Treatment for low Vitamin B12 88ng/L ... - Pernicious Anaemi...

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Treatment for low Vitamin B12 88ng/L and low serum folate

1966sll
1966sll

Hi, new to this forum however just looking for some advice regarding my recent discovery of low B12 88ng/L and Serum Folate 3.0 ug/L (both classed as "abnormal" on my GP test results). All other bloods normal.

Symptoms starting roughly 2 years ago experienced increasing weakness/lack of energy and motivation to do anything, occasional muscle weakness and putting zoning out of conversations and the inability to focus to be a factor of my B12 reading.

I'm a full-time university student and 22yr old so put my exhaustion down to this, however, decided to get my bloods done to make sure.

Family history includes a cousin who has an absorption problem therefore is on life long B12 injections.

After discussing this with my GP, it was decided the best action was oral Cyanocobalamin and Folic acid tablets for 6 weeks during which I will have my Intrinsic Factor Antibody tested for PA and Celiac screening (have no gastric problems, stomach pains etc so would be very surprised if it was this).

I guess my question is - I am not a vegetarian/vegan and healthy otherwise therefore could this still be a dietary issue and would my B12 really be this low due to an inadequate diet?

It was argued it's not "best practice" to jump straight to B12 injections, I was wondering whether you guys agree as there are no negative associations with the intramuscular injections, is best practice not to treat symptoms as quickly and efficiently as possible for the patient?

Only asking as feel pretty lousy right now, no motivation to leave the house or do anything really. Just interested on other people's thoughts on this?

Thank you!

18 Replies
oldestnewest

Mine was cause by 2 things: vegetarian gone vegan along with omeprozale which causes malabsorption. Anyway, I took the subliminal methylcobalamin and a regular bcomplex pill every day and I was back to normal in 4-5 months. I have read that the oral works as well as injections, but your doctor will decide because you have other causes. I take my b12 every morning now and will forever. Hope you feel better soon.

1966sll
1966sll in reply to G1nny

Thanks for your response, interesting to see how your deficiency was caused. Would make sense if I was vegetarian however this isn't the case so I'm leaning towards it being an absorption issue - just got the wait for the results. Glad you've got it sorted!

clivealive
clivealiveForum Support

Hi 1966sll you may also need to supplement with folic acid.

Has your doctor prescribed this?

As long as you don't have an absorption problem with your digestion oral supplementation should be OK.

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 and your B12 level is very low.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well

.

1966sll
1966sll in reply to clivealive

Thank you for your response and information! Yes I've been prescribed a high dose of Folic Acid for 2 months so will see how I get on with that. Hopefully manage to get the right balance once a determining factor for the deficiency has been decided!

G1nny
G1nny in reply to 1966sll

Please keep us informed; want you to feel better quickly.

Hi,

"It was argued it's not "best practice" to jump straight to B12 injections"

With results as low as yours I'm very surprised by what GP said, in fact I'm surprised you're still walking. Delay in treatment , especially if you have neuro symptoms, could lead to further deterioration including spinal damage.

I'm assuming you're in UK.

Going to give you a whole load of links etc with B12 info.

As you have a relative with b12 absorption problems please think about joining and talking to PAS (Pernicious Anaemia Society). They can give support to those seeking diagnosis. Although based in Wales, UK they have members around world.

Sorry for rushed reply, got to go out soon.

Link about "What to do next" if B12 deficiency suspected.

b12deficiency.info/what-to-...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been checked for H Pylori infection?

patient.info/health/dyspeps...

Internal parasites eg fish tapeworm?

Any recent surgery using nitrous oxide as part of anaesthesia/pain relief?

Nitrous Oxide

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

Coeliac Disease

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done. It's an important test as it shows which patients have IgA deficiency( an immunoglobulin).

A person with IgA deficiency is not able to make the Coeliac antibodies that the tTG IgA test checks for, even if they have Coeliac disease, and they will need to have other tests for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version) recommend sanyone with unexplained b12, folate or iron deficiencies should be tested for Coeliac disease.

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

Coeliac Blood Tests

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

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...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

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 is up to date with UK b12 guidelines.

"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.

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

Point 1 is about under treatment of B12 deficiency with neuro symptoms present.

Lots of useful info in link below, recommend spending plenty of time reading it.

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/

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS have a GP who knows about PA who your GP could contact for advice.

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

May be stories relevant to you on these.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

"Yes I've been prescribed a high dose of Folic Acid for 2 months"

Vital that any co-existing b12 deficiency is treated if given folate treatment. See Management section in link below for more info on this.

Folate Deficiency

patient.info/doctor/folate-...

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

Process may vary in other parts of UK.

Neurological Consequences of B12 Deficiency

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.... See Page 2 of articles

Blog post from Martyn Hooper's blog, mentions SACD

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

Help for GPs

1) PAS website has section for health professionals. They can join PAS for free as associate members.

2) PAS leaflet "An Update for Medical Professionals: Diagnosis and Treatment " available to PAS members. See Page 1 of articles. Some forum members have passed this to GPs.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog about how PAS can support those seeking diagnosis.

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

3) I gave my Gps a copy of book "What You Need to Know About Pernicious Anaemia and B12 Deficiency " by Martyn Hooper.

4) PAS have contact with a GP who understands PA so other GPs can talk to this GP.

I am not medically trained, just someone who has spent years trying to find out what is wrong with me.

I hope you have someone supportive who can go with you to appointments, even better if they have read up about b12. Sadly B12 deficiency is not always as well-understood as it could be amongst health professionals so it pays to do some B12 homework.

Good luck.

1966sll
1966sll in reply to Sleepybunny

Hi Sleepybunny thanks for your reply and really appreciate all the info! I am in the UK yes.

I agree with what you've said, not sure if it's a cost thing or what for the reluctance to start injections. Was told that "policy has recently changed" and that the "up to date local guidelines and procedures were being followed" and that was that. I already had to wait a week after having test results back to even speak to a GP about them who subsequently prescribed a prescription for oral tablets and folic acid which I could have picked up over the counter anyways.

Will definitely look into talking to PAS, thank you!

Sleepybunny
Sleepybunny in reply to 1966sll

Was told that "policy has recently changed" and that the "up to date local guidelines and procedures were being followed"

Please consider checking what they have said. My experiences have led me to be very cynical. You have the right to ask to see/get a copy of policy they are following but be warned this may irritate them.

To locate local B12 guidelines , do an internet search, search on local area NHS website, submit a FOI, freedom of Info request to local NHS website, if all elsee fails see if local MP can help.

If they have been updated since the BSH guidelines (link in my other post) came out in 2014 then I'm very surprised they are recommending oral b12 .

Sadly I learnt not to trust what I was told unless I had the evidence in my hand.

In my area, local B12 guidelines have not been updated for years.....

PAS membership

pernicious-anaemia-society....

There may be a PAS support group close to you.

Uk B12 documents I have linked to, make it clear that a patient symptomatic for B12 defic, should be treated even if B12 level within range.

Oral cyanocobalamin is only recommended for dietary deficiency in UK. See BSH guidelines. It's clear in BSH guidelines that patients with B12 defic, with neuro symptoms should be on B12 injections whatever the cause of b12 defic,, even if it's diet.

Do you have neuro symptoms?

If yes, NICE CKS link suggests GP should contact a haematologist. Has GP done that?

Have you been referred to a neurologist?

I assume you eat pelnty of b12 rich food and you have a relative with b12 absorption problems. Does GP know family history?

Glad to read you're thinking about contacting PAS.

Would suggest you put queries about treatment in a letter. See letter writing link in other post. in UK, letters to GP are filed with medical records so are record of issues raised and in my opinion less likely to be ignored than things said over phone or face to face.

Do you have any thyroid results? Suggest putting them on Thyroid Uk forum. GPs often only test TSH which won't give a full picture of thyroid function.

Foggyme
FoggymeAdministrator in reply to Sleepybunny

1966sll. I agree with all Sleepybunny says.

Yes - ask for a copy of their guidelines - you could intimate that you’d like to write to the CCG and NHS England to challenge these. If the treatment guidelines in their policy is as he says, the they are not in line with the guidelines issued by the British Committee for Standards, the British Medical Journal, NICE etc.

And if the update he speaks of is recent - shocking!

👍

Foggyme
FoggymeAdministrator

Hi 1966sll.

You don't give a reference range for your blood test but nevertheless, at 88ng/L your serum B12 is very very low - you have a serious B12 deficIency. Not surprised that you feel exhausted - must feel very ill indeed.

Your GP is wrong. You should be treated immediately with B12 injections (the intensive treatment regime - more of that below). The oral tablets licences for use in the UK are very low dose - 50mcg - and these are only for those with a proven dietary dficiency - that does not sound like you.

Here's something about problems with oral treatment:

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

All causes of B12 deficIency caused by absorption problems (and there are many, PA being just one) are treated in the UK with B12 injections.

Here's what the BSCH guidelines - the best practice your GP should be following - says about treating B12 deficIency:

Current clinical practice within the UK is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form (outlined in the British National Formulary, BNF, medicinescomplete.com/mc/bn...). Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for 2 weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternate days until there is no further improvement. [my bold]

And here's a link to the full guidelines (published 2014, but unfortunately, many GPs have not read them):

onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and Folate Disorders)

You're right - because you have neurological symptoms it's important that treatment with B12 injections commences immediately to prevent the development of potentially irreversible neurological damage and give the best chance for optimal recovery.

Your GP is obviously not aware of the neurolgical havoc that B12 deficIency can wreak on the human body so you may have to be determined and very persuasive - but polite 😉 - in your approach. Suggest you print the BSCH guidelines, highlight the relevant bits and take along to discuss with your GP.

Might also be worth telling him that you're concerned that failure to treat immediately may result in the development of subacute degeneration of the spinal cord. Not suggesting you have this but many GPs are. It aware of it and it might shake up his thinking a little. Or it should.

Also a good idea if you can take someone with you who is prepared to read the information and support you request for immediate treatment. GPs are oft n more attentive and less dismissive if there is a witness present. Sadly.

Here's more information about the importance of early and sufficient treatment for B12 deficIency with neurological symptoms:

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

Finally...it's really important that you start B12 injections as soon as possible. If your current GP sees the evidence above and still will not treat you with B12 injections, then suggest you tell him - again politly (for a start, at least) that you're going to write a letter to himself and the practice manager and make a formal request to be treated as per the guidelines - which you have just shown him. And say that you will,ask him to support his decision not to treat, in writing, with evidence (which he won't be able to find because there isn't any). He will be aware that this goes on your medical records - will make him more attentive. But hope,it,doesn't come to that.

Also - in the meantime to try and get treatment quickly - is there another GP in the practice who you can see - presenting the same information - in an attempt to to get the right treatment.

We read some terrible things here - and not starting you on immediate injections with a B12 level of 88ng/L is one of those things! As Sleepybunny says, I'm surprised that you're still walking.

Very best of luck. Let us know how it goes and post again if you need more help.

👍

P.s your GP should investigate the cause of your deficient (as per the BCSH guideline)...but he sank uk’s start your treatment FIRST 😉.

Also - be aware - 40%-60% of those with PA test negative in the intrinsic factor test , so you can test negative and still have PA (called antibody negative PA - AbNegPA)

Hi Foggyme, apologies reference range on my blood test results are as follows:

Serum vitamin b12: Normal Range > 203

Serum Folate: Normal range > 4.0

Thank you so much for your advice, after already having a phone call with my GP close to tears saying how tired I feel with no avail I feel I'll have to take your advice and take things further.

I believe they're waiting on the results of the Intrinsic Factor Antibody test which I had the bloods done for this morning, which should be back in a few days. But still, to go another few days feeling this way when there is a readily available treatment seems daft to me.

Hopefully someone sees 's sense and I get somewhere soon, thank you!

Foggyme
FoggymeAdministrator in reply to 1966sll

Even without the reference range, it obvious that you are severely deficient in B12 😖.

Unfortunately, the IF test, if negative, may not help (as per above).

But really, they shouldn’t be waiting for ANY test results prior to starting treatment. Says that somewhere in the BSCH guidelines - good idea if you could find and place under your GPs nose (sorry, don't have time to look for it right now).

Really sorry that you're having such problems - this is truly shocking.

If get nowhere, for speedy action suggest you ring Martyn Hooper at the PAS and ask him to intervene with your GP on your behalf - as you've got as far as you can (Sleepybunny has given you the details).

Cherylclaire
CherylclaireForum Support

Agree with all of the above. In Feb 2016, my B12 level was 196ng/L (range: 197- 771ng/L), so you can see I was picked up just outside the range and consider myself very lucky that I had a quick-thinking GP. I am still trying to get well now. Time is of the essence with this problem, and you have a very low level of B12.

I have tried Boost spray available from Holland and Barrett, between injections, and it has never done anything for me. It can help some people, but others have had to learn the hard way that it is ineffective for them.

I don't think you have the luxury of time to experiment with this. I'm shocked that your GP thinks you do. Perhaps s/he does not understand how important this vitamin is to every cell in your body. S/he should.

Get straight on it. It can take time for you to see results so don't worry. In the meantime, you have some serious reading to do ! Wish you best of luck and let us know how you get on.

1966sll
1966sll in reply to Cherylclaire

Thanks for your reply, I agree about time being an issue, tried to stress this with my GP as I’ve already been feeling like this for so long! Didn’t seem to register with them as being an urgency to resolve so I’m going to ask for a second opinion!

This is the NHS protocol for Hull and East Yorkshire hey.nhs.uk/wp/wp-content/up...

Print a copy and ask why your local recommendations are different. Ask to see the local guidelines. Demand injections of B12 ASAP.

Foggyme
FoggymeAdministrator

1966sll. Here's another document that might help:

archive.is/hbPHE

Link doesn't work for everyone because it's an archive site and depends on your browser settings, so here's what it says, just in case:

UK NEQAS (UK National Quality Assessment Scheme for Haematinic Assays)

16 May 2013

B12 ALERT

False normal B12 results and the risk of neurological damage:

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

The significance here is that the UK National Quality Assessment Scheme for Haematinic Assays has issued an alert instructing to GPs to treat immediately with B12 injections when neurolgical symptoms are present - even if B12 is Normal (False Normal).

It shouldn't be beyond the wit of your GP to realise that if treatment is required immediately (even in the presence of normal B12 levels) then it’s most certainly required immediately in the present of severe B12 deficIency - which you evidently have.

Print the document in the link and show to your GP.

👍

Hi,

Might also be worth making an appt with and talking to practice manager, pointing out that GP is not following recent guidelines (BSH Cobalamin and Folate Guidelines).

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

Words of warning...

Being an assertive patient can lead to deterioration in patient/GP relationship. I gave up worrying about this when I realised I was heading for spinal damage and dementia type symptoms if I didn't get treatment.

Personally I'd be tempted to stick a copy of BSH flowchart under GP's nose and include a copy in a letter to GP.

stichtingb12tekort.nl/weten...

Would urge you to contact PAS for advice on how to approach GP. Unfortunately, PAS can only intervene on behalf of PAS members. Membership costs about £20 for a year.

PAS office is open today Wed am.

pernicious-anaemia-society....

I have met people with b12 deficiency who have suffered SACD due to delays in diagnosis/inadequate treatment so worth fighting for the right treatment.

Suggest getting all other recent blood test results, maybe even a complete copy of medical records. Set of test results, maximum cost UK is £10. Set of medical records UK £50. Some UK GP surgeries have access to an online summary of results/records but this is just a summary. Might be worth asking for access to paper files as this may have extra info. If cost is an issue then it is free to view records, need to make appt to do so, probably with practice manager. patients have a right to access/get copie sof files. Only reason GP surgery can refuse is if they feel giving copies etc can cause damage to patient in some way.

If there is any possibility of formal complaints then can be worth getting copies of records etc before complaints procedure starts. It is not unknown for records/test results to get mislaid sometimes.

There can be very useful clues on FBC, Full Blood Count as to whether B12, folate or iron deficiencies are likely. See link in other post about Full Blood Count, Macrocytosis etc. Low b12, low folate can lead to enlarged red blood cells (macrocytosis). Low iron can lead to small red blood cells (microcytosis). Picture is complicated if a person has both low iron and low B12/low folate as effects of low iron on red blood cells may mask effects of low B12/low folate.

Have you got a recent ferritin result?

Has your GP ordered a blood film?

Some UK people have had help from B12d.org

b12d.org/

MP

If you are not getting NHS treatment you are entitled to, then local MP may be interested. Most MP's websites list when MPs hold advice surgeries.

parliament.uk/mps-lords-and...

Second Opinions

1) Another GP at practice

2) If GPs unhelpful, consider changing GP practice. PAS support groups may be source of info on helpful GPs.

3) Consider going private.

However going privately is no guarantee of better treatment.

4) HDA patient care trust (link in one of my other posts).

Good luck.

If your not vegan, then no amount of b12 pills will help you, you need b12 injections & 5mg folic acid asap

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