I am new to this community and have found some useful information here. I was diagnosed with B12 deficiency of 158 last August, had various tests plus B12 repeated on 17 January and this time my B12 came back at 147. My GP says it’s borderline but from what I’ve read hear it’s low, he did further bloods on Intrinsic factor and Autoimmune Liver panel. Still waiting result on IF but the Autoimmune has come back as UNKNOWN and STATUS Awaiting acceptance of Pathology team. I was wondering if anyone here could tell me what this means. I’ve had very bad symptoms for a couple of years and it was only when I saw a different doctor who tested my B12 that things came to light.
I have very bad arthritis and my mum had Rheumatoid Arthritis so I thought maybe that I have it but bloods say no! have been so tired over last six months, terrible muscle pain, foggy head, not good balance, tinnitus and pins and needles in hand and feet to name but a few symptoms.
I would be so very grateful if anyone could enlightenment me.
Many thanks.
Written by
Frenchbetty
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Sounds to me like Pernicious Anaemia . You already have one Autoimmune condition, namely Rheumatoid Arthritis . Autoimmune conditions seldom come alone .
After autoimmune thyroid conditions , Rheumatoid Arthritis is the most common autoimmune “companion” “ condition that can accompany Pernicious Anaemia. But there are over 100 autoimmune conditions!
Your symptoms and B-12 blood results point to B12 deficiency, requiring immediate treatment.
Please bear in mind that the Intrinsic Factor Antibodies test is unreliable and about 50 % of PA patients test negative . Your doctor shoujd know this fact .
Your B12 blood result is really LOW , given that up to about 80% of the measurement can be inactive B12 , from which your body cannot benefit
Your doctor needs to be much better educated on this subject.
You need 6 loading doses of B12 asap then a B12 injection as often as required to keep your symptoms at bay .( required regularity varies from patient to patient ) Most of is on this forum have to self inject B12 to keep well . Tablets do not work for PA patients .
I am assuming that you do eat foods that contain B12 either meat fish, eggs and dairy products .
That you are not taking medicine that will deprive you of B12. E.g Metformin, Proton Pump Inhibitors, and other medications ( look them up)
That you do not have Helicobacter Pylori infection
That you have not had operations that eliminate parietal cells in your stomach ,
That you do not have fish tape worm infestation . ( fish tapeworm feed on your B12 which causes B12 deficiency)
PN can be associated with B12 deficiency and folate deficiency.
My understanding is that in UK if you're symptomatic for B12 deficiency you should be treated even if serum B12 is within normal range. See blog post below.
I suggest you search online for this UK health document "NICE CKS Anaemia - B12 and Folate deficiency" and read it thoroughly including the Background Information section. It has info on treatment, when to refer to a specialist and other useful things.
Try to find the local b12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland and compare them with NICE CKS document I mentioned above.
Try searching forum posts here and if this doesn't work, try submitting a FOI (Freedom of Information) request to the ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Some of these local B12 deficiency guidelines in UK are not as helpful as they should be. See blog post below.
Link above has letter templates. Point 1 in above link is about under treatment of B12 deficiency with neurological symptoms.
It's vital to get adequate treatment. Delayed or inadequate treatment for B12 deficiency increases the risk of developing permanent neurological problems. In severe cases, the spinal cord may be affected.
PAS article about SACD, sub acute combined degeneration of the spinal cord
Some UK forum members turn to self treatment if NHS treatment is not enough. Some get extra B12 injections from a private GP or beauty salon (expensive), some try high dose oral B12 (1000mcg or higher) but this doesn't work for some people and some as a last resort turn to self injection (SI). There is a pinned post about SI.
Two useful B12 books
Published a few years ago so some bits may need updating.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Wrong ideas about B12 deficiency
Many here have met health professionals with a poor understanding of B12 deficiency.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
Hi, thank you so much for your response to my questions. It make sense now, I have to be patient. My GP did say these tests can take longer than usual, I’m coming up to two weeks tomorrow so hope it won’t be long.
I am sorry to read of your symptoms. Your Autoimmune Liver panel are not the bog standard of :-
Urea and Electrolytes (Kidney) known as U & E’s.
Liver Function Test known as LFTs.
Thyroid
Full Blood Count known as FBC.
They are more specialised so take longer. I do know laboratories do get swamped with tests and some times, the good old machines break down. It can be infuriating for staff working in the labs because they then work like the clappers dealing with the backlogs.
Just make sure you get your results and a Follow Up appointment with GP.
It's time to start getting B12 injections every other day until your symptoms have cleared up. Do not delay since delaying can result in permanent damage. I hope you feel better soon!
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1
Among many other things, this article explains that B12 deficiency has no gold-standard tests, which is to say that test results can be helpful in the diagnostic process, but test results are not definitive. A good example is the serum B12 test you refer to. People whose results are within the reference range can be deficient in B12, and people whose results are below the reference range can be free of neurological symptoms typical of B12 deficiency (though the the patient should be carefully followed to make sure that symptoms do not appear). Therefore, B12 deficiency is a clinical diagnosis, based primarily on symptoms, especially neurological symptoms such as the many symptoms you have. The article explains that if doctors see symptoms typical of B12 deficiency, and there is no alternative diagnosis that explains the symptoms, then the doctor should prescribe a trial prescription of B12 injections (NOT oral B12), every other day for at least 3 months. If symptoms improve, the improved symptoms indicate that the correct diagnosis is in fact B12 deficiency.
Do you know the units of measurement for your B12 levels? As in, my B12 was 114 pg/mL, which translates to 84.11 pmol/L.
If your B12 is at 147 pg/mL, that is dangerously low — above 200 pg/mL (148 pmol/L) is required for essential functioning (creating healthy cells, etc), and above 400 pg/mL (295.2 pmol/L) is generally where most folks stop having symptoms.
Your doctor saying that you're borderline is them just reading what the computer is telling them — that you're "borderline" dangerous levels — without taking your other symptoms into account. Your B12 needs to be higher.
You cannot overdose on B12, because your body will just excrete the excess in your urine, so start taking supplements at home. Note: although you cannot overdose, you can have too much b12 where it gets over 1000 and you start having trouble sleeping.
If your doctor is testing for intrinsic factor antibodies, make sure they are also testing for parietal cell antibodies. The test for IFa is only positive in 50% of all cases where IFa are present. But the test for PCa is positive in 90% of all cases where PCa are present — and parietal cell antibodies are the precursor to intrinsic factor antibodies. The body starts attacking parietal cells first, then after awhile it starts attacking intrinsic factor.
Many doctors are under-informed about B12-related issues and autoimmune diseases, because new information and new science on autoimmunity is coming out all the time. Make sure you get informed (with the science, not just here in forums), so that you can advocate for your care. It took my doctors 8 years to figure out that my chronic stomach issues and memory loss and fatigue were due to malnutrition caused by autoimmune disease. My memory issues are now permanent.
Don't let your doctors drag their feet on figuring out what is causing your fatigue and getting you treatment. You deserve meaningful, quality care, but sometimes you have to be the one to make sure you get it. Good luck to you.
Thanks so much for your reply, I’m very grateful. At last, this morning (3weeks) my antibody bloods are back…Gastric parietal cell antibodies (associated with gastritis) has come back POSITIVE.
Intrinsic Value is NORMAL.
As I have B12 of 147 does it now mean together with positive GPCA that I should be offered B12 injections?
I want to arm myself with as much info before my GP appointment next week. I just want to feel better!!
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