Diagnostic tests

[Auntbessy]

Hi everyone, I was wondering which tests people had to reach their diagnosis? I have many of the symptoms and a raised MCH. However, my intrinsic factor test just came back negative today. My B12 levels tend to be around 250. I also have Hashimotos Thyroiditis. My GP says she thinks I don't have PA and that it's having a raised MCV which is the real worry.

[wedgewood]

I hope that your doctor realises that a negative Intrinsic Factor Antibody test does not necessarily mean that you don’t have P.A. About 50% of P.A. patients get a negative result . You doctor can find this information in scientific papers . Also , having a raised MCV ( enlarged red blood cells ) is a symptom of P.A. These immature cells are too large to pass through cell walls , resulting in terrible fatigue and breathlessness etc .

Pernicious Anaemia is an autoimmune condition , and as such seldom comes alone . Hashimoto’s thyroiditis is the most common accompanying autoimmune condition with P.A. , but there are many others ( I have Rheumatoid Arthritis as my companion condition , but there are many more). A raised homocysteine level is another symptom with P.A. , but can have other reasons as well .

Hope this helps .

[Seth12345]

Your B12 level of 250 qualifies as a deficiency. Is your MCV elevated? This could indicate macrocytosis, which is not good.

What symptoms do you have?

[FlipperTD]

A bit of science here...

MCH is derived from (Hb/RBC). MCV is nowadays measured directly, and the Hct is derived from (RBCxMCV). This allows us to derive the MCHC, from (Hb/Hct), so they're all intrinsically linked. When the MCH is raised, it's usual that the MCV will be too, although with reference ranges, one might be inside, and the other outside. The ranges are 95% limits, so 1 in 20 'normals' may be outside the 95% range whilst still being 'normal. If your B12 level is maintained aroud 250 without injections then it sounds like you're absorbing from your diet, and your negative IFAb result supports that. However, as with autoimmune conditions, like buses, you never know when another one will arrive so it's as well to keep up a good relationship with your doctor. You will learn from each other!

Reduced thyroid function can be associated with macrocytosis, unassociated with either B12 or folate.

Don't worry about 'large red cells' as they're incredibly deformable little beasts, and can get through holes in the spleen much smaller than the red cell's dimensions, [that's all to do with their biconcave disc shape] and they tend to work pretty well at oxygen and carbon dioxide transport too.

Don't worry, and listen to your doctor.

[Auntbessy in reply to FlipperTD]

Hi FlipperTD, sorry for the delay in getting back to you! I really appreciate your informative replies. I had a quick glance at my MCV and it is always between 95 and 99.5 between the years of 2014-2020. The range is 80-100.

[FlipperTD in reply to Auntbessy]

Hi. So, you've never actually been macrocytic in terms of the general range they use, although you're near the top. I know there's some association between MCV and thyroid disease that isn't down to either B12 or folate, but I don't know exactly what causes it! [Whether anyone really knows is another matter.] Given that you're not macrocytic, and your results aren't moving anywhere, in the words of Lance Corporal Joe Jones in Dad's Army, 'Don't panic!'

I suspect you're reasonably well-nourished, and if your results don't change over time then simply keep up the good work, keep in touch with your GP, and keep an eye on your blood results. The labs issue so many different numbers that it's reasonable to assume that you, the patient, probably take more notice of them than the GP. Of course, some of the numbers are on the limits of 'information' so are often better ignored. Labs don't issue most of the numbers generated, because they don't understand them either. Once upon a time, a Full Blood Count consisted of a few items, whereas now, the analysers can produce upwards of a hundred. [no, honestly.] Is it any wonder it can be confusing?!

Keep well, and keep smiling. It drives everyone else crazy, and that's why I do it. Thanks for getting back to me.

[fbirder]

Your B12 level of 250 may be close to deficient or it may be well above the 'intermediate' range. It's not possible to say without knowing the range. In Hull and East Yorkshire, for example, they class anything below 115 pmol/L as definitely deficient and between 115 and 150 pmol/L as intermediate, so a B12 deficiency needs to be considered. hey.nhs.uk/wp/wp-content/up...

At 250 pmol/L they would only consider a deficiency if you had obvious symptoms.

[wedgewood]

When I replied to you , I assumed that you have symptoms of P.A. , as I could only imagine that you would come to this forum if you had . Do you have symptoms of P.A.

[Leils]

I had a test for coeliac antibodies and that came back borderline positive even though I had been avoiding gluten so I now follow a strictly gluten free diet. You may already know about this with hashimotos though?

[Sleepybunny]

Hi,

From personal experience, I know it is possible to have severe B12 deficiency symptoms with an in range serum B12 result.

It's still possible to have PA even if your intrinsic factor antibody test result is negative.

Have you considered joining PAS if you suspect PA?

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....

No meetings during pandemic.

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.

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.

Have you been tested for Coeliac disease?

If you were tested in past, did GP

1) do both recommended tests?

tTG IgA and Total IgA

2) ask you to eat plenty of gluten in more than one meal per day for several weeks before blood was taken?

NICE guidelines Coeliac disease suggest anyone with unexplained B12, folate or iron deficiency should be tested.

NICE guidelines Coeliac Disease

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

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 a process for diagnosing PA and Antibody Negative PA in UK.

It's possible that your GP is not aware that it is possible to have Antibody Negative PA.

Useful B12 book

"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 in above book is out of date. See BNF link below for up to date info.

BNF Hydroxycobalamin

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

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic with an in range serum B12 result.

Have a look at my replies in the thread I linked to below which has links to symptoms and causes of B12 deficiency, more B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might be useful.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest.

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

I am not medically trained.

[Auntbessy in reply to Sleepybunny]

Thank you this is all very helpful! I cannot eat gluten. I removed it from my diet when I was in my early 20's (now 40) as it caused so many physical and emotional problems. I've never been tested for a gluten allergy because I cannot eat a regular diet without getting severe reactions. I'm currently taking high strength methylated B vitamins to see if my symptoms decrease. My GP said that my B12 level is good and that the B vitamins will not make much difference to my current level.

[Sleepybunny]

Hi again,

"My GP said that my B12 level is good "

My b12 levels were well within range eg 300 - 500 ng/L but I had over 40 symptoms , most of which were typical of B12 deficiency.

My understanding of the BSH guidelines is that if a person is symptomatic for B12 deficiency with other causes of symptoms excluded, they should be treated even if their serum B12 level is within range.

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.

Letter to GP if symptomatic for B12 deficiency with an in range B12 result.

b12deficiency.info/b12-writ...

[Sleepybunny]

Hope you find the answers you need and have a caring GP.