Advice welcomed pls. : I’ve had all the... - Pernicious Anaemi...

Pernicious Anaemia Society

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Advice welcomed pls.

Samsungtracy profile image
5 Replies

I’ve had all the classic signs of low b12 for about 18 months had 6 different drs involved and none really paid close enough attention to my symptoms which I think is typical of b12 deficiency diagnosis.

Anyway I had privet and nhs blood work done ,

My b12 came back low at 35.1 pmol/L

I was wondering what’s a good level ?

Also my transferrin is high as is my mch so englaged red blood cells. .

Does anyone know apart from low b12 what picture this is building with the other results factored im?

I make the assumption that as I’m lacking b12 my red cells have enlarged to increase capacity ?

Any advice welcomed , also if anyone can recommend a good haematologist I would welcome the advice.

If you can answer any part of these questions I will be greatful .

Regards

Sam

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5 Replies
Sleepybunny profile image
Sleepybunny

Hi,

I notice your B12 result was 35.1 pmol/L

Was this serum B12 or Active B12 (also known as HoloTC/Holotranscobalamin)?

If it was serum b12, that seems very low to me about 48 ng/L.

If it was Active B12, it also seems low to me.

Example of ref range for Active B12

viapath.co.uk/our-tests/act...

If you suspect PA, worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

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

b12deficiency.info/what-to-...

Suggest you read these next links before your next appointment.

BSH Cobalamin and Folate Guidelines

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

BNF Hydroxycobalamin

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

NICE CKS B12 deficiency

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

Local Guidelines

Each CCG/Health Board/NHS Trust is likely to have its own local guidelines on treatment and diagnosis of B12 deficiency. I suggest you track down the local guidelines for your area and compare them with BSH, BNF and NICE CKS links above.

Unhappy with treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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

Point 1 in above link is about under treatment of b12 deficiency with neuro symptoms.

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

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...

Vital to get adequate treatment if B12 deficient. Untreated or under treated B12 deficiency can lead to permanent neurological damage including problems with spinal cord.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

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 for up to date info.

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

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 if you're UK based.

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

Latest PAS news item about contacting NHSE about treatment concerns during pandemic

pernicious-anaemia-society....

I started a thread about this in last few days which has some useful contact details.

healthunlocked.com/pasoc/po...

I am not medically trained.

Samsungtracy profile image
Samsungtracy in reply toSleepybunny

Hi thanks for your reply,My b12 was active b12

Cherylclaire profile image
CherylclaireForum Support in reply toSamsungtracy

In the first link above from Sleepybunny, it seems Viapath consider low active B12 would be anything below 70, with advice for results of 25-70 to check MMA. Methylmalonic acid links with B12 as part of the process - if MMA in blood is high, it means that it has built up because there is insufficient B12 in the boodstream. There are other reasons for MMA to be high, which would have to be ruled out by testing, but would provide confirmation of B12 deficiency if needed. MMA should, under normal circumstances, drop back fairly quickly to within normal range after B12 repletion - certainly after loading dose injections completed.

If you have not yet had an MMA test and have not yet had B12 injections, this could provide the second confirmation (if required) of a B12 deficiency.

Enlarged, immature red blood cells would also be a strong indicator - not all of those with B12 deficiency/PA have this, but you have mentioned high MCH in your post.

This, together with a list of your symptoms, could be enough for your GP to make a decision, but if not, MMA tests are available on the NHS - although easier for a haematologist to access. A GP can get a test done (mine managed it) -but would likely need to go through a major hospital lab. My GP had her request returned three times. Most GPs might well have given up by this point.

While waiting, you might want to have a look at the other links provided - particularly the medical guidelines for treatment listed.

Samsungtracy profile image
Samsungtracy in reply toCherylclaire

Hi,

I just had my nhs results back ,

They annoyingly didn’t test active b12.

But did test serum b12 which came back as high.

So my active b12 is low ana my serum b12 is low , is there a diagnosis for that ? Is it functional or functioning anaemia in not sure .

I have historical high transferrin saturation and high mch meaning my red blood cells are enlarged. All my other stats are good.

I injected b12 on Sunday and the fatigue has all but gone, I still have tinnitus that is related I think as I’ve had may ears tested recently .

Cherylclaire profile image
CherylclaireForum Support in reply toSamsungtracy

I'm not a medical professional, Sam.

Your reply says that your serum B12 is high, but in the next sentence you say that it is low. If you are self injecting (which it seems that you are) you can expect your B12 to be high, so I'm assuming you meant that your serum B12 result came back as high ?

I have had active B12 tested before - but this was arranged by a haematology consultant, not my GP. Recent self injections would also be likely to give you a high result, since it would be measuring the injected B12 in your serum.

Perhaps having your MMA (methylmalonic acid) and homocysteine tested would give you more to go on, if either come back raised. Again these tests can be more easily accessed by an NHS consultant, a haematologist probably, rather than your GP. But you will need your GP to refer you.

A copy of the first link in Sleepybunny 's reply might help you there, since it suggests with your result that your next test should be for MMA.

What does your GP make of your low active B12 result and high mch result ?

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