Showing deficiency in several areas. - Pernicious Anaemi...

Pernicious Anaemia Society

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Showing deficiency in several areas.

omits profile image
9 Replies

I have had a FBC (in UK NHS)

WBC 3.3 10^9/L (4 - 10)

RBC 441 10^12/L (4.5 - 5.5)

Lymphocyte 0.6 10^9/L (1 - 3)

CRP <1 so OK I think (no infection)

B12 195 ng/L (197 - 771)

B9 Folate 6.8ug/L (3.9 - 26.8)

Vit D hydroxy 31 (>75)

A year ago I had a stomach condition where i lost weight but after a time it came back. I am talking to my Dr next week and want to get to the bottom of my problem symptomatically is occasional Fatigue and random early morning BP spikes (e.g. 200/90 normal is 125/75). I have been proscribed Ramipril but all those give me problems. It seems to me (also being 75) I am malabsorbing (ignoring the Blood Counts) these vitamins. For the Blood Counts I await opinion of a specialist as I have non Hodgkin's in the family. My WBC has been around 1.0 since 2014.

Opinion on the deficiencies appreciated.

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Nackapan profile image
Nackapan

Have you other symptoms of b12 deficiency?

Oral tablets may work for you ?

Gp's often ignore lower readings. Write a list of symptoms.

Also ask for loading doses of vitamin d

I hope you get sone answers

omits profile image
omits in reply toNackapan

Thanks. The only symptoms I have are occasional fatigue. But Pins and Needles only come on when I am taking either Ramipril or Candesartan (I know as I have taken holiday from both and the problem dying away) so discount, BP aside though. I have had occasional fatigue most of my life. I am taking methylcobalamin B12 (started a week ago) and so far not noticed fatigue unless I work hard (which I perhaps should not do at 75!) but holding off on the Vit D to see what Dr. says. I am now going to go through Sleepbunny's points ready for Thurs when Dr is getting back about 2nd opinion on W/RBCs + Lymphs. I need a strategy to persuade him to do something as I agree they tend to ignore marginal figures. I have done some feed back below as well.

Sleepybunny profile image
Sleepybunny

Hi,

I can see from your results that ....

serum (total) B12 is just under range.

Vitamin D is below range by a fair amount

folate is at lower end of normal range

What has your GP said about these results?

Do you also have results for ferritin (or other iron tests) and are there more results from FBC (Full Blood Count) you haven't posted?

It can become very tricky to interpret full blood count results in a person who has B12 deficiency (and/or folate deficiency) as well as iron deficiency.

B12 deficiency (and folate deficiency) can lead to enlarged red blood cells (macrocytosis).

Iron deficiency can lead to small red blood cells (microcytosis).

One deficiency can mask the effects of another.

UK guidelines suggest that people with the symptoms of B12 deficiency should be treated even if serum (total) B12 is within range.

There is a lot of information below so I suggest you take at least a week to look through it.

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

Do you have symptoms consistent with B12 deficiency?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

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

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Vital to get prompt treatment for B12 deficiency or there is a risk of permanent neurological damage including problems with spinal cord.

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....

Do any of the following risk factors seem likely?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

b12-institute.nl/en/causes-... (from B12 Insitute - Netherlands)

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

b12deficiency.info/what-to-...

If PA is a possibility, worth joining and talking to PAS who can offer support and pass on useful info.

Membership of PAS 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....

PAS has useful leaflets and a page for health professionals that your GP may find useful.

pernicious-anaemia-society....

pernicious-anaemia-society....

Have you been tested for coeliac disease?

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

NICE guidelines Coeliac disease

nice.org.uk/guidance/ng20

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates that people can base their own letters to GP on.

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

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.

Keep copies of any letters/communication sent or received in case needed in the future.

UK B12 documents

NHS article about B12 deficiency and folate deficiency (simply written)

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

Link below 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...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from above)

pernicious-anaemia-society....

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

stichtingb12tekort.nl/engli...

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.

See blog post below if you want to know why I suggest that UK forum members should find their local guidelines.

b12deficiency.info/gloucest...

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

Misconceptions (wrong ideas) about B12 deficiency

B12 article from Mayo Clinic in US (aimed at researchers and 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.

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 treatment guidance in UK has changed since above blog post was written.

Diagnosis and Treatment Pitfalls

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

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

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 guidance in book is out of date. See BNF hydroxocobalamin link.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA 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/

Referrals

Sometimes the route to better treatment/diagnosis is through seeing a specialist although seeing a specialist is no guarantee of better treatment or getting a diagnosis. There are some specialists who lack understanding of B12 deficiency.

If you have neuro symptoms, I would expect you to be referred to a neurologist.

NICE guidelines neurological referral

nice.org.uk/guidance/NG127

If neuro symptoms are present and your symptoms are consistent with B12 deficiency, I would expect you to be referred to a haematologist. If GP is reluctant to refer (referrals cost money) then worth trying to get GP to write to a local haematologist asking for advice on how to treat you.

If gut symptoms are present, have you been referred to a gastro enterologist?

Gastro specialist should be able to spot signs of gastritis, signs of PA, Coeliac, H Pylori infection etc.

NICE guidelines - when to refer B12 deficient patient to a haematologist and gastro enterologist

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

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

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

omits profile image
omits in reply toSleepybunny

WOW! thanks.

Do you also have results for ferritin (or other iron tests) and are there more results from FBC (Full Blood Count) you haven't posted?

NRBC = 0

Basophil = 0

Neutrophil = 2.0 so low end of 2.0 - 7.0 maybe following WBC.

Haematocrit = 0.4 so low end of 0.4 - 0.5

Iron level 19.2 of 5.8 to 34.5

Total Binding good at 54 umol/L

Other Iron in range so Iron looks good!?

Folate 6.8 in 3.9 - 26.8 so low-ish.

Liver function all in range.

Calcium/Albumin in range

eGFR = 83 so as far as I can tell OK.

All other figures are within ranges stated. Now I can get more informed from your links.

Sleepybunny profile image
Sleepybunny in reply toomits

Do you have a ferritin result?

Link about iron tests

labtestsonline.org.uk/tests...

What some forum members have found, including myself is that some GPs find it hard to understand that it is possible to have severe B12 deficiency symptoms with a serum B12 result that is within range.

I had over 40 typical B12 deficiency symptoms including dementia symptoms and spinal symptoms with most serum B12 results between 300 - 500 ng. I did have one below range serum B12 result for which they only gave me one set of 5 or 6 loading injections then they wouldn't give me any more.

Sadly I trusted them and didn't realise till several years later that I should have had a different pattern of treatment ... I had many neuro symptoms (see BNF Hydroxycobalamin link).

Functional B12 deficiency

This is where there is plenty of B12 in the blood but its not getting to where it's needed in the cells.

MMA, Homocysteine and Active B12 ( Holotranscobalamin/HoloTC) are tests that can help to diagnose functional B12 deficiency.

Links that mention functional B12 deficiency

See Point 5 in next link.

b12deficiency.info/writing-...

See Causes section in next link

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

If your symptoms are consistent with B12 deficiency but GP refuses to treat you due to your levels being "normal" I suggest putting queries about treatment/diagnosis into a letter to GP. See letter writing link in other reply.

Useful quotes to include in letters and conversations

From Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"

From BMJ article on B12 deficiency

bmj.com/content/349/bmj.g5226

"If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features"

From NICE CKS (Clinical Knowledge Summary) B12 deficiency

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

"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12"

Best pieces of advice I ever got were

1) to always get copies of or access to test results and medical records

2) to get hold of local CCG guidelines on B12 deficiency

If GP says they can't treat you due to the guidelines then you could ask them to show you the guidelines they are referring to.

If they can't show you a copy there and then, ask for the title of the guidelines and then you could submit a FOI (Freedom of Information) request to GP surgery asking for a link to or a copy of these guidelines.

"I am taking methylcobalamin B12 (started a week ago)"

Supplementing with B12 without a confirmed diagnosis of B12 deficiency, can make it more challenging to get a diagnosis.

b12deficiency.info/what-to-...

Blood tests linked to B12 deficiency

b12deficiency.info/testing/

Sleepybunny profile image
Sleepybunny

A few more links that may be helpful.

B12 deficiency and folate deficiency can be associated with different types of cytopenia (low amounts of a particular type of blood cell).

Anaemia is a low level of red blood cells

Leukopenia is a low level of white blood cells.

Thrombocytopenia is a low level of platelets.

Pancytopenia is a deficiency of all three main groups of blood cells.

About Full Blood Count

labtestsonline.org.uk/tests...

patient.info/treatment-medi...

omits profile image
omits in reply toSleepybunny

Thanks again. Ferritin result? No. As I understand it that test is not made if the Iron results are OK as they seem to be and haemoglobin is 138g/L and MCVol is 91fL so within range si I guess that is why it is absent.

PS I have low Vit D. Dont know if I mentioned that 31 (>75) so really low.

nellie237 profile image
nellie237 in reply toomits

"For people with suspected iron deficiency anaemia, arrange a full blood count (FBC).

If results of the FBC show a low haemoglobin and low mean cell volume (MCV) check the ferritin level — check the ferritin level in all people with an MCV less than 95 femtolitres."

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

omits profile image
omits in reply tonellie237

Thanks nelie237 I did give those figure above and they appear to be in range and RDW is 13.2% so wel in range. It's so bloody complicated and confusing!

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