I have been suffering with fatigue, heart palpitations, numbness in fingers for about a year. I recently had bloods done with doctor as my gamma GT levels were high. I was told to stop drinking for a month and then tested again (they came back higher). I then had much more extensive blood testing and was found to have helicobacter pylori and doctor also found the antibody for pernicious anaemia - I have also suffered from vitiligo for about 10 years. My doctor has said I am not anaemic and therefore not suggested any further treatment apart from getting a blood count done every 2 years.
I have since been treated for the helicobacter and although my stomach issues feel as if they have improved, I am still very fatigued and have difficulty in concentrating or getting motivated.
My question is, could I be B12 deficient without having full blown pernicious anaemia (or, just having the antibody)? If so, how do I approach my doctor for treatment?
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Mccartp
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The name pernicious anaemia is a misnomer. The symptoms are not caused by anaemia. they are caused by a deficiency in B12 which in the case of PA is the result of an autoimmune absorption problem.
The symptoms of a B12 deficiency include anaemia (generally some form of macrocytosis) but a) this will be masked if you have good folate levels and b) it isn't always the first sign to appear.
I had over 40 years of depression and anxiety and 25 years of neurological problems - carpal and tarsal tunnel - before I was told that I had a B12 deficiency. The depression and anxiety has totally gone since I started getting the levels of B12 that I actually need. I have never had anaemia.
Do you know which anti-body you showed up - PCA or IFA. There are problems with both tests - PCA can give false positives and both are at best50 % accurate.
The serum B12 test is also problematic and significant numbers of people can be significant clinical presentation with levels well into the so-called 'normal' range.
This alert may help in getting this over to your GP
Under normal circumstances the body is very efficient at recycling B12 - stores it in the liver and then releases it in bile into the ileum for reabsorption - but if you have an absorption problem - then this mechanism will be broken and the B12 you have stored will gradually leak away through the gut ... and you won't be able to build up any future stores so just a question of time until you become B12 deficient.
B12 deficiency is a serious condition - particularly in relation to its effect on the nervous system so it is better to start treating it earlier rather than waiting for it to develop if it is obvious that it is going to develop - which would seem to be the case for you.
Unfortunately GPs have a tendency only to respond to figures in test results. May be sharing some of the above with your GP will help. I can only hope it does.
Wow, thanks for the info. I will take some time and read through it properly bit pretty sure I am suffering from b12 deficiency as I do have quite a few of the symptoms - with the fatigue and fog being the worst.
When my blood was tested for a variety of things, the doc said I had the PA antibody and that was it. She told me not to worry as I wasn't anaemic and just to get tested every 2 years and then ushered me out the door with my helicobacter prescription.
I definitely feel I need to go back and have now made another appointment and will go armed with some of this information. I have also had vitiligo for 10 years so know that I am predisposed to other auto immune diseases.
Both my husband and I am sick of me sleeping 12 hours a day and still complaining of being tired. Hopefully I can get some help soon and be on the way back to normality.
These make it clear that a person who is symptomatic for B12 deficiency should be treated even if B12 levels are normal range to prevent neurological damage.
I have read that vitiligo can be associated with B12 deficiency.
Recommended UK treatment
Details can be found in BNF (British National Formulary) Chapter 9 section 1.2 , also in BCSH Cobalamin and Folate Guidelines. I found page 29 in BCSH Cobalamin Guidelines useful. Link below contains info similar to BNF in Management section.
Thanks for this info. I am UK based. I have been feeling off for months and when the anti body test came back positive, it made me explore a bit more which is when I found the pernicious anaemia society pages. I was thrown off though because the doctor said I wasn't anaemic but looking at some of this info, it seems that I don't need to be anaemic to be b12 deficient. I have joined the society and have booked an appt to go back and see doc with this info but the next appt I can get is 27th April. I will be calling every day though and seeing if I can get an appt sooner as the more I read, the more I am convinced I am b12 deficient.
I have downloaded Martyn's book tonight too so going to start on that tonight.
Thank you for your help and for sharing the above info with me.
If you can, it is a good idea to request copies of your test results. Make sure they include the reference ranges. You might be asked to pay a fee to get them, but you are legally entitled to them. Sometimes results are hard to interpret and even good doctors can miss things sometimes. Having a look at them yourself is a good idea.
I have never suffered officially from anaemia although my ferritin levels have been at the lower end of normal in the past. I've only ever had ferritin tests and there are other tests to check iron levels.
I have been highly symptomatic for B12 deficiency for many years but antibody tests came back negative on more than one occasion. Martyn Hooper, the chair of the PAS tested negative on the IFA (Intrinsic Factor Antibody) test more than once before testing positive. My personal opinion is that none of the tests that might indicate B12 deficiency/PA are foolproof. See following link for details of other tests.
Are you already supplementing with B12? Supplementing can affect results of some of the tests. I chose to self treat after years of trying to get NHS treatment and it has made it virtually impossible to get a diagnosis.
I think there is info about B12 tests in both books I recommended in above post. There is info about various B12 tests in "BCSH Cobalamin and Folate guidelines" on pages 4 to 8.
"My question is, could I be B12 deficient without having full blown pernicious anaemia"
There are many causes of B12 deficiency. See following link.
Have you ever been tested for Coeliac disease? Coeliac disease can affect the gut and therefore can lead to B12 deficiency. It is possible to still have Coeliac disease even if Coeliac antibody test comes back negative.
There are quite a few on this forum who have both thyroid problems and B12 deficiency. The symptoms overlap and I have read that it is not unknown for a person with one auto-immune disease to develop another.
Martyn has written two other books as well. "Living with Pernicious Anaemia and Vitamin B12 Deficiency" has several case histories...made me cry with recognition. "Could It Be b12" has a lot of case histories as well.
Do you have other blood relatives with B12 deficiency/PA/auto-immune problems? The GP may be interested. I have read that there is a genetic component to some causes of B12 deficiency. PA can run in families.
I have been tested for coeliac about 8 years ago and was negative. I have had IBS for over 20 years but don't think I am coeliac.
I am not aware of any other family members having any auto immune disorder. My mum was on thyroxine for years but I think it was something to do with her bipolar disorder and the medication for that.
Just started to read Martin's book and think I am going to find it a really interesting read.
Will post back with my blood results when I get access to them as I have no idea if I was even tested for b12 deficiency - the main reason my bloods were being tested was due to a huge increase in gamma gt levels but they tested for lots of things and the PA antibody showed up.
Yes, get all your blood tests and post the results here. Check if you even had your B12 checked! Neurological symptoms need treated soon. Anaemia is not apparent in 30% of people. Make sure you read the guidelines and go back with a supportive relative/friend. Good luck!
There are other tests a GP can do if a person tests negative for Coeliac antibodies but Coeliac type symptoms continue. My experience is that these other tests are not always done,. Have you ever been tested for IgA deficiency?
A person with Coeliac disease who is IgA deficient will not produce the normal Coeliac antibodies.
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