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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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.
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
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.
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
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).
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.
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