Consultant said that he thought I was developing pernicious anaemia and as my grandmother had had it, it was quite likely. He advised GP to give me B12 injections.... But GP didn't think my levels were low enough 125....
Anyway long story short, the whole thing was upsetting and stressful.
In the end I requested an Intrinsic factor test which proved I had PA. Now I'm not sure what that test is actually called it may have a technical name and I am sure someone on here will be able to tell you.
I can only say keep on at them, I know it's tiring, but you have to for your own sake!
Anti-Intrinsic factor antibody test ( IFab, IFA ). This test is to look for an antibody that targets the intrinsic factor (IF) required for the body to absorb B12 from food (which is the extrinsic factor).
The BCSH (haematologists) say that if this test proves positive it is 95% certain you have pernicious anaemia. BUT also say that it is only positive in 40-60% of cases -so a negative result cannot rule out pernicious anaemia. So, positive is PA, negative still might be !
Martyn Hooper, who is the founder of the Pernicious Anaemia Society had the test three times before getting a positive result. Someone with only one chance at this might decide that this is not the test for them because a GP might use a negative result to prove that the patient does not have PA- in spite of (or ignorance of) what BCSH have to say !
Hi, it is normal for B12 levels to go up high after loading injections- over 2000 isn’t unusual. Drs shouldn’t check levels again- don’t let them stop future jabs. The B12 needs folate to work properly. I would look at a good B complex- methylated is preferable. If not enough folate in mix (400mcg) then take one separately too.
Your ferritin is still too low. You would appear to not be absorbing nutrients properly. Improving digestion is a start - digestive aid /herbal bitters before every meal.
The whole point of loading dose is to rapidly boost your depleted B12, and then once B12 replete, the maintenance injections are administered at a frequency which will keep you from deteriorating again.
So unless there is a dietary reason for your initial low level, which after loading can then be treated by eating more B12-rich foods or by tablets, there seems no reason to stop the injections -or to measure them again in your bloodstream.
If you have pernicious anaemia, you will always have pernicious anaemia. Even if your B12 level is over the measurable amount (usually 2000 ng/L). There is no cure, and so B12 injections will be required for life. You will usually get injections at a frequency of 2-3 months.
There are some other reasons for a low B12 level, and the symptoms will be exactly the same - those of B12 deficiency - but some causes can be cured. Like small intestine bacterial overgrowth (SIBO) which can be treated with antibiotics, sometimes needing quite a few courses to eradicate.
If your GP does not think you have PA, what does he think is the reason for your B12 deficiency ? How has he ruled out PA as the cause ? If he hasn't, then why would he stop treatment ? These are all fair questions, if it really is his intention to stop your injections.
Do you have any neurological symptoms ? In this case, injections should continue, every other day, until no more improvement can be gained - and only then maintenance injections every 2 months. Nerve damage can take a while to repair, and if left, some damage may remain. If not treated at all, neurological symptoms can worsen.
I had bowel cancer and a right hemicolectomy and have been diagnosed with Bile Acid Malabsorption. I was under a gastroenterologist who was sure he knew it was SIBO but because I could not tolerate the anti biotics he has transferred me to a regional specialist centre for further investigation. Before doing that he sorted the B12 loading and wanted the GP to sort out my Vitamin D levels but I can not tolerate oral medicine so he tried me on Baby Vitamin Drops but I came out in a rash at the back of my neck. Because this was straight after the B12 injections He is unsure and stopping the Vitamin D drops. He is banking on the Gastroenterologist The GP has put the B12 on every 3 months for life
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place. You may need it in the future.
Each CCG/Health Board/NHS Hospital Trust in UK will have its own local guidelines on treatment/diagnosis of B12
I suggest you track down the guidelines on treatment/diagnosis of B12 deficiency for your area of UK and compare them with BSH,NICE CKS and BNF links above .
Some areas of UK have guidelines that can be unhelpful. See blog post below.
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 but sadly some doctors may be unaware that it is possible to have Antibody Negative Pernicious Anaemia.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
B12 books I found useful
"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 in book is out of date. See BNF link in this reply.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Copies of above books may be available from local library services.
Vital to get adequate treatment or there is an increased risk of permanent neurological damage including problems with spinal cord.
May be worth drawing doctor's attention to this possibility in any letter or conversation if patient has concerns that they are being under treated.
Has your GP/doctor got a list of all of your symptoms especially any neuro symptoms and symptoms affecting your spinal area? See links to symptoms lists up page.
If neuro symptoms present, has your doctor
1) referred you to a neurologist?
2) referred you to a haematologist?
Some UK forum members who cannot get treatment from NHS or whose level of NHS treatment is not enough to keep symptoms at bay, resort to self treatment using B12 ampoules sourced from Europe and some use private GPs.
I've written some very detailed replies with more B12 info eg more B12 articles, b12 websites etc
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
B12 loading doses and stomach pain; also 10mg melatonin OK to take on loading doses?
GP Stopped my 3 monthly B12 Injections
GP problems
