IFAB negative - should I pursue diagn... - Pernicious Anaemi...

Pernicious Anaemia Society

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IFAB negative - should I pursue diagnosis?

7 years ago•6 Replies

Hi I'm new here and was wondering if anyone had any advice on how to proceed with my GP? I'm 55 years old and for the last year or so I have been suffering from hot flashes, extreme fatigue, depression, palpitations and back pain. I had a heart attack 6 years ago so my GP investigated for heart arrythmia and when that showed up negative, investigated for sleep apnoea (negative - though consultant suggested iron for restless legs which i didn't think i had!) and an MRI for spinal stenosis (negative). My GP has been quite accommodating so far to be fair and arranged for physiotherapy for my back and I regularly do the exercises which help a little with the discomfort. As I thought the symptoms were related to perimenopause I have also begun a course of HRT.

Further blood tests (at my request) showed up a Vitamin D deficiency. Recently I've been diagnosed with autoimmune thyroid disease through a TPO antibody blood test. I persuaded GP to test for this even though TSH was 'within normal range' (though steadily increasing year on year). I have been having neurological symptoms on and off for several years now but in the last 6 months they have become more noticeable and worrying. After much research I asked GP to test B12 levels I was again told it was 'normal' at 172. Thankfully my GP agreed to therapeutic trial of B12 injections (I have had 5 loadeing shots so far) and my energy levels have increased significantly although the tingling hands and burning feet have yet to. I no longer sleep 12 hours a night and am much less lethargic and can get through a day's work fairly well. I also requested to be tested for IFAB which has come back negative and I am wondering whether I should continue to pursue this line of enquiry by asking for homocysteine and/or methylmalonic acid blood tests. I sense my GP is getting a bit fed up with my constant requests as he said to me: 'You don't have anemia' (even before the IFAB test came back). I must admit I am also getting weary of having to be so proactive.

My question is this: should I continue to ask for investigations to confirm a diagnosis?

Any advice or support would be gratefully received.

P.S. I am also already on a significant number of medications: aspirin, bisoprolol, ramipril, fluoxetine, estrogen gel, progesterone, vitamin d, iron and statins. I also use inhalers for asthma and I have an epipen for severe seafood allergy. I don't know if this is all relevant but I am sick of having to take so many pills etc.

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Zumba123

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6 Replies

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clivealiveForum Support7 years ago

Hi Zumba123 The serum B12 test only records the amount of B12 swirling around in your blood and does not reflect what is getting into the cells.

Do you know the range <From -- to> that was used in the test?

The new BCSH guidelines say: “Plasma tHcy and/or plasma MMA, depending on availability, may be considered as supplementary tests to determine biochemical cobamalin deficiency in the presence of clinical suspicion of deficiency but an indeterminate serum cobamalin level”. However as you have started treatment with B12 injections you would need to stop having them for several weeks before an MMA test.

Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

It may be that when your doctor said 'You don't have anemia'" he was thinking about "Iron Anaemia" rather than "Pernicious Anaemia" as the word in P.A. is a somewhat bad choice

It's good that you appear to be responding positively to the B12 injections and these should continue every other day until the is no further improvement in your neurological symptoms according to the N.I.C.E. guidelines. This is not saying "until they are all gone" as some may take weeks or months or even never to "go away".

Your having thyroid problems my put you at a higher risk of developing a B12 deficiency.

I am not a medically trained person so cannot comment on your medications but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well and bid you goodnight.

Zumba123• in reply toclivealive7 years ago

Thank you so much clivealive for your informative reply! The range was 150-1000ng/L.

I shall call my doctor and see if he will agree to continuing loading shots for a little while longer to see if my neurological symptoms improve.

fbirder7 years ago

I would print out this NHS document. And ask to be treated according to their protocol. hey.nhs.uk/wp/wp-content/up...

You fall on the right-hand side of the flowchart in figure 1 (serum B12 in the intermediate range plus symptoms of a B12 deficiency). Your doctor has started you one the recommended treatment (start IM B12 and test for IF antibodies).

The next stage depends on the results - If there is an objective response (symptoms start improving) or a positive IF antibody test then you get injections for life with no further testing. You appear to have an objective response to the injections, so you should get injections for life.

Energy levels tend to be early improvements after treatment. Things like Peripheral Neuropathy can take longer. Sometimes it never gets completely better.

Your peripheral neuropathy means you should get loading doses of every other day until there is no further improvement in symptoms. Then maintenance doses of once every eight weeks.

Zumba123• in reply tofbirder7 years ago

Thank you so much - very helpful.