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Pernicious Anaemia Society

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Please could someone help me understand my blood test results?

bluetuesday1 profile image
ā€¢9 Replies

Hi all,

Apologies if this is inappropriate. I have had some blood tests done yesterday morning and received my results later the same day. The tests were ordered due to tachycardia. I have not been diagnosed with any medical conditions to date so I am in good health as far as I'm concerned. I'm a female in early 20s.

Does anybody know whether the attached results indicate anything to worry about? I am purely concerned about the nucleated RBC count of 0.1 as it was 0 the two previous times and I know that this is what I would expect to see. Should I worry about this? I have attached my results from the previous two blood tests in the last 9 months in case that's relevant.

Any information would be greatly appreciated!

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Gambit62 profile image
Gambit62Administrator

It may be that the result is in the 'noise' level for the test or it could be that you are starting to become anaemic (rise in MCV and lowering of RBC could indicate your red blood cells are becoming larger and rounder - though think they are both still within normal parameters.

Have you had vitamin levels checked - specifically Folate and B12. Has your diet changed eg eating less fresh fruit and vegetables (which would lead to folate deficiency)

bluetuesday1 profile image
bluetuesday1ā€¢ in reply toGambit62

Hi, thank you so much for your response. I thought about a possible anemia/B12 deficiency. These are the results for the last tests I had:

Serum vitamin B12 (180 - 914) - May 2020 436 ng/L - Dec 2019 1017 ng/L - Aug 2019 181 ng/L

Serum folate (3.0 - 20.0) - May 2020 3.9 ug/L - August 2019 7.8 ug/L

Serum ferritin (10 - 307) - May 2020 80 ug/L - August 2019 - 43 ug/L - Mar 2019 - 42 ug/L

I have been trying to eat healthier for the past few months; I have lost a fair bit of weight (17.5kg/38 pounds) since October last year (October BMI 25.5; now 19.3), if that's relevant.

Thank you so much for your insight! It does make a lot of sense.

Gambit62 profile image
Gambit62Administratorā€¢ in reply tobluetuesday1

Do you have B12 injections or were you supplementing heavily between August and December- just wondering why the level was so high.

People usually maintain B12 levels at a pretty constant level that is right for them. Your levels are all over the place which implies that something else is going on.

bluetuesday1 profile image
bluetuesday1ā€¢ in reply toGambit62

I was taking B12 supplements from Holland and Barnett (1000ug, every 2 days). The dose was probably a bit of an overkill however I was under the impression your kidneys are meant to flush out the excess?

Gambit62 profile image
Gambit62Administratorā€¢ in reply tobluetuesday1

that makes sense - the kidneys will remove excess B12 which is the most likely explanation for the drop between December and May. However, if you are putting B12 in faster than the kidneys can remove it then levels will build up - like running the taps really fast in a bath with the plug out - runt the taps fast enough and the bath still fills up.

How were you feeling in August when the levels were 181?

Do you eat meat/fish/dairy/eggs?

Sleepybunny profile image
Sleepybunny

Hi,

Do you have the reference ranges for each test?

This would be helpful when interpreting the results.

Do you have recent results for ferritin ( or other iron tests), B12 and Folate?

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

b12deficiency.info/what-to-...

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...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

I wrote another very detailed reply on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

I have read that B12 deficiency can lead to tachycardia. There are many other causes of tachycardia besides B12 deficiency.

I hope your doctors are helpful and good listeners.

I am not medically trained.

bluetuesday1 profile image
bluetuesday1ā€¢ in reply toSleepybunny

Hi, thank you so much for your insight. That's really helpful. I did consider I might be B12 deficient. I have been taking supplements recently which has led to increased levels in the last two blood tests. Reference ranges in brackets:

Serum vitamin B12 (180 - 914) - May 2020 436 ng/L - Dec 2019 1017 ng/L - Aug 2019 181 ng/L

Serum folate (3.0 - 20.0) - May 2020 3.9 ug/L - August 2019 7.8 ug/L

Serum ferritin (10 - 307) - May 2020 80 ug/L - August 2019 - 43 ug/L - Mar 2019 - 42 ug/L

Below are the reference ranges for the FBCs:

Haemoglobin estimation (120-150), May 2020 135g/L

Total white cell count (4.0-10.0), May 2020 5.0 10*9/L

Platelet count (150-400), May 2020 186 10*9/L

Haematocrit (36 - 46), May 2020 42%

RBC (3.80-4.80), May 2020 4.40 10*12/L

MCV (83-101), May 2020 94 fL

MCH (27-32), May 2020 31.0 pg

Neutrophil (1.8-7.4), May 2020 2.79 10*9/L

Lymphocyte (1.1-3.5), May 2020 1.83 10*9/L

Monocyte (0.21-0.92), May 2020 10*L

Eosinophil (0.02-0.67), May 2020 0.01 10*9L

Basophil (0.00-0.13), May 2020 0.02 10*9/L

Nucleated red blood cell count (should be zero), May 2020 0.01 10*9/L

As you can see in August 2019, my B12 levels were just in the normal range (by 1), however I am aware that these tests are not correct. My doctor did not seem concerned about it.

Thank you so much for your insight

Sleepybunny profile image
Sleepybunnyā€¢ in reply tobluetuesday1

Hi,

In UK, GPs are supposed to treat you if you are symptomatic for B12 deficiency even if B12 levels are within normal range.

Were you symptomatic in 2019 and are you symptomatic now?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

May 2020 436 ng/L

A result of 436 is not that high in my opinion if you were on B12 supplements at thsi time.

It's possible to have severe B12 deficiency with an in range B12 result. I speak from personal experience with majority of my b12 results between 300 - 500ng/L.

Link about letters to GP about B12 deficiency if symptomatic with a normal range B12 result.

b12deficiency.info/b12-writ...

Have a look at my detailed replies in the link to another thread in my other post.

Be warned:

Many GPs in UK and many specialist doctors eg neurologists and haematologists do not always have a good understanding of B12 deficiency.

B12 article from Mayo Clinic (US)

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

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful treatment should not be stopped

Is there a history of auto immune conditions in your family?

PA and Coeliac disease are both auto immune conditions that can lead to b12 deficiency.

A UK B12 document

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

If you're in UK, did your GP follow the above flowchart?

If there's any chance you might have PA, I suggest you join PAS.

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....

Blog post about how PAS can support PAS members seeking PA diagnosis

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

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.

Both these tests can be unreliable.

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% of people with PA test negative on PCA test.

If you're in UK, look at these guidelines on Coeliac disease

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Will try to add more tomorrow.

Sleepybunny profile image
Sleepybunnyā€¢ in reply toSleepybunny

A bit more ....

Risk Factors for PA (Pernicious Anaemia) and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Diet

Did GP ask you questions about your diet?

Do you eat plenty of B12 rich food eg meat. fish, shellfish, eggs, dairy, foods fortified with B12?

H Pylori infection?

patient.info/digestive-heal...

Any exposure to nitrous oxide?

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

Any chance of internal parasites eg fish tapeworm?

Do you ever eat raw or undercooked fish eg sushi/smoked salmon etc?

Other parasites that can lead to b12 deficiency include Giardia lamblia.

Search online for "B12 deficiency parasites" for more info.

Coeliac Disease

In UK, two first line tests are recommended...

1) tTG IgA checks for antibodies to gluten

2) Total IgA checks which patients have IgA deficiency

If you've been tested in past for Coeliac, did you have both tests above?

If you were tested, did GP ask you to eat plenty of gluten in more than one meal per day before blood was taken?

NICE guidelines on Coeliac Disease suggest that anyone with B12, folate or iron deficiency should be tested for Coeliac.

If you had a negative test result in TTG IgA test, the result may not be reliable

1) if the Total IgA test was not done

2) you were not eating lots of gluten before blood taken

Your folate results in May 2020 were within range but only just and your B12 results in August 2019 were borderline. I hope the GP considered Coeliac disease and PA as possibilities.

More B12 websites

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK although these are cancelled at moment. I believe there are some online meetings planned.

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Access to Blood test results (England)

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

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

b12deficiency.info/what-to-...

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...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

More UK B12 documents/articles

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

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

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 does not show updated BNF 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 (USA 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...

CAB NHS Complaints

citizensadvice.org.uk/healt...

There can be severe consequences if untreated or under treated for B12 deficiency including permanent neurological damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

Neurological Symptoms

Do you have any neurological symptoms eg

tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc?

Does your GP have a list of all your symptoms, especially any neurological ones?

See symptoms lists in other post.

In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.

Link about PN

nhs.uk/conditions/periphera...

Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

If yes to neuro symptoms, have you been referred to

1) a neurologist

2) a haematologist (see NICE CKS link)?

I feel it is more effective to put queries about treatment/diagnoses in a brief as possible, polite letter to GP. Letters to GPs in UK are ,as far as I know , supposed to be filed with medical notes so harder for GP to ignore them.

Letters could contain symptoms list, test results, relevant personal and family medical history, extracts from UK B12 documents, any other supportive evidence.

It's useful to have a paper trail in case there is a need for a complaint in the future.

Always keep your own copies of any letters written.

If GP/patient relationship becomes strained (some GPs don't like assertive patients who ask questions) then consider taking someone with you to appointments as a witness or contemplate changing GP practice.

nhs.uk/common-health-questi...

Impact of pandemic

If you suspect you may be B12 deficient or that PA is a possibility then I recommend seeking support from PAS or other B12 support organisations.

Getting B12 treatment during pandemic is difficult for many forum members. Many have had B12 injections cancelled/delayed/frequency reduced or swapped for oral tablets.

There are moves afoot in UK to move people permanently onto oral tablets.

If you want to know more about this then have a look at my detailed replies in this next link.

healthunlocked.com/pasoc/po.....

It includes links to recent PAS news items and blog posts from B12 Deficiency Info which have suggestions on how to cope if injections stopped/delayed/swapped for oral tablets.

If you think B12 deficiency is a possibility and you're in UK, I suggest you track down the local guidelines for treating B12 deficiency for your part of UK and compare them with national guidelines and articles links in my posts eg BSH Cobalamin and Folate Guidelines, BNF, NICE CKS etc.

Some parts of UK are using local guidelines that are years out of date and/or they don't reflect national guidelines.

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