What tests to choose: I was diagnosed... - Pernicious Anaemi...

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What tests to choose

Mag999 profile image
5 Replies

I was diagnosed with b12 deficiency I self inject monthly but recently collapsed with symptoms of severe anaemia. Waiting for fbc via gp but want to add active b12 from private testing. I have to have venous sample as I never can fill the tube from fingerprick and the nurse is happy to fill tubes but I don’t know what else to add without spending lots. I will try and get them to do iron but was only done in June I feel very fatigued and unwell. I don’t feel they have got to the bottom of why I am so deficient in vitamins I also have to supplement D all year round or it disappears.

Any tips on most useful tests gratefully received.

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Mag999
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5 Replies
Nackapan profile image
Nackapan

I would wait filor the full bloods results the Gp ordered. Thatt will include iron.

If you are on B12 injections you really do not need yo waste your money on a b12 level test .

It will be high.

Do you perhaps need more b12 injections?

Was your folate in June tested ,ferritin. ?

I need a maintenence doses of iron , vitamin d all yesr round.

I ajsi gave a standard multivid as I font know what I'm abdorbjnvbirvnot at times.

I take iron under the instructions of Gp and by blood results.

All bes since b1e was on my boots and I collapsed/ funny turn./

vertigo.

Very Low vit D found a yesf or do earlier do gave supplemented since .

Still only Judy stay bobbing just 'in range '

Sleepybunny profile image
Sleepybunny

Hi,

Do you know what type of anaemia you have?

It's possible to have more than one type of anaemia at the same time.

Has your GP ordered a full panel of iron tests?

Iron Studies

labtestsonline.org.uk/tests...

Have you got recent results for folate?

Both folate deficiency and B12 deficiency can lead to macrocytic anaemia ( a form of anaemia where the red blood cells are enlarged).

Iron deficiency anaemia can be microcytic anaemia, where red blood cells are smaller than normal

"I was diagnosed with b12 deficiency I self inject monthly"

Are you getting any NHS treatment for your B12 deficiency?

BNF Hydroxocobalamin

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

The links below are aimed at health professionals and may contain unfamiliar words and details that could be upsetting.

NICE CKS Iron deficiency anaemia

cks.nice.org.uk/topics/anae...

NICE CKS B12 deficiency anaemia and Folate deficiency anaemia

cks.nice.org.uk/topics/anae...

"don’t feel they have got to the bottom of why I am so deficient in vitamins "

Link about "What to do next" if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

When you were diagnosed with B12 deficiency, what did your GP think had caused it?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Diet

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

If yes to B12 rich diet then diet as a cause of B12 deficiency is less likely and it is more likely that there is an absorption problem in the gut.

PA

Have you been tested for PA (Pernicious Anaemia), an auto immune disease that can lead to B12 deficiency?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

PAS website has useful leaflets

pernicious-anaemia-society....

Coeliac disease

Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

NICE guidelines Coeliac Disease

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

More info on Coeliac UK website

coeliac.org.uk/home/

If you were tested for coeliac in the past and had a negative result, did GP

1) also order Total IgA test which checks which patients have IgA deficiency

2) suggest eating plenty of gluten in more than one meal per day for several weeks before blood tested?

People with coeliac disease can get a negative result in tTG IgA test (which looks for antibodies to gluten) if they have IgA deficiency and also if they weren't eating enough gluten prior to testing.

Any exposure to nitrous oxide (also known as laughing gas)?

Nitrous oxide is a gas that inactivates B12 in the body. It is sometimes used as part of pain relief/anaesthesia.

Nitrous Oxide

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

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Did GP test you for H Pylori infection?

H Pylori infection

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

Any chance of internal parasites eg fish tapeworm?

Have you ever eaten raw or uncooked fish?

Have you ever lived or stayed in an area where internal parasites are common?

There are other parasites such as Giardia Lamblia (also known as beaver fever) and other parasitic worms that have been associated with low B12 levels.

One potential sign of a parasitic infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found in Full Blood Count results.

Medicines/Drugs

Has your GP reviewed any medication you are on?

Any concerns about medication should always be discussed with a doctor.

Some medicines and drugs have been associated with low B12 levels eg metformin, a diabetes drug, PPI drugs, some anti epileptic drugs and there are others.

Some medicines/drugs have been associated with low folate levels.

Referrals

If you have neurological symptoms, have you been referred to

1) a neurologist

2) a haematologist

If gut symptoms present, have you been referred to

3) a gastroenterologist

Link below explains when a patient with B12 deficiency or folate deficiency should be referred to a haematologist and gastroenterologist

cks.nice.org.uk/topics/anae...

Links below are to forum threads where I left detailed replies with lots of B12 info which you may find useful eg causes and symptoms of B12 deficiency, UK B12 documents, more B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Mag999 profile image
Mag999 in reply toSleepybunny

Thank you super thorough! I’ve had lots of tests but symptoms not resolving so I will look into referral maybe as have not seen a specialist apart from neurologist who was v dismissive. Am wondering about autoimmune gastritis as I also have d deficiency, low normal folate despite supplements. I know may just need to up all the supplements but I would like to feel I’ve been properly looked at as am so disabled by symptoms my life has been on hold for 15 months

Sleepybunny profile image
Sleepybunny

Hi,

"have not seen a specialist apart from neurologist who was v dismissive. "

I'm sorry you had that experience but can empathise as had difficult appointments with neurologists.

B12 deficiency is not always well understood by some GPs and some specialists.

"I’ve had lots of tests "

Have you accessed your medical records to see what tests were done?

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

If GP won't test for PA and Coeliac disease, it's possible to get these tests done privately in UK. GPs often won't accept results from private tests but a result that shows something significant may be enough to nudge them into ordering the same tests on NHS.

Link below suggests leaving at least 48 hours and up to 2 weeks after a B12 injection before doing Intrinsic Factor Antibody test (IFA/IFAb).

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

FlipperTD profile image
FlipperTD

Scientist, not medic.

I have said this before, but fingerprick tests are not the best starting point for blood analysis. In some circumstances, yes, if we had to, but in my experience, we only used them when we had to. In small children, for some things, but even then we would try our hardest to get decent venous samples.

As for vitamin D, it seems like we're all deficient. In Winter, it's even more of an issue. Speaking purely personally, I don't think I'd spend money on private blood tests either, but as I said, that's a personal stance.

Sleepybunny mentions diet. This is very important. A chat with a dietitian could be helpful. We can easily fall into the trap that it's purely about weight loss, but it isn't! They are highly skilled professionals and an HCPC-registered dietitian would be worth considering, and might be able to help.

Sorry I can't be more helpful!

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