Not sure I understand my blood result... - Pernicious Anaemi...

Pernicious Anaemia Society
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Not sure I understand my blood results [B12 & ferritin]

eca74200
eca74200
12 Replies

GP will not see me for another 2 weeks - I feel dreadful: super tired, anxious, snappy / irritable, I cannot wake in the morning, and I have lost a lot of hair.

I had a blood test last week - all thyroid tests (well, TSH and fT4, since fT3 was not done) came back ok - at 1.9 and 12, respectively.

Full blood count was "satisfactory" (I assume FBC includes MCV and Hb!?) and liver tests also. Folate is at 10, which is in range.

However, ferritin came back at 11, and B12 at 73.

I don't really understand how both B12 and ferritin can be so low, but Hb and MCV are fine?

Apologies for the ramble - I am just stumped and not sure what to do while I wait for GP to see me (is it safe to at least start on multivitamins and iron supplements?)

12 Replies
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clivealive
clivealiveForum Support

Hi eca74200

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If you have thyroid problems this may put you at risk of developing a Vitamin B12 deficiency.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

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eca74200
eca74200
in reply to clivealive

Thanks Clive - I'll read through. My GP is not particularly committed in seeing me through this little crisis, so I'll have to go and push!

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Galixie

B12 deficiency causes red blood cells to be enlarged and those larger than normal cells carry more hemoglobin. Iron deficiency causes red blood cells to be small and those smaller than normal cells carry less hemoglobin. When you have both deficiencies at the same time you end up with a mix of too small and too large blood cells, but the hemoglobin test only measures the overall amount of hemoglobin and, when you combine hemoglobin from the two types of cells, you get a result that appears to be a normal level.

The same thing happens with the MCV result because that test gives an average of the cell size. Too big and too small average out to normal.

If your doctor doesn't believe there is a problem that needs to be treated, ask for a blood smear test to be done. That is a test where they take a drop of your blood and create a slide that can be viewed under a microscope (by a real, live human being!). That test can show if there is a big variation in cell sizes indicating that two different anemias are happening at once.

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eca74200
eca74200
in reply to Galixie

that's really interesting Galixie - and does make sense!! thank you :)

So is it safe to start taking multivitamins / iron supplements until I see the GP?

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Marz
Marz
in reply to eca74200

Sadly you did not have the complete testing for the Thyroid. Do you have the range for the FT4 ? - ranges do differ from lab to lab - however on balance yours does look low which may indicate the Thyroid is struggling. Needs to be towards the upper part of the range to ensure a good level of T3. No anti-bodies tested TPO & Tg. Again the Lab may well refuse to test if the TSH is in range.

thyroiduk.org.uk/tuk/testin...

The above link takes you to companies that do Private Testing in the home - which enables you to have all the correct testing.

Multi-vits are not always a good idea - lots of fillers and ingredients and often not enough to make a difference. Then if you increase the dose you can overdose on some things. Best to have individual things tested. Your Ferritin needs to be mid-range for thyroid hormones to work well. Also Folate. VitD good around 100 if you are in the UK ....

I hope you soon have some B12 treatment along with everything else.

2 likes
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Highland49
Highland49
in reply to eca74200

No, particularly with b12, any supplements may give a higher false reading. Shame though as sounds like you really need something with that reading and symptoms! Good luck with getting sorted.

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eca74200
eca74200
in reply to Highland49

so should I just wait for the GP and not take anything?

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Highland49
Highland49
in reply to eca74200

Yes definitely best to wait otherwise you can't get a true reading once you supplement. Maybe ask for the mma urine test to measure b12? All the best.

Reply
Sleepybunny

Hi,

"Full blood count was "satisfactory" "

I suggest getting copies of all your blood tests including full blood count (FBC) may be helpful. I was told everything was "normal/fine" and then found abnormal and borderline results on copies.

Have you had an IFA Intrinsic Factor Antibody test?

This can help to diagnose PA (Pernicious Anaemia) but the test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range (this is called Antibody negative PA and is mentioned in BSH Cobalamin and Folate Guidelines).

Access to medical records (England)

nhs.uk/NHSEngland/thenhs/re...

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

nhs.uk/chq/Pages/2635.aspx?...

"I don't really understand how both B12 and ferritin can be so low, but Hb and MCV are fine?"

Low iron can lead to small red blood cells (microcytosis). Low B12 or low folate can lead to enlarged red blood cells (macrocytosis). A person with both low iron and low B12 may appear to have a normal MCV because the effects of low iron on red blood cells can mask the effects of low B12.

RDW

Have a look at your result for RDW (red blood cell distribution width) on the Full Blood Count. An increased RDW can indicate variation in the size of red blood cells eg the possibility of both microcytosis and macrocytosis at the same time.

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

Blood smear (also known as blood film)

A test called a blood smear might show the presence of microcytic and macrocytic cells in someone who has both iron and B12 deficiency.

labtestsonline.org.uk/under...

"B12 at 73."

Is that 73ng/L? in which case that would be very low. Do you have a reference range for B12?

Link about what to do next if B12 deficiency is suspected.

b12deficiency.info/what-to-...

Are you in UK?

UK B12 documents

BMJ B12 articles/documents

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BNF Chapter 9 Section 1.2

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

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

Useful summary of B12 documents in third pinned post on this forum.

UK B12 websites

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

If you suspect PA or Antibody Negative PA , may be worth joining and talking to PAS.

B12 Deficiency Info

b12deficiency.info/

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"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 book about B12 deficiency with lots of case studies.

B12 Deficiency Symptoms

pernicious-anaemia-society.... See Checklist PDF on right of page.

b12deficiency.info/signs-an...

Do you have neuro symptoms eg tingling, pins and needles, tinnitus, memory problems, balance issues plus other neuro issues?

In UK, people with b12 deficiency with neuro symptoms are supposed to get more intensive B12 treatment.

UK B12 treatment, see BNK links and BSH Cobalamin and Folate Guidelines for more info.

B12 deficiency without neuro symptoms

6 B12 loading jabs over 2 weeks followed by a jab every 3 months.

B12 deficiency with neuro symptoms present

A B12 loading jab every other day for as long as symptoms continue to improve ( could mean loading jabs for weeks even months) then a jab every 2 months.

If you have neuro symptoms make sure you are on correct treatment regime. Under treatment can lead to further deterioration.

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Link about writing letters to GP about B12 deficiency.

b12deficiency.info/b12-writ...

Point 1 is about under treatment of neuro symptoms

More links about blood tests

b12deficiency.info/b12-test...

patient.info/doctor/iron-de...

patient.info/doctor/folate-...

Lots more b12 info in pinned posts.

I am not medically trained.

2 likes
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eca74200

thanks all - I am going to try and get my results printed out today... let s just hope it ll be the good receptionist!

3 likes
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Marz
Marz
in reply to eca74200

Did you manage to get your print-out ? Also I would ask for additional thyroid testing to rule out Hashimotos. VitD levels ? - often low with low B12.

Reply
eca74200

thanks Marz - I went in and asked for the print out. I eventually got it! and my B12 is NOT 73 it is 773 - clerical error on reading my results - which is great in a way but does not explain how I feel.

There is no vit D tested, and T3 is printed on the sheet but the line is blank (not run?)

I am seeing the GP tomorrow to understand more.

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