low iron and foliate : My daughter... - Pernicious Anaemi...

Pernicious Anaemia Society

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low iron and foliate

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My daughter has very low foliate and folic iron levels but they say her B12 and all other tests are OK But I do wonder if her iron levels are so low would it affect her B12 levels?

she has been feeling quite poorly and extremely tired they have given iron tablets for foliate for 3mths and folic 2mths each on 3x a day and 4 x a day which gave her horrible side effects 🙄 she has reduced the amount as said to do by her doctor and will see them in a couple of weeks .I

worried mum as this is heredity

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9 Replies
Sleepybunny profile image
Sleepybunny

Hi,

The best advice I ever got was to always get copies of or access to all blood test results.

There are people on this forum including myself who were told that everything was normal, no action and then they found abnormal or borderline results when they got access to results.

I suggest your daughter checks all her results and notes the actual result and the reference range.

She might want to post her results here but she needs to remove any details that might identify her or any health professional.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

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

From personal experience, I know it's possible to have severe B12 deficiency symptoms with an in range serum (total) B12 result.

UK guidance suggests that patients who are symptomatic for B12 deficiency should be treated even if their serum B12 is within normal range.

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

b12deficiency.info/what-to-...

"worried mum as this is heredity"

Are there blood relatives in the family with PA?

If yes, does her GP know that there is a family history of PA?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

I suggest you both look at some symptoms lists for B12 deficiency

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

In a person with both B12 and folate deficiency, vital that both deficiencies are treated.

Giving folate treatment without treating a co-existing B12 deficiency can lead to neurological problems.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.

NHS Complaints

patients-association.org.uk...

Care Opinion website

careopinion.org.uk/

Local MP/devolved representative may be worth talking to if struggling to get adequate treatment.

UK B12 documents

NHS article about B12 deficiency and Folate deficiency

(simply written, lacks detail in my opinion)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines

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 Hydroxocobalamin

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

NICE CKS B12 deficiency and folate deficiency

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

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

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

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.

Local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

Read blog post below if you want to know why I urge UK forum members to find out what's in their local B12 deficiency guidelines.

b12deficiency.info/gloucest...

Coeliac disease

With both iron and folate deficiencies, has she been tested for coeliac disease?

If she was tested in past and had a negative result, check the GP followed the recommended diagnostic process, some don't.

Guidelines below suggest that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

NICE guidelines Coeliac Disease

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

More info on Coeliac UK website

coeliac.org.uk/home/

Misconceptions (wrong ideas) about B12 deficiency

B12 deficiency is not always as well understood by health professionals as it should be.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

UK BNF Treatment guidance has changed since above blog post written.

Diagnosis and Treatment Pitfalls

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

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

B12 article from Mayo Clinic in US (aimed at health professionals)

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Two useful B12 books

Folate is also mentioned in both books.

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

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

BNF treatment info in book is out of date. See BNF hydroxocobalamin link.

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

Very comprehensive with lots of case studies.

I am not medically trained.

in reply toSleepybunny

Thank you for all the information and yes her dad and uncle's grandad had and has pernicious anaemia and I will get her to find out .

Nackapan profile image
Nackapan

Best she gets her results printed for her own records.

Then she will see her levels of iron ferritin fokate and b12.

Was her vit D tested?

She can be iron deficient without b12 deficiency.

If she looks up b12 deficiency symptomsit may be helpful.

See how she feels s when her iron abd folate levrks are raised .

Had the reason been found ?

Diet

Heavy periods?

I wish her well.

in reply toNackapan

Thank u

Gambit62 profile image
Gambit62Administrator in reply to

but please be aware that the symptoms of folate deficiency and B12 deficiency are more or less identical so if she is folate deficient it may not help.Is the folate deficiency dietary (ie lack of fruit and veg in diet). If not and your daughter has a folate deficiency then that increases the chances that she also has an undiagnosed B12 absorption problem.

Iron won't of itself affect B12 levels but if the iron deficiency is causing microcytic anaemia this can mask any signs of macrocytic anaemia caused by folate and B12 deficiency.

Peder1962 profile image
Peder1962

If your daughter is adding b12 (b12 tabletts, multivitamin (with b12), b12 injections or energy drinks (Red Bull, Monster etc…) then the b12 test (cobalamin) is totally irrelevant cause its gets too high - not the real value. Use Holotc test (best) instead or Mma.

Sleepybunny profile image
Sleepybunny

Hi,

So she has a parent and a grandparent with PA (Pernicious Anaemia).

She has low folate and low iron.

I'm interested to know what her last few serum (total) B12 results were.

It can be useful to look for trends in blood test results. For example results that are within normal range but have been dropping or increasing over time may be significant.

Blood tests associated with B12 deficiency

b12deficiency.info/testing/

I suggest she checks her medical records to see if she has ever been tested for PA.

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test is used in some countries but 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.

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

About 10 - 20% of people with PA test negative on PCA test.

Gastrin test

labtestsonline.org.uk/tests...

There was at least one forum member who tested positive on IFA (Intrinsic Factor Antibody) test but was not told at the time.

If not tested in past, I suggest she asks to be tested for PA in a short letter to GP and that she mentions the family history of PA .

If GP is reluctant to test for PA then it is possible to get tested privately in UK.

There is a high street chain of chemists in UK that can do this.

If GP refuses to test for PA, it's helpful to know the reason why as this might help to argue against the reason.

I met a lot of ignorance about B12 deficiency among health professionals and suffered for years as a result. See links about Misconceptions in my other reply.

GPs are unlikely to accept the results of private tests but a significant result in private tests may be enough to nudge them into ordering the same tests or referring to a specialist who can order them.

Might be worth her joining and talking to PAS who can pass on useful info and offer support.

pernicious-anaemia-society....

A negative result in the Intrinsic Factor Antibody test does not rule out PA.

Unfortunately, some GPs and specialists may be unaware of this.

Some people have Antibody Negative PA, see diagnostic flowchart from BSH Cobalamin and Folate guidelines in other reply.

Martyn Hooper, chair of PAS, tested negative several times before getting a positive result in IFA test.

He mentions Antibody Negative PA in his book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

nellie237 profile image
nellie237

Hi Lainy247,

As sleepybunny has said, either copies or online access to blood results is an eye-opener.

You should also ask the GP to test for coeliac. Per NICE

"If folate levels are low, assess dietary folic acid intake, and if history suggests malabsorption, check for coeliac disease by testing for antiendomysial or antitransglutaminase antibodies (depending on the local laboratory).

The main cause of folate malabsorption is gluten-induced enteropathy. "

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

JOLLYDOLLY profile image
JOLLYDOLLY

It is possible, especially if your daughter has heavy periods. I had very low iron and pernicious at the same time, before the menopause. Your daughter definitely needs to get checked.

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