I've now had a second intrinsic factor antibody test (privately). Both my private tests came out positive for IF, but the middle test I took, which was with the NHS, came out negative. The GP though thinks I have chronic fatigue syndrome as my cells are normal size and B12 blood levels are coming across as within the normal range. I have all the symptoms though and according to a DNA test I carry 3 gene variants that are linked with poor processing of B12.
Not sure what my next step is 🤨
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JSD100
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There aren't any gene variants that will have a significant effect on B12 processing.
Let me guess, these variants are: MTHFR, C677T or A1298T plus one of the several SNPs in the MTR and/or MTRR genes. Ignore it.
What you need to do is persuade the doctor to give you the gold standard test for a B12 deficiency - put you on a course of injections. If you get better then you stay on the injections for the rest of your life. If you do not then the doc can continue to pursue the CFS cop-out.
Your GP should know that you not have to have enlarged red blood cells to be B12 deficient / have P.A. . Also your serum blood B12 can show normal . Yes , and those intrinsic Factor antibody tests cannot be relied upon if you test negative . About 50% of Pernicious Anaemia patients test negative . One positive test confirms P.A. and you have had 2 positive tests . Your GP should acknowledge that . Those antibodies do not always show up in P.A.patients . If you have some of the symptoms , then, as fbirder says , a course of B12 injections which alleviated them , would indicate P.A. , even without those positive IFAB results . Injections are really cheap ,so they do not cost the NHS a lot .
It is really more than frustrating that the medical profession is so ignorant about B12 deficiency /P.A. We have to help ourselves . It’s a real battle . Best of luck to you .
I’ve got Chronic Fatigue Syndrome. I found a year ago that B12 injections too away 80% of the symptoms. I’ve been left with some fatigue. I found my GPs utterly useless. They refused to believe that B12 did anything, told me I was wrong and it was a placebo effect, said I needed to accept CFS and that only thing they could offer me was I should stay positive as that might make me better. I’ve been down a few dead ends with private drs and endocrinologists but no autoimmune issues could be proven. I’m now working with a functional nutritionist. It’s still early days but she’s been the first person who has actually tested how my body’s energy system is, my gut, and is giving me treatment for all of those. I’m also gluten free which could have helped get rid of the joint pain I was having. Good luck, but there are other avenues to GP. Sadly expensive, I’m in debt paying for it but feel it’s worth it if it works as I can’t work full time at moment due to fatigue.
"I've now had a second intrinsic factor antibody test (privately). Both my private tests came out positive for IF, but the middle test I took, which was with the NHS, came out negative"
GPs can have a lot of misunderstandings/misconceptions abut B12 deficiency so you may need to arm yourself with lots of B12 info to fight the ignorance.
Do you have any neuro symptoms? If yes, see section in above link for those with "neurological involvement".
From comments on this forum, I feel that too many UK GPs seem unaware that there is a different pattern of treatment for those with B12 deficiency with neuro symptoms.
If neuro symptoms are present, have you been referred to a neurologist?
You could draw GPs attention to the increased risk of permanent neurological damage including damage to spinal cord if B12 deficiency is untreated or under treated.
I included a lot of information in a recent thread "Why are my injections being refused" which might be worth looking at. It's about 4 or 5 threads above this thread.
I've written some very detailed replies with more B12 info eg B12 articles, B12 websites, B12 books and some hints on dealing with unhelpful GPs in threads below.
I had genetic testing by consultants from Adult Inherited Metabolic Diseases because of raised methylmalonic acid (MMA) levels despite B12 injections - the report mentioned these recurrent MTHFR gene variants as NOT being analysed due to high allele frequency: c.677C>T and 1298A>C (both of which have been renumbered). I think these are the ones that fbirder has mentioned. 23 other variants were tested however -and nothing of significance was found that might explain the reason for raised MMA. I waited two years for the results. They apologised for not being able to find anything and were very kind.
It took three years from first being tested for my MMA level to fall to within range. And a lot of B12.
If you have had 2 IFAB tests returned as positive, that should make any medical professional suspect that your chronic fatigue is most likely due to pernicious anaemia. After all, any "syndrome" is just a set of symptoms - and that is not yet a diagnosis. Just as irritable bowel syndrome (IBS) has a reason - some believe small intestine bacterial overgrowth (SIBO) to be that reason. SIBO bacteria can rob you of vitamins including B12.
Lack of research is leaving people high and dry.
I'd keep going, but ignore the variants -if they are those above ! Perhaps find out what your MMA is doing ? If B12 is replete, it should be within normal range- so usually too late by the time loading injections completed... unless there is a functional B12 problem, a renal problem or a SIBO problem.
You say B12 is within "normal" range: have you got a figure and a unit of measurement ? Ranges vary quite a lot around the country, so a range could help too.
You also say you have "all the symptoms": it might help to expand a little.
There are so many possible symptoms, since B12 is required for everything : hair, eyesight, brain function, balance, hearing, tongue, skin, muscles, nerves, bones, fingernails etc etc.
Symptoms that to us would scream B12 deficiency at anyone, taken individually might suggest a number of complaints or conditions - and, once sent to consultants, they are taken individually. The other problem is that many of the symptoms are not recognised because of poor medical training on vitamin deficiency. Then of course, we are all different.
So I would keep a symptoms list, and make a daily chart so that, when you do get B12 treatment, you can see what symptoms are reduced in frequency or severity, what disappear over time, what remain and leave a couple of spare columns- for symptoms that you didn't even realise were B12-related but that improve or go once you get the injections !
Once the injections are added into the chart, you should hopefully begin to see a pattern which will determine your frequency requirements for best chances of a symptom-free life. Which is your aim and should also be that of your GP.
A difficult situation for you - and to a lesser extent for your GP perhaps. Lack of education on vitamins can only be an excuse for so long, though. The two positive anti-Intrinsic Factor antibody test results should be all the evidence needed for a pernicious anaemia diagnosis, or at very least, a suspicion of this. These symptoms are an indicator of something, chronic fatigue syndrome is also only an indicator of something, too.
Adding these two together should at very least warrant a trial of B12. Perhaps while waiting for a neurologist appointment, since you have unexplained pins and needles. Neurological symptoms require a different B12 treatment pathway. Take copies of your positive IFab tests (never originals) with you -for hospital file.
Your chart might also then come in handy- even if just for your understanding of what is happening.
Martyn Hooper, founder of the Pernicious Anaemia Society, had to have three IFab tests before getting a positive result. When it's positive, it's 95% right- in medical terms I think that's about as good as it gets. And you got it twice !
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