Low ferritin question

[Lunadoo]

Hi. Would be grateful for advice. My (adult) daughter had always suffered from anaemia to some extent. Last year her B12 came back at 119 and she had a course of injections. Recently she had been feeling weak, tired and with palpitations and tachycardia, so had blood tests. B12 was 300 and ferritin 9. Her GP said this was OK and no treatment needed, despite her arguing about the low ferritin. However a week later the surgery Receptionist phoned and said a (different) GP said she had to have a B12 injection plus high dose ferrous sulphate. They said her B12 was falling and she would need an injection 3 monthly. Last year her intrinsic factor test was fine. History of PA in my family but they say she doesn't have that. GP said she only needs ferrous sulphate for a month? ( "as it costs the NHS").

[Nackapan]

What usually happens is a course of iron given then bloods retested. Iron is looked at all together.

Mh daughters ferritin wax skso 9 ug/L mine 29 and ignored.

We both seem to be less symptomatic on 40+ aiming for 50-70 ug/L serum ferritin

We both had symptoms.

So pushed for another gps opinion. iron then prescribed. because of symptoms.

Different foods with vit c to help absorb.

Our diets are very different.

And iron supplements on prescription.

I still need a low maintenence dose of iron.

First time ever.

My dsughter an even lower maintenence dose of iron

Shd needs does need 400mcg folic acid daily

I don't.

We both need daily vitamin D.

We both have b12 injections on prescription.

My daughter 10 weekly .

I'm prescribed 2 weekly.

My mum 8 weekly.

So yes does run in families.

We need different regimes though.

Otherwise on a see saw .

We all operate at different levels too.

Sounds like thd present Gp more In formed .

Hoping your daughter gets on with regular b12 injections and finds tge course of iron works for her.

It csn take some time.

I buy my own iron with gps awareness fir maintenence.

Alternating spartone . Solar gentle iron and ferrous fumarate 210

I have regular blood checks as too much is as bad ax too little.

[Narwhal10]

Hi Lunadoo,

Sorry to hear about your daughter. I agree with Nackapan, it’s pretty individual and ideally a full iron panel should be taken.

Good ferritin levels are needed with vitamin B12 deficiency.

So, the GP may prescribe ferrous fumarate/ferrous sulphate for a month. Both of which can cause constipation. It may be worth buying some lovely Solgar Gentle Iron (it’s gentle on the digestive tract) and Spatone (with vitamin C - the apple flavour is nice to taste) to supplement for another month. Then retest the ferritin.

Hopefully that with reduce her iron deficiency symptoms. It’s worth keeping a diary of all symptoms. We are all different.

There is a family history of PA and the IF test is only 50% effective. Doctors are very misinformed and definitely worth joining the PA Society as the frequency of injections needed varies from person to person.

For information my ferritin was 17 mg/L then 7 mg/L. I still have to have a maintenance dose of iron and also found out I am copper deficienct !!

Best wishes

[Hil101]

I always had anaemia and low ferritin and it was always ignored by GPs because having periods apparently explained it (!). HOWEVER, I actually had undiagnosed coeliac disease until age 52. I suggest your daughter has a blood test for coeliac antibodies and this will eliminate the possibility. Coeliac causes damage to the small intestine (which one doesn’t have to be aware of) which decreases absorption of nutrients and iron deficiency/low ferritin is a definite symptom. I hope it isn’t coeliac as the diet is a sod but research is moving ever closer to a cure.

[Sleepybunny]

Hi,

From personal experience...it is possible to have severe B12 deficiency symptoms with serum (total) B12 result well within range.

UK guidelines suggest that people who are symptomatic for B12 deficiency should be treated even if serum (total) B12 result is within range.

I'm going to post a lot of information and I suggest you take at least a week to sift through it.

Some links may have details that could be upsetting so you may want to read through it with someone else.

"Last year her intrinsic factor test was fine. History of PA in my family but they say she doesn't have that"

1) Low B12

2) blood relative with PA

3) symptoms consistent with B12 deficiency

I really think PA should be on the GP's radar. Has your daughter asked them a direct question such as "Why do you think I don't have PA?"

Does the GP know that it is possible to have Antibody Negative PA? A negative result in IFA test does not rule out PA.

Have you considered joining PAS?

PAS membership is separate to membership of this forum.

PAS can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

I have also read that a pepsinogen test may be helpful in diagnosing PA.

PAS website has a page for health professionals that the GP may find helpful and has lots of useful articles/leaflets that PAS members can print off.

pernicious-anaemia-society....

pernicious-anaemia-society....

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

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates covering a variety of situations linked to B12 deficiency.

NHS Complaints

patients-association.org.uk...

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

A few go to the Press/other media

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...

UK B12 documents

NHS article about B12 deficiency (simply written, lacks detail in my opinion)

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

BSH Cobalamin and Folate Guidelines

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.

"They said her B12 was falling and she would need an injection 3 monthly"

Is your daughter going to get ongoing B12 injections?

I suggest you and your daughter read the BNF link below carefully.

It outlines two patterns of treatment for B12 deficiency in UK.

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

If she has neurological symptoms, make sure she's on the pattern of treatment for B12 deficiency with "neurological impairment" which is loading injections every other day for as long as symptoms continue to get better then maintenance injections every 2 months.

Both patterns of treatment allow for maintenance injections every 2 months.

If she has a face to face appointment with GP, she could ask them to check their BNF book Chpater 9 Section 1.2 which has the info about treatment for B12 deficiency.

My understanding is that if someone is treated for folate deficiency it is vital to treat any co-existing B12 deficiency as well to avoid neurological problems. In someone with both B12 and folate deficiency, B12 treatment would usually be started first.

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(over 40 pages).

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.

It's also possible to submit a FOI request to GP surgery. Put FOI/Freedom of Information into search box on GP surgery website or CCG website and it should take you to a page that explains how to submit a FOI request.

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

b12deficiency.info/gloucest...

Privacy

I think it is best to be careful with how much personal info is included in posts to protect privacy but if she doesn't mind people knowing her CCG (Clinical Commissioning Group) someone on forum might be able to help you or her to find the local guidelines.

Two useful B12 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 is out of date in above book. 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.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

Misconceptions (wrong ideas) about B12 deficiency

I suspect her GP may have some misconceptions. See links below.

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 that health professionals may have.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

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

BNF (UK) 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...

Is your daughter symptomatic 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)

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....

Has she got any risk factors?

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-...

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...

I am not medically trained.

[Sleepybunny]

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