False reading?

[Runner169]

Hi my daughters B12 was 143 & she was given prescribed B12 50mg x2 daily. She’s had a recent blood test & her levels are 479 n/g. Her consultant wants her to come off the tablets & take a multivitamin. I’m a bit concerned it could be a false reading because she’s taking B12. It’s the second time she’s been deficient, my sister has pernicious anaemia so she was checked for intrinsic factor but it was negative. I’m reluctant to take her off them as she is so poorly with other medical issues. Shall I supplement her myself?

[Nackapan]

Will do no harm.Remember a negative intrinsic factor result does not rule out PA.

The reading wi be as accurate as the test csn be.

Seems like the doctor satisfied she csn absorb from a tablet decided to stop them??

Is this a 'test' to see if her level drops agsin off supplements?

Ask ,as a seesaw of levels not helpful.

Makes more sense to haveca maintenence dose??

Then it's if she feels any benefit to her symptoms

Also if she's able to use the b12 ?

You csn buy the same as prescribed at any pharmacy.

I was put on thst dose to try and have fewer injection s.

Must be in their guidelines.

Was her folate iron abd vitamin d levels okay?

Is she on medication that coukd deplete b12?

A multivit a good idea as prescribed.

Ask to check bloods in 3-4 months and log symptoms.

Hope she xsn eat a good mixed diet too

Work with her consultant but just bear in mind vitamins and minerals are not well understood by many.

Symptoms are the key abd any relief from them.

A minefield. Hope she improves.

[Runner169 in reply to Nackapan]

Thank you. She’s on daily lansoprazole. I’ve brought this up with her gastro consultant who has not directly answered the question, does it effect B12 absorption. So frustrating as I’ve read it does. I have requested a sneaky repeat prescription & will continue until she responds to my question.

[ClareP5 in reply to Runner169]

Yes PPIs impact B12 absorption so she’ll need to stay on supplements. B12 can be really high eg over 2000 when on supplements. It’s not toxic.

[nellie237 in reply to Runner169]

PPI's affect absorption of many if not all nutrients. They are the most prescribed medication in the UK but should only be taken for short periods.

Link to BNF:-

bnf.nice.org.uk/drug/lansop...

[Runner169 in reply to nellie237]

Thank you. I did mention this too but he said take a probiotic! The benefits apparently out way the potential harm.

[wedgewood]

I just want to say that a negative reading for an Intrinsic Factor Anti-body test ( IFAB) is no proof that the person doesn’t have Pernicious Anaemia. About 50% of P.A, patients test negative, You doctor should know this .

[Runner169 in reply to wedgewood]

I had no idea the test wasn’t conclusive! Thank you.

[Marz in reply to Runner169]

Multi-vits often include ingredients you may not need ... and possibly not enough B12. Which brand is she taking ?

PPI's are for short term use and yes they do affect the uptake of nutrients.

Also worth considering that the symptoms for both low and high stomach acid are similar. Have VitD - Folate and Ferritin also been tested ?

[Runner169 in reply to Marz]

She’s been on lansoprazole for 3 years due to chronic stomach pain & unknown cause of bleeding. She’s had low Vit D, but everything else is fine. She was prescribed cyanocobalamin.

[Marz in reply to Runner169]

Hopefully she is taking VitD based on the result. GP's often prescribe too little. Folate and Ferritin good around mid-range.

VitD is fat soluble so best taken with a meal containing good fats. I buy the gel capsules containing olive oil - on-line.

PPI's are for raised stomach acid so if your daughter has low stomach acid then it could be the wrong prescription ....

[nellie237 in reply to Runner169]

That's really hard. 3 years seems like a long time to go without an answer. There must be processes of elimination/tests/guidelines for Gastroenterologists to follow in such circumstances. Covid has probably had a big impact on what should have happened. I would chase it up if I were you.

Also lots of research. The British Society of Gastroenterologists is a good place to find guidelines. Labtests online is good for basic understanding blood tests.

The best advice I have received is to obtain copies of all my blood results. I found that I had been low in Iron, Folate and B12 for years, but never told. I was on PPI's for over 10 yrs, but I have an underactive thyroid and coeliac......so a different malabsorption problem.

GP ordered bloods are pretty easy to get by asking the receptionist to print them off for you, or better still online access is a simple form to fill in and you have to provide ID. Hospital test results take a bit longer, generally about 6 weeks Search SAR and the name of the hospital should lead you to a form.

Apologies, if I'm 'Teaching Granny to Suck Eggs' . 😊

[Runner169 in reply to nellie237]

Oh don’t apologise! I have learnt more in forums than the damn Doctors. Thank you! This is only a small part of her symptoms. She’s got PoTs, chronic migraine, seizures, low cortisol levels. Had loads of tests, but I don’t think they’re the right ones. Pretty standard. I have a lovely lady at the hospital who sends all the test results to me. She’s amazing!! I’ve found out stuff they didn’t even notice too. This is all before Covid. I personally believe they’re subject to a budget & tick box exercise. Once you’ve reached the maximum, then that’s it. I hope you are feeling much better with treatment. I think the B12 helped hugely especially with her mental health 😀

[nellie237 in reply to Runner169]

🤗🤗🤗

[Sleepybunny]

Hi,

I'm assuming you're in UK.

Is your daughter an adult?

I'm asking because patterns of treatment for children with B12 deficiency may vary from those for adults.

If your daughter is a minor then please consider seeking support from PAS as parents of children with B12 deficiency are not always listened to. See blog post below.

martynhooper.com/2017/07/21...

Some parents have been diagnosed with Munchausens by proxy, a serious mental health condition or social services involved.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

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.

It is still possible to have PA with a negative result in IFA or PCA test but some UK GPs/other doctors may not be aware that it is possible to have Antibody Negative PA.

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

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

Some links I post may have details that could be upsetting.

Children and B12 deficiency

b12deficiency.info/children...

Vitamin B12 deficiency in children

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

stichtingb12tekort.nl/engli...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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. See BNF hydroxycobalamin links for adults and children for up to date 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 (US authors)

Very comprehensive with lots of case studies.

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

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

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

stichtingb12tekort.nl/engli...

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 Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

BNF Hydroxycobalamin - adults

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

BNF Hydroxycobalamin - Children

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

NICE CKS B12 deficiency and Folate deficiency

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

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

If you're in UK, I suggest trying to track down local guidelines on treating/diagnosis of B12 deficiency for your CCG/Health Board and comparing local guidelines with BNF/BSH and NICE CKS links. There may be separate guidelines for children.

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

I've written some very detailed replies in the threads below which may have B12 info you will find useful eg causes of B12 deficiency, books, articles, more UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Runner169 in reply to Sleepybunny]

Wow thank you!! She’s 17 so basically treated as an adult. I’ll take a look & may chat to our GP about it as the General consultant just ignores my questions 🙄

[Hidden in reply to Runner169]

Your consultant just ignores your questions!

He's either not used to people questioning him on what and wherefore of different medication, or haven't got a clue on the subject and the fact you have put him on the spot.

[Runner169 in reply to Hidden]

Well he’s the clinical lead so I’d say not liking me questioning him! He has a real knack of not answering stuff he doesn’t want too. I find this with a lot of consultants lately even if I put it in an email. I’m not sure they are being overly cautious incase they’re wrong, or have a god complex 😞

[Hidden in reply to Runner169]

Bit of both 🙄🙄

[Sleepybunny in reply to Runner169]

Hi,

Have you considered writing a formal letter with your concerns to consultant/GP?

I would warn you that some doctors do not cope well with assertive patients and parents.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

When a letter is sent to GP/specialist, worth including a request that GP practice/hospital sends written confirmation to letter writer that they have received letter. Proof a letter was received can be useful in the event a formal complaint is made.

I included a request in letters that a copy of letter was filed with medical notes.

My understanding is that in UK, letters to GP/specialists are supposed to be filed with medical notes so are therefore a record that an issue has been raised.

Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.

Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.

Keep copies of any letters sent or received.

Does your daughter get copies of /access to all her blood test results?

Best piece of advice I ever got was to always get copies of all my blood test results.

I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case it is needed in the future.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment. Currently not taking on new cases but this may change in the future.

hdapatientcaretrust.com/

Local MPs may be worth talking to if struggling to get adequate treatment.

A few people go to the press.

This is very likely to affect doctor/patient relationship so not an easy option.

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

News story about MP in Scotland who raised concerns about treatment of patients with PA

douglasross.org.uk/news/mor...

PAS article about contacting NHSE about treatment concerns during pandemic.

pernicious-anaemia-society....

PAS leaflets/articles

pernicious-anaemia-society....

Some articles can only be accessed by PAS members.

There are PAS articles on Juvenile Pernicious Anaemia...some doctors may be unaware that PA can affect children and young adults.

PAS membership

pernicious-anaemia-society....

Link about B12 and Mental Health

b12deficiency.info/b12-and-...

Local Guidelines

Have you managed to track down local guidelines on treatment/diagnosis of b12 deficiency for your area of UK? It's good to know what you are up against locally.

Some of the guidelines have been posted on this forum. Search posts for "Local Guidelines" or try an internet search or submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a copy.

Hope you are not in the area below which has a poor reputation on this forum.

b12deficiency.info/blog/202...

I hope your daughter gets the help she needs...

Some forum members have had help from PAS and B12 Deficiency Info.

[Runner169 in reply to Sleepybunny]

Thank you!! I have sent an email to her consultant expressing my concerns. I get a copy of all her test results. She was B12 & D deficient 2 years ago. No one picked it up! I’ll have a read of the attachments. Thank again 😁

[Runner169]

Probably 😂