Something I noticed: In my opinion, in... - Pernicious Anaemi...

Pernicious Anaemia Society

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Something I noticed

Tubbylardo profile image
3 Replies

In my opinion, in the minds of doctors, there is a big difference between being B12d and having Pernicious Anaemia. For some reason people who are B12d seem to get fobbed off by the medical staff .... but if you have PA, it is seemingly a legitimate medical condition and they can't do enough to help.

If you are B12d and haven't been tested for intrinsic factor - get it done and get a proper diagnosis for PA. It really changes the way some GP's treat you.

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Tubbylardo profile image
Tubbylardo
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wedgewood profile image
wedgewood

The test is the problem. —— About 50% of patients with undiagnosed P.A. get negative results from this test( called the Intrinsic Factor antibody test ) . It cannot find the antibodies ,then the doctor believes that they don’t have P.A. But they do . Some patients with diagnosed Pernicious Anaemia do not get enough B12 injections , as you will have read in the posts . Some are being told now that they can take oral tablets instead . . ( they cannot absorb them!) So you see the dilemma . For many , and these patients will be feeling very unwell,and really not up to arguing their case, the only solution is self-injecting, which is easy and cheap .

Cherylclaire profile image
CherylclaireForum Support

I agree.

It seems ridiculous really that there would be any difference in the way that a patient is treated personally, since the actual treatment provided is for the alleviation of B12 deficiency in either case. Whether a person has been given a reason for the cause of their B12 deficiency or not is hardly their fault !

It can take many years to get to a PA diagnosis. In a Pernicious Anaemia Society survey of almost 900 members published in 2014, 14% of them had to wait over 10 years for a PA diagnosis. I doubt the situation has improved since.

Tests are flawed or conflicting results given, symptoms can vary from patient to patient, not many of even the commonest symptoms are recognised as caused by B12 deficiency by primary care medical professionals, established injection regimes do not prove sufficient for every patient. Difficult for a GP, yes - but a life-altering nightmare for the sufferer.

Given all of the above, it might be better if, as a starting point, everyone was treated as a potential PA sufferer in terms of a willingness to understand how problematic life can/has become.

Having said that, even those with an undisputed long-standing cast-iron PA diagnosis have recently been told to go and buy their own tablets by some practices. Just shameful.

Bellabab profile image
Bellabab

The medics have become too reactive and they do not have time in 10 minutes to build a working relationship with their patients. They are so overworked that they have little time or energy left to keep on top of the latest information.

It looks to me, as somebody with a background of human biology studies and experience that B12 has many more functions that just getting oxygen into the tissues. It seems to be intrinsically involved in all tissue repair be it neural or otherwise. Certainly I have noticed that bi daily injections have reversed all the signs of ageing and there is, at least one study supporting that.

I also suspect that PA can come and go yet I have seen no studies of that possibility. It would explain why it takes a long time for symptoms to appear and why my bipolar type two like, mood swings were misdiagnosed and treated with psychoactive drugs that had no effect.

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