd had enough of the unexplained brain fog, lack of concentration, crushing fatigue and those burning legs that I thought no, this isn't right. So the guy I'm seeing now is private, hence the Ab12 tests and the knowledge about negative IFAs. No one mentioned testing for coeliac as well until he did - I had no idea the two were potentially related. The GP did not test VitD.

I've not been lucky with my NHS GP at all - it sounds very similar to a lot of experiences I've read about on here. If it's within range, go away. If you're fatigued, take some anti depressants that will help you sleep. Brain fog - well, probably menopause. I mean yes, that is a symptom of menopause, but my HRT is working as it should and my oestradiol levels are good (I've had them checked). We even tried testosterone for that - no change, which there wouldn't be because if it's b12 causing the brain fog testosterone won't help.

I'm very fortunate that I have access to private healthcare via a work scheme, otherwise I'd be getting nowhere.

Nackapan profile image
Nackapan in reply toOnefish

Even private doctors know little about b12 as most are NHS doctors or trained in the NHS.So to find someone that knows more a real bonus.

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

A few links to get you started.

It's possible that some may have details that could be upsetting.

Link about "What to do next" if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

How to write letters to GPs about B12 deficiency

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum. It is open to people worldwide and people do not need to have a PA diagnosis to join.

Testing for PA

pernicious-anaemia-society....

Two useful B12 books

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

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

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

Very comprehensive with lots of case studies.

Local B12 deficiency guidelines

One thing I urge UK forum members to do is to track down the local B12 deficiency guidelines that your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland is using. GPs will probably refer to this for diagnosis and treatment advice.

If you can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a copy of or link to them.

Some of these local B12 deficiency guidelines are not helpful. I hope you are not in the UK area discussed in link below which has a poor reputation on this forum as to how B12 deficiency is managed.

b12info.com/gloucestershire...

NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

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

NICE (National Institute for Health and Care Excellence) is currently developing new B12 deficiency guidelines to be published in 2024.

nice.org.uk/guidance/GID-NG...

nice.org.uk/guidance/indeve...

There are forum threads about the new guidelines.

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

Many UK forum members have met health professionals with a poor understanding of B12 deficiency.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Some UK forum members turn to self treatment is NHS is not enough for them.

Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some people and some as a last resort try self injection (SI).

I've left some useful links on the thread above yours "tingling hand and feet".

Lots more useful info on pinned forum post "Various PA/B12D resources.

Pinned posts are on right of screen if on computer.

Apologies for a short reply but tired out today (normally I'd write more).

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

Onefish profile image
Onefish

oh my goodness thank you so much!

MrJustatip profile image
MrJustatip

Hello Onefish. My offering is the following. Have you ever seen the movie "The Truman Show" starring Jim Carrey? It's kinda like that with people who have Vit B deficiency and one day wake up and realize that doctors know barely anything about B12. If you have not had an IF test (Intrinsic Factor), my advice is to have one to rule out pernicious anemia due to blocking antibodies, etc. Read up on that and it's not all that difficult to understand. It's important because I now must have shots for the rest of my life since I can't absorb Vit B12 by oral, pills, sublingual, etc. I can take all the B12 tablets I want and can never absorb any of it. You need to know if it's OK for you to take oral B12. As for Drs, they're like trying to eat soup with a fork. Very useless when it comes to Vit B12. The only thing they're really good at is growing a big head. All the stuff you are suffering from is all over the internet or books and you probably are more educated about B12 now then any Dr is. A couple books for you: Could it be B12 by Sally M. Pacholok and Jeffrey J. Stuart and What You Need to Know About Pernicious Anemia & Vitamin B12 Deficiency by Martyn Hooper. Mr. Hooper is the one who founded this very forum.

Good luck, MJAT

Not what you're looking for?

You may also like...

Advice for next consultant visit

I was referred to an endocrinologist 5 months ago due to a range of issues including extreme...
rosaespanola profile image

Updated B12 and folate results

Hi all, I have posted a couple of times before but I have just got updated blood results- GP has...
-___- profile image

Next Steps

Hello Everyone, I'm sure you've heard this story many times but your advice would be very much...

Confused B12, Folate

I read a post on the thyroid group that until B12 is high that folate should not be supplemented....
LynneG profile image

B12 deficiency - next steps

hi all! I was diagnosed with ME/CFS back in 2016 and had my bloods retested yesterday to rule out...
AJackson21 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.