I have Epilepsy, rheumatoid Arthritis but I also have four female family members with Pernicious Anaemia, I am feeling really ill at the moment- exhausted, faint, eye twitches, headaches, sickness, bad neck, joint pain your name it I pretty much have it symptoms wise, I can’t do normal daily activities without feeling like I am going to pass out.
After two years of my monthly routine bloods being abnormal, but the doctors ignoring it saying it’s normal for me, I finally I spoke to a duty doctor who looked at my bloods and said this isn’t right! Your RBC are abnormally large etc he said I want you to have B12 blood tests and folate tests and something about bone marrow.
However they came back today and a different doctor has looked at the results and apparently they have come back ok with No further action required- I don’t understand if I feel as ill as I do how it can’t be anything, I no I am anemic already I am getting confused how my results aren’t showing anything. Has anyone else faced this?
Is there any way you could get a print out of the results of the B12 test. It may be that the doctors don't realise the limitations of the serum B12 test in that it will miss 25% of people that are B12 deficient if it is used as a single measure.
The reference to bone marrow may be to do with the fact that lack of B12 in your bone marrow means it doesn't reproduce red blood cells properly, resulting in macrocytic anaemia where your red blood cells are enlarged - the same is true if you have a folate deficiency.
Think most of us on the forum have experienced problems with medics not understanding how to interpret blood cells properly and in context.
Are you based in the UK or somewhere else - just that protocols for diagnosis and treatment vary from jurisdiction to jurisdiction so it helps to know where you are based.
I have Loss of cervical Lordosis and mild kyphosis of the spine but that was diagnosed from an X-ray , but they can’t explain why, if you have neck pain aswell that’s interesting, I am 35 xx
Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. Makes it clear that people who are symptomatic for B12 deficiency should have an Intrinsic factor Antibody test and start B12 treatment.
Have you had an IFA test?
Some UK GPs may not be aware that it is still possible to have PA even if IFA test result is negative or normal range.
BNF (British National Formulary) Chapter 9 Section 1.2
UK GPs will have access to BNF, probably a copy sitting on their desk. Possible to get own copy. BNF suggests that advice from a haematologist should be sought for people with B12 deficiency with neuro symptoms.
Recommended UK treatment for b12 deficiency without neuro symptoms is 6 loading jabs over 2 weeks then a jab every 3 months.
For B12 deficiency with neuro symptoms (eg tingling , pins and needles, tinnitus, tremors, balance issues, memory problems plus others), it's a loading jab every other day for as long as symptoms get better (this could mean loading jabs for weeks even months) then it's a jab every 2 months.
Summary of B12 documents
Useful summary of mainly UK B12 documents in third pinned post on this forum.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.
"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 book about B12 deficiency with lots of case studies.
"a different doctor has looked at the results and apparently they have come back ok with No further action required-"
Have you seen the actual results or were you just told they were ok?
I learnt to always get copies of all blood test results after being told everything was fine and then finding abnormal and borderline results on the copies. Some UK surgeries offer online access to a summary record but this is just a summary and may not have all the required info.
Consequences of Untreated or Under Treated B12 Deficiency
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Neurologists
If you have neuro symptoms, have you seen a neurologist?
B12 deficiency can cause a variety of neuro problems. One is problems with proprioception (awareness of body in space).
I saw various neurologists and not one of them appeared to test for proprioception problems. One test is to walk heel to toe with eyes closed and I think another is called romberg test. Very important that these tests are only carried out by a qualified doctor due to risk of falling and loss of balance.
Coeliac Disease can lead to B12 deficiency because it can affect the gut and therefore can cause absorption problems.
Yes. My b12 levels get high after I load up on it, but I still have symptoms. Usually when I start dosing?
Think it's the same with other issues. Tests say I'm fine, but symtoms say otherwise ? Maybe the right type of test is needed.
Have you tried chewing green cardamom? I believe it helps with anemia. U can look it up. Please be careful of course. Not an expert on this lol. Believe it speeded up my recovery.
Think it's safe to use, but please check with the experts.
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