I'm new here, just looking for any insight on my situation to try and figure out the cause of my b12 deficiency...
For a little background:
I'm 32, female. I first became aware of low b12 levels in mid 2020. I'd had 3 highly stressful years and was left feeling awful with anxiety, ear fullness, clicking/cracking & autophony, jaw tension, vertigo, lack of concentration, flares of rosacea skin flushing. I'd seen my GP a few times but never got anywhere, nor was sent for bloods so decided to go private. Test results showed total b12 at 246 pmol and Vit D at 13 nmol. I started supplementing both and late 2020 moved to France where I picked up with a new doctor here.
My first test showed abnormal results for my full blood count (borderline anaemic), and b12 at 108 pmol, so the doctor prescribed 1000mg oral supplement (add to water) for 3 months. I took this then tested again and results showed similar FBC results, and b12 at 107 pmol. I also had an intrinsic factor antibody test which showed negative.
I saw the doctor today to discuss the results, and she seems stumped as to why my b12 is unchanged after the course of treatment, if the intrinsic factor is negative. She's given me the same oral supplement for another 3 months, and is also suggesting a potential reason could be because I don't eat a lot of meat (I'm not vegetarian, I eat meat/fish approx once a week, cheese and dairy etc daily) and asked if I could up it. I already have a healthy balanced diet, I can eat another portion of chicken a week... but I'm just kind of confused because the oral supplement had no impact.
Re symptoms: I still have most of the physical symptoms listed above (anxiety has subsided thankfully), and some neurological symptoms – leg muscles firing like electric shocks.
Is there anything else I should be considering as to the cause of this b12 deficiency? A reason why the oral supplement didn't have any impact? Anything else I should be asking the doctor to test for?
Thank you so much for any insight it's so appreciated
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Purpleturtle21
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Welcome, I'm afraid our 'experts' go to bed early. I seem to be the only one around after 9pm.' I'm sure you will plenty of answers and advice tomorrow.
A negative intrinsic factor antibody test doesn't exclude pernicious anemia because false negatives are common. 1 mg orally is a maintenance dose. Usually a stronger dose is recommended to raise levels, because you only absorb roughly 1 % of a 1 mg oral dose. So it's not surprising at all that your levels haven't changed.
The doctor should know about how very common false negative tests are for IF antibodies. The test only picks up around 50 % of cases. Besides, there are other forms of absorbtion problems, gluten intolerance or IBS for example.
Six months of b12 deficiency can cause permanent nerve problems, so it is important to treat quickly. A other 3 months on only 1 mg oral doesn't sound like a good idea. Too risky.
I’m afraid that a 1mg oral maintenance dose does not work for all Pernicious Anaemia patients . I really doubt that many can get the 1% by way of the ileum . I know that I can’t . I tried so very hard in my desperation before I found this forum , and found out how to get everything for self-injection of B12 . Saved me , but still left with an irreversible symptom .
The most likely cause of your low B12 is PA - as palmier says - the test isn't very sensitive - it gives false negatives around 50% of the time (varies between 40% and 60% depending on the exact test method. This means that negative IFAB does not rule out PA as the cause of a B12 absorption problem. The BCSH guidelines on cobalamin and folate deficiency refer to IFAB negative PA because the test is so problematic and the treatment is the same as forHigh dose oral is never going to be an efficient way of raising B12 levels in someone with an absorption problem because so little of the dose is actually absorbed - though it can be an effective way of maintaining B12 levels but it doesn't work for everyone even then and the reasons why aren't understood at the moment.
If you have neurological symptoms you really need some loading doses (injections) and this would be the case even if the reason was dietary.
Suggest you share the BCSH guidelines with your GP
Some cases of PA will respond to oral B12, but by no means all will.
IFAb negative just means it's harder to diagnose!
The test only finds half of the cases of PA and there's no reason to assume that if you don't have demonstrable IFAb then you ought to be able to absorb B12, because it certainly looks like you can't.
A course of injections would likely raise your levels. Keep up the good diet, and find a way of getting some B12 into your system! Self injection is a popular choice, and isn't too difficult either. Don't give up.
As palmier explained the intrinsic factors Antibody test cannot be relied upon to reveal P.A. A Scientist ( Flipper , I believe ) who has knowledge of the IFAB test, explained it was NOT a test for P.A. , but a test for the Intrinsic Factor Antibodies . These antibodies can appear and disappear from the blood of P.A. patients . I believe our Chairman, Martyn Hooper didn’t test positive until the 3rd test !
There are many causes for B12 deficiency.
Many medications can cause it Some diabetic medications ,.All PPIs and stomach-acid reducing preparations. Google for all of them .
Certain Stomach operations
Abuse of Nitrous Oxide ( laughing gas)
The fish tape worm that lives on after insufficient smoking or eating raw fish It devours your B12 ( not the same as a meat tapeworm)
Diet of course , but that’s not the reason for your deficiency by the sounds of it .
Helicobacter pylori infection caught by person to person contact , or contaminated food or water . This is the bacteria that can cause stomach ulcers .
BUT THE MOST COMMON CAUSE OF B12 DEFICIENCY IS…….. PERNICIOUS ANAEMIA !
I’m sure to have forgotten some causes of B12 deficiency !
The trouble is Purpleturtle21 , that even if you do manage to get a diagnosis of Pernicious Anaemia, through a positive Intrinsic Factor Antibody test , you may not get effective treatment . I can tell you this from personal experience . I had low , a well below range , B12 blood serum result , with many symptoms of B12 deficiency , including totally numb feet . I was told that everything was normal . I had to see a private doctor to get the IFAB test . Then my GP was obliged to give me B12 injections(5 over 2weeks ) My symptoms returned in less than 2 weeks , but my GP would only allow me 1 injection every 3 months - , My numb feet were pronounced “idiopathic” I was desperate, but luckily after a few months , I found the P.A.S and this forum . So now I self inject once every week , to keep symptoms at bay , but my foot problem is irreversible . . My GP told me that I was very foolish to self -inject because B12 is “Toxic “There is huge ignorance in the medical profession about Pernicious Anaemia/ B12 deficiency as we all know that is nonsense .
“ .One size fits all “ treatment for P.A. is outrageous . But that is how the situation is in the U.K. So should you manage to get a diagnosis for P.A. your difficulties may not end . . But luckily you have come to the right place here . There is always help available. Best wishes .
There is a helpline number that PAS members can ring.
deniseinmilden started a thread recently "Causes of B12 Deficiency Besides Pernicious Anaemia and Poor Diet" which you might find helpful.
Links to forum threads where I left detailed replies with lots of B12 deficiency info on causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment in UK.
PAS (Pernicious Anaemia Society) has some members in countries outside UK.
I don't know if they have many European members but you could contact them if interested. You do not have to have a confirmed PA diagnosis to join PAS. It takes some members many years to get a diagnosis.
It's my impression from reading many posts that lots of people on this forum have met health professionals who lack understanding of B12 deficiency.
I suggest you prepare yourself in case you meet a health professional who lacks understanding and that you try to find information/evidence that can help you argue against some of the common misconceptions that they may have.
B12 article from Mayo Clinic in US (aimed at health professionals and researchers)
May be worth looking to see if the French Society of Haematology has published any guidelines on diagnosis/treatment for B12 deficiency and Pernicious Anaemia.
If you're a UK national who may return to UK at some point then I would encourage you to keep an eye on what's happening in UK with regards to treatment/diagnosis.
As well as new NICE guidelines on PA/B12 deficiency being published next year (2023) there are moves in UK to move more people from B12 injections to high dose oral B12.
In UK, this is often promoted as easier for patients but I suspect that the main reason is cost saving. I don't know if there are similar moves in parts of Europe.
Although some forum members manage on high dose oral B12, there are forum members, including myself, who can't manage on high dose oral.
Support
Next link mentions some sources of support for those with B12 deficiency in Europe.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
UK treatment info in this book is out of date. See BNF hydroxocobalamin link in this reply for up to date info on UK B12 deficiency treatment.
"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".
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
I'm in the same situation. I had seven years if extreme stressfully life and at the same time I was very active physically. I was diagnosed with b12 deficiency in 2014 but my deficiency probably was started 2011 since I had moderate stressfully life and heavy work. My stressfully life actually has long time ago started. Anyways my symptoms developed gradually until I experienced megaloblastic aneamia but due to before test injection and low ferritin everything showed in normal range but homocysteine and MMA or IFab or Holo transcobalamin was never ordered by my GP and no D3 was also tested. Try to do all of your tests first and don't rely on pills inly. Take slow release methylcobalamine in high dose like 15000 mcg and start self injection as soon as possible, you can buy liquid form of methylcobalamine and add it to water and drink it whole day. Remember steady absorption of B12 is required to improve symptoms and just injection can't do that and these pills can raise your tolerance. Don't let your symptoms develop. Raise your feritin to over 40 Ng/ml and optimum range is 40 to 70 but over 80 bear health risks. Take iron pills in and off but keep it in range. Take good b complex. Low B6 with methyl folate instead of folic acid. Iron B12 and b9 in it's active form work together but iron and b9 should be taken in lowest amount. There is no overdose for B12. Both hydroxocobalamin and methylcobalamine works well but cyanocobalamin may not work for everyone. Take D3 k2 and Omega 3 too. Check everything, thyroid, parathyroid, magnesium,...At the beginning you need to take more potassium foods like banana to prevent hypokalemia.
Exactly it happened to probably I had h pylori infection and at the same time too much stress and physical activity. Bad combination of things depletes b12.
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