Pernicious Anaemia Society
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Help. First time posting, understanding blood tests

Help. First time posting, understanding blood tests

I would appreciate your advice on these. Im 24 now and at 18 was diagnosed with chronic fatigue syndrome. I have been back and fourth to the doctors with no real help, like my mum who is struggling with hypothyroidism.

My symptoms are varied, however the exhaustion for me is particularly bad.

I ended up getting bloods done privately and found out i had very low vit b12 and vit D deficient. Because of this, the doctor has put me on 1ml vit B injections, 6 over 2 weeks and 3200ui D supplement and then a blood test in 12 weeks. 

Before i started my injections the doctor wanted new bloods done (didnt trust the private ones it seemed) and they are the ones below in the photo.

Is anyone able to shed any light?

My serum adjusted calcium concentration is below range too?

5 Replies

I cannot read your test results Yvett (on iPad they are too small to read) but, with very low B12 levels, "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml" .

I hope this extract from the BCSH guidelines will help persuade your GP to take your symptoms seriously as CFS/ME is a lazy diagnosis and neurological symptoms, which you have, should be treated without delay with injections to avoid irreversible damage.

As you probably already know B12 def. and autoimmune thyroid disease are often interlinked and symptoms overlap.  

BCSH, NICE and UKNEQAS all have guidelines on treating B12 def:

"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

This helpful site also has templates and advice on writing to your doctor:

This is what Martyn Hooper had to say about CFS/ME in the House of Lords in June of last year:

"Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands".

If you haven't already seen it, you could also write or email the latest BMJ research document to the surgery. This is given below and gives up to date guidance on treatment:

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance." 

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

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

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

*It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

The above UK research document is supported by many research papers and is peer reviewed. It also tells your GP that, once b12 treatment is started, the test results don't mean anything and further testing is not required - see bottom of page 4 under:

'How is Response to Treatment Assessed":

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment and retesting".

It is the clinical condition of the patient that matters.....

PS. It is important to also take K2 when supplementing with higher doses of vitamin D3 , as this will ensure D3 goes into your bones and not the blood.


I think the low calcium is probably due to vitamin D deficiency. But you should probably get it checked again next time you get your vitamin D level checked.

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Sorry not able to help but hope you get better soon x

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Re. Connection with thyroid disease, see BCSH Guidelines - bottom of page 6 under:

B. Tests to determine the aetiology of cobalamin deficiency

"Pernicious anaemia is one of a number of autoimmune diseases, including Hashimoto’s disease, type 1 diabetes, vitiligo and hypoadrenalism, which may coexist together (Chanarin 1972, Dittmar and Kahaly 2003, Perros, et al 2000, Toh, et al 1997). Antibodies against specific tissue antigens can help to diagnose specific conditions...."

FBirder's useful also summary gives links to BCSH, NICE, etc. guidelines and BMJ research on B12 deficiency:


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