I'm after a little advice and reassurance that I'm not going insane!
I have recently been tested for coeliac, which thankfully came up negative but as a result has highlighted the following
B12 -149 , Folate 11 , low platelet count and large red blood cells . I tested negative for antibodies for Pernicious Anemia . My doctor has started me on B12 injections ( loading dose ) so an injection every other day over the next week or so .
I feel worse than ever. I am permanently exhausted with a variety of stomach issues plus concentration and memory loss . The nurse said the B12 injections kick in within 24 hours which is why I can't understand how I feel so terrible ..is this normal ?
Any experience on this would be fantastic thanks in advance Kerry x
Written by
Kerry122514
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It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.
Both iron and folate may be needed so please have these levels checked by your doctor.
I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years and I'm still "clivealive" at 77.
One problem is that we patients seldom come across doctors and nurses that are suffering the same illnesses we are.
I was once "laughed at" by a "one size fits all" doctor who said that the neurological symptoms that I said I had return in the run up to my next four weekly scheduled injection "couldn't be due to my Pernicious Anaemia because I was getting the B12 every month".
I'm often thinking the same. It's a shame, in that respect, that we're not contagious, specifically re HCP, then they might know what we're saying and, subsequently, being much more sympathetic and keen to treat effectively and as an individual
"I have recently been tested for coeliac, which thankfully came up negative "
Which tests did you have for Coeliac Disease?
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease. If you only had the tTG IgA test I don't think doctors can be sure you do not have Coeliac disease.
A person with IgA deficiency (total IgA test checks for IgA deficiency) will not produce antibodies that tTG IgA test checks for.
"I tested negative for antibodies for Pernicious Anemia"
It is still possible to have PA even if Intrinsic factor Antibody test result is negative or normal range. See flowchart link and BSH Guidelines link further down page.
Infection with fish tapeworm can lead to increased eosinophils (a type of white blood cell). Eosinophil levels can be seen on a full blood count (complete blood count in USA).
Have you had any surgery that involved use of nitrous oxide?
"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 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 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".
B12 websites
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members from around the world.
Memory problems would usually be considered as neurological. Do you have other neuro symptoms eg tingling, pins and needles, balance problems, tremors, tinnitus? See Symptoms lists links.
NICE CKS link above recommends that in UK, doctors seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. If yes to neuro symptoms, has your doctor written to a haematologist?
Have you been referred to a neurologist?
"loading dose ) so an injection every other day over the next week or so"
Recommended UK B12 treatment for B12 deficiency without neuro symptoms is.....
6 B12 loading jabs over 2 weeks followed by a jab every 3 months
Recommended UK B12 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.
If in UK, which pattern of treatment is your doctor planning to use?
See BNF, NICE CKS and BSH links for UK treatment info.
If yes to neuro symptoms, it is vital you get right level of treatment. Untreated or under treated B12 deficiency can lead to further deterioration including a risk of spinal damage.
Sadly, many forum members have found that knowledge of B12 deficiency is not as well developed as it could be amongst GPs and specialist doctors. I found it pays to be well-informed.
Help for GPs
1) PAS website has section for health professionals. They can join PAS for free as associate members.
2) There is a leaflet "An Update for Medical Professionals: Diagnosis and Treatment " available only to PAS members, which some on forum have passed on to GPs.
With regard to coeliac , I had both the antibodies test done both came back normal !
I did read that not everybody has antibodies but as I'm already completely gluten free it was more to eliminate so they would test for alternatives than to prove I was .
I completed a gluten challenge for 6 weeks to complete the test !
I'm not pushing for any further testing as I'm already completely gluten free .
I have also read that not everybody tests positive for PA but my doctor seems to think that's what's causing the b12 deficiency hence injections instead of pills .
My diet is very healthy , I am overall healthy but have always had borderline iron levels treated with iron supplements ..non of which made any difference to how I felt .
I think this issue has been going on for a number of years .
I really appreciate all the info in your reply ...I'm going to have a good look into all of it .
I thought my issues were down to having a very busy lifestyle and had no idea a vitamin could make such a difference .
Fingers crossed I start to feel the benefit soon , Ireally haven't got time for being poorly or the option to take time out of work ( I'm self employed ) so I'm just going to get on with it for as long as I can 😫
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