Back in 2012 his B12 was 177 and the GP did nothing! I gave him Jarrow formulas methyl B12. 5000Micrograms daily. Then when his B12 reached 600 I kept him on a maintenance dose of 1000 daily. About 10 months ago when our life got extremely busy he stopped taking the B12 and his B12 has come right down to 187.
The Dr has asked for another blood test in 2 weeks time and then to see her as there is a very high Eosinophil count also been high for 4 years!
His symptoms include tiredness, problems with memory, understanding and judgement. Also mood swings and anger.
My question is What other tests should we be asking for in order to establish pernicious anaemia or not!
Would be much obliged if any one could help. Thank you in advance.
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hymermad
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I am not a medically qualified person and there are others on this forum who will be able to give advice on that score but unless your partner has undergone gastric surgery his low b12 and his symptoms suggest other reasons need to be looked at.
Is he vegan or vegetarian as b12 in food can only be sourced from meat, fish and poultry including eggs accompanied by green vegetables high in folate e.g. spinach.
Is he on medication such as Metformin for diabetes or does he take antacids both of which are known to suppress the intake of b12 through the stomach.
If none of the above applies - he has a meat & Vegetable rich diet, is not diabetic and a normal digestion then you could suggest to his doctor to do an intrinsic factor antibody (IF antibody) test which may be used to help determine the cause of a vitamin B12 deficiency and to confirm a diagnosis of pernicious anemia. (P.A.)
If P.A. is confirmed your partner will need to have b12 injections for the rest of his life.
When I was first diagnosed I was given the option of eating raw liver three times a day or having the b12 injections and much as I love cooked liver, bacon, onions and gravy I chose the jabs. That was nearly 45 years ago and I'm still "clivealive" coming up to 75.
The following general symptoms are common in those with PA and your partner appears to manifest some of them but try and get the IF antibody test done for confirmation:
The Strange Tiredness
Fog days, where you have difficulty in thinking clearly
All the above is correct, however it's worth pointing out that the intrinsic factor test can be a false negative and is only correct in 40% of tests. If he has Pernicious Anaemia which means he won't be a able to absorb B12 naturally then oral supplements won't treat the issue of low B12 but will increase his serum level. It's always best to have no oral supplements for 2 months before a blood test. There is an active B12 test available which some hospitals do offer but you'll need a referral letter from your GP and this test will confirm PA. Then he'll need injections for life.
What were his Mcv & mch levels on his last blood test as high levels can indicate an autoimmune disease but unfortunately GP's do not recognised this.
He'll probably need folic acid/folate & an iron supplements as well to bring his levels up as they all work in unison. When going back to your GP it may be worth printing off various documents to take with you as in my experience, most GP's are unaware of all of the issue's and don't tend to treat the patients symptoms but the levels on the blood test.
I was one of the lucky ones and got diagnosed with PA 20 years ago by a great GPark and believe you me they are very few and far between when it comes to this disease. Good luck!
SO true!! I suffered a long time, but finally got a correct diagnosis. My local GP didn't know what test to ask for! I found a specialist who knew exactly what to do.
Many thanks for your reply. Yes he has many symptoms and because of his stupidity!...... Cognitive decline he stepped off the camper step knowing he shouldn't and broke his ankle badly needing a 2 her op and so far 3 nights in hospital . I have hypothyroid and while I was being kept ill by the NHS! I studied my condition and joined forums etc and also cos I was low in B12 and ironed it islinked I recognise the symptoms. I also am sure he is hypo too but cos the dr won't test FT4 and FT3 we will have to do private tests!
Because he is having more blood tests on be 24 th I am going to write to GP requesting further tests for my partner.
She is accustomed to me doing this over my own condition!! And no he is not vegan or vegetarian so something else is going on.
I agree with Clive's reply and would just like to add that here in Australia I was also given an antibody test for Gastric Parietal Cell as well as the Intrinsic factor. I was + for the GPC but negative for the IF so it was quite helpful in the diagnosis. Good luck, you are on the right track!
Here in the UK the recommendations say that an anti-GPC antibody test should not be carried out for PA, because there are other things that could be responsible. Instead the anti-IF antibody test is recommended.
The big problem with those recommendations is that many doctors seem to think that a negative result for anti-IF means a negative result for PA. This can induce them to stop necessary treatment.
I think they should carry out at least three tests - serum B12, anti-IF and anti-GPC - and diagnose PA if two out of three are positive.
Interesting, isn't it? Is the GPC test available on your Public Health scheme?
I scored two out of the three which happily found the disease. I was just lucky to have found an efficient doctor. That said, she is still not entirely happy about my fortnightly self injection and is sending me off for an MRI in case something else is in play.
I'm pretty certain all I need is B12 but will co-operate to ensure there is nothing else lurking.
Yes, the anti-GPC test is available on the NHS - because that's what my GP decided I should have. He is also happy with (well, resigned to) my self-injecting weekly. He prescribes enough for fortnightly jabs and I supply the rest.
You are lucky to have an informed GP. I think my GP will eventually settle to my regular treatment once she has exhausted her brain for alternative causes. Might take her a while but she tells me I am her fifth PA discovery so she is on to it. Hopefully, she can conduct her own little comparative study and will eventually come around.
The best possible test your doctor can carry out is to prescribe a course of B12 injections immediately. It's the best way of telling if his symptoms are due to a B12 deficiency or something else. If it is B12 he'll improve, if it's something else he won't.
At the same time the doctor can start investigating possible causes. But any delay in treatment of B12 deficiency is not a good idea - it can lead to severe neurological problems.
To me it seems as if he needs to get on a course of jabs. I would download the latest BCSH guidelines to take into your next appointment and insist on them. Take in the PA Society checklist of symptoms with those marked off that your partner suffers from. All this backed up with a letter outlining why you feel your partner should trial jabs. I find that putting things in writing makes them take you seriously. It has to go on your medical record so there is no wriggling out of what was talked about. I got all my medical records printed out and I was alarmed by what poor information was on there. I am not even sure they have put on the record that I have PA (despite a positive IFA result). Iron levels and folate should be in the higher end of range if you have PA I have been told so keep supplementing too.
I have read that B12 deficiency can sometimes occur in those with a fish tapeworm infection, I've also read that high levels of eosinophils can be a sign of fish tapeworm infection but can also be found in some other conditions.
See links below for info on fish tapeworm infection.
Has he ever had an IFA (Intrinsic factor antibody) test. This can help to diagnose PA but is not partiuclarly reliable. people can still have PA even with a negative iFa test.
Has he ever had a test for Coeliac disease? Coeliac disease affects the gut and can lead to difficulties absorbing some nutrients. Some people with a negative Coeliac test result may still have Coeliac disease.
I am not a medic, just a patient who has struggled to get a diagnosis.
"I got all my medical records printed out "
I think NovicePA was very sensible to do this. I learnt from experience that what I was told was "normal" was not always normal when I got a printed copy of results. I always get copies of my blood test results now.
Many many thanks for all the links. Yes I always get blood test results printed out as I have had a long journey with trying to educate my GP with my hypothyroidism! I am a heart sink patient as I always ask questions provide them with information!
Once again many thanks for your reply and all the info and links.
Antibodies to Intrinsic Factor. Also I would ask them to take biopsies of his stomach to determine damage if any and extent of damage. He may have either maldigestion, (gastritis) or malabsorption (small intestine) issues. Start there...
He must feel very poorly... So sorry. I'll say a prayer for him!
Assuming you are in the UK then I'd push for treatment in line with BCSH and also draw your GPs attention to this alert in relation to dealing with a B12 deficiency on the basis of just test scores
There is NO definitive test for B12 deficiency. Tests for identifying the cause of a B12 deficiency as PA are also poor and, in my personal opinion, there is an element of red herring.
in some parts of the world fish tape-worm infestation is a relatively common cause of a B12 deficiency - eg scandanavian countries - where specific dietary practices lead to a higher risk of infestation. It is probably the one absorption problem that could be reversed but others can't be reversed - which is why the treatment ends up being the same.
The inaccuracies inherrent in the tests for PA mean that tests are often inconclusive.
PA tends to run in families so has genetic implications but as far as I am aware the actual genes concerned have not yet been specifically identified ... or we would probably using those as a way of defining existence of the condition.
Tests that can help to clarify if B12 is low in the absence of inconclusive (grey area) results are MMA and homocysteine - which look at levels of harmful waste products that build up if B12 is low ... but other things can also cause elevated levels, including low levels of folate. MMA is available on NHS. homocysteine is more expensive and generally not available on the NHS.
HOWEVER, as above the limitations of the B12 serum test (which reflect the huge amount of personal variation in the way we process and react to B12 that no machine can adjust for) means that in cases of uncertainty clinical symptoms are the correct way to go - as reflected in the BCSH guidelines.
Not really in a position to on the other factors beyond, as I think others have said - that folate is low which would affect ability to process B12.
If there isn't a lack of folate in your partners diet then it is possible that he may have a genetic problem processing folate in his food and converting it to the forms that are needed by the cells in order for them to do what they need. However, this tends to show up in blood results as higher folate rather than lower folate.
When I was diagnosed with b12 diffiency my doctor also did an anti body test which revealed my intrincic factor cells had been destroyed so my body could no longer absorb b12 on its own . So maybe have an anti body test. Hope this helps
Thank you everyone who took time out to help me . I will let you know what transpires in due course.
Hi ,
Has your partners high Eosinophil count been investigated? It can be associated with EGPA a rare form of Vasculitis. Does your partner have asthma or sinus problems? Have they ever had their inflamatory markets checked?
The problem is that low B12 shares a lot of signs and symptoms with other diseases and can be a feature of autoimmune disease in general.
No he hasn't got asthma or sinus problems. His eosinophil has been over the range for 4 yrs but now considerable higher. He has iching and spots on stomach forearms and legs but the GP not bothered! I do suspect he has under active thyroid but because TSH is in range they don't test FT4 and FT3 !
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