Hi, I have been diagnosed with Pernicious Anaemia B12 deficiency and had my first injection yesterday, gotta go back to docs over the next 2 weeks for 5 more. Feeling very low at mo as never knew anything about this until blood test results from Coeliac clinic and didn't realise it was 6 injections over 2 weeks. I now have 4 auto immune diseases 1) Diabetes type 2, 2) Hypothyroidism, Coeliac and now PA. I'm beginning to feel that I have fallen apart over the last 10 years if first being diagnosed with Diabetes. I got use to eating as a diabetic with hypothyroidism, then I was diagnosed with coeliac 2 years ago and everything has gone to pot. Now only yesterday diagnosed with PA. REALLY what else can go wrong?
Any advise would be appreciated.
Marion
Written by
Mazimoo65
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Sounds like you have alot to deal with. Unfortunately if you get one condition your risk goes up for other autoimmune or similar conditions. It must feel overwhelming. Hopefully a good nurse consultation will help you with the overall management. One of my daughters has a balancing act. The coeliac diet with help your other conditions. 'Deliciously Ella' have load's of good recipes I've made. A dietician or nutritionist can also help you. Hope your b12 injections help you pick up . I realise it's difficult if you able to eat out but is doable. Hope you are feeling better soon and more able to deal with it all.
B12 deficiency is common in celiac patients who are not strictly gluten free. The damage caused by celiac disease leads to a lack of ability to absorb nutrients. Were you diagnosed with PA by a positive intrinsic factor antibody test?
If you were found to be deficient in B12 and no other testing was done, it possible that the deficiency is a result of the celiac disease. If it is a result of celiac, once you've maintained a strictly gluten free diet long enough for your gut to heal, it's possible that you will be able to absorb B12, and other nutrients, normally again.
Sorry to read that you're having a hard time.There is support on this forum and via various organisations.
"didn't realise it was 6 injections over 2 weeks"
I'm assuming you're in UK.
Recommend that you read all the UK documents further down this post if you're UK based.
UK treatment for B12 deficiency without neuro symptoms is ....
6 b12 loading jabs over 2 weeks followed by a B12 jab every 2 or 3 months.
UK treatment for B12 deficiency WITH neuro symptoms is ....
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
Do you have any neuro symptoms eg tingling, pins and needles, tremors, numbness, limb weakness, memory problems, balance problems, tinnitus, word finding difficulties?
If yes to neuro symptoms and in UK, my understanding (I'm not medically trained) is that patients should be on second pattern of treatment. As far as I know this pattern applies what ever the cause of the B12 deficiency if neuro symptoms present.
After you have had your 6 injections over 2 weeks, how often is GP planning to give you B12 injections?
It's vital to get correct level of treatment as there can be a risk of permanent neurological damage including spinal problems if treatment is inadequate.
I'm curious to know if you have been tested for PA. In UK, this would be an Intrinsic Factor Antibody test (IFA). IFA test is not always reliable and it is still possible to have PA even if IFA result is negative.
Metformin, a diabetes drug has been associated with B12 deficiency in some patients.
Any concerns over medication should be discussed with GP.
NICE guidelines Coeliac Disease (2015 version) UK document
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not mention recent BNF change.
"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 (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries.
B12 deficiency due to PA or other causes is not always as well understood by GPs and specialists as it could be. My main advice would be to do some reading about B12 deficiency in case doctors haven't.
With a diagnosis of PA, worth considering joining PAS (Pernicious Anaemia Society) who can offer support and info.
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Help please, new diagnosis
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