Haven’t posted on here for a long while as I’d been feeling ok but that was short lived (lol)
Doctors ran tests and convinced me that nothing was wrong. They said last year when they did the PA test (where they test the antibodies-can’t remember what it was called) that it was negative and I didn’t have it. But that my B12 levels were 141.
My doctor thinks that I could be feeling this way because my levels have dropped again, but said this is likely diet related? I am not a vegan or vegetarian so I’m getting quite frustrated and confused.
I’ve been having bad frequent palpitations, I’m dizzy with vertigo all the time (My legs feel weird when walking) , my left arm frequently goes numb and dead and I’m always filled with panic I’m also very forgetful. The symptoms go on and on.
Is that previous level really very low, or could this just be diet/something else causing my symptoms.
Bloods are on Friday, and I’ve been referred to a cardiologist for a 3-5 day heart monitor (currently on beta blockers and still having palpitations)
Thanks in advance
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Ellesbells12
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Print this out - onlinelibrary.wiley.com/doi... - It's the guidelines for treatment of a B12 deficiency writtine by the British Commiittee on Standards in Haematology (the biggest brains in British blood).
Highlight the bit on page 500 that says
Anti-intrinsic factor antibody (anti-IFAB).
The finding of a low total serum cobalamin level may be further evaluated by testing for anti-IFAB. If positive, the test has a high positive predictive value (95%) for the presence of pernicious anaemia (Toh et al, 1997), with a concurrent low false positive rate (1–2%) i.e. a high specificity. It identifies those patients with a need for lifelong cobalamin replacement therapy. IFAB is positive in 40–60% of cases (Ungar et al, 1967), i.e., low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA).
Tell him that you eat plenty of meat and fish so it isn't dietary.
It's difficult to tell if 141 is low, or borderline (it definitely isn't high). They use two different units to measure the amount (like using cm or inches). 141 ng/L would be intermediate, on the other scale it would be 105 pmol/L which would be low.
Your result should have been quoted as something like 141 ng/L (125 - 599 ng/L) with the 'normal' range in brackets.
Thank you for that! I’ll have a read through. I have an uncle and a great uncle (who passed suddenly not too long ago sadly) they both have PA, my great grandmother also had it and my great grandfather on the other side also had it - so it is something that runs in my family. Last year when that reading was taken, the symptoms had only just started to get bad. I had my loading doses, and started on folic acid, then because of covid they stopped them, but told me that my levels were ok.
The last week I’ve been so bad. Been in tears thinking I’m having a heart attack or a stroke. I’m a nursing student, my doctors know that also, so I do feel as if they insult my intelligence sometimes.
The pain and numbness in my left arm is awful and tingly. Pains all in my upper back, constantly exhausted, I’ve just had enough of it fingers crossed for some answers soon!
Hi Ellesbells12,Sorry to hear you are poorly and about your great uncle. Fbirder knows his stuff. You can also put things in writing, a family history of PA, symptoms, how they impact your day and the ability to study to be a health professional. So, it’s added to your notes.
Link has letter templates you can base your own letters on.
Point 1 is about under treatment of B12 deficiency with neuro symptoms present.
Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.
Worth mentioning family history of PA in any letter.
As your PA test was negative, you could ask GP in any letter or conversation if it's possible that you could have Antibody Negative PA.
There is info about Antibody Negative PA in BSH Cobalamin and Folate Guidelines which you may want to pass to GP as some GPs may not be aware that it is possible to have Antibody Negative PA.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
Keep copies of any letters sent or received in case you need to make a formal complaint in future.
If you join PAS, perhaps you could print out some of them and pass them to GP?
Symptoms Diary
Might be worth keeping a daily symptoms diary that tracks changes in symptoms over time and if and when any treatment is given. Could be useful evidence of deterioration or improvement in symptoms to show GP and/or specialist.
I've written some very detailed replies with more B12 info eg more B12 articles, more B12 books and websites in threads below which might be of interest.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case you need it in the future.
One other thing, are you taking any long term antacids like Pepcid, Zantac or Prilosec. Sorry don’t know the names in the UK. If your stomach acid is suppressed that can lead to decreased B12.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
but that was short lived (lol) 
I’m also very forgetful. The symptoms go on and on. 
seeing neurologist, advice on b12 injections welcomed…
Serum ferritin too high?
About German online Pharmacies. — If they follow pharmaceutical rules rules,they are not allowed to supply U.K. with B12 ampoules! 
