Pernicious Anemia

[Missy-Mae]

I have been diagnosed with B12/Pernicious anemia. I was taken off injections because my b12 level was at more than 1500. I began having sudden diarrhea, tingling feet, confusion and spells of fading away with smelling odors from the past i.e. like when I was a child. I took b12 tablets but they just didn't work. Doctors treated me as if I was lying and would not give me prescription for b12 injections. For the last three years I stayed home worried that the symptoms would hit me suddenly.

I finally found a Doctor who treated the symptoms and give me the injections. I felt so wonderful and had to have an injection every 7 days to keep the PN at bay. After much research I believe I have had B12 deficiency most of my adult life. PN runs in my family, my aunt and cousin were hit by the disease.

My folate serum tested positive for PN and I was informed that I was B12 deficient even though my level was at more than 1500. My Parietal Antibody test also came back positive. I was now in a fight to have my previous doctor to help me; to no avail. I was beside myself and questioned by sanity. Even though she had previous diagnosed with B12 deficiency and provided injections; she refused to answer my questions and slammed her door in my face. Thank goodness, I found a doctor who helped me.

I am forever frightened that my injections will be taken away and, I don't know what I'll do to maintain my health.

[Gambit62 Administrator]

Sorry to hear that you have been so badly let down by a doctor. In many respects the most frightening thing about B12D/PA is the way it is mistreated.

Injections may not be the only option - I find that a nasal spray - in sufficient doses works very well for me. Others find sublingual tablets or skin patches work for them - the idea is finding away of delivering B12 that doesn't actually involve using the gut - which is probably why the tablets you took didn't work - though even there some people do find that if they are given really high doses (>1mg - something like 500x RDA or even 10mg can work for them). This is because about 1% of B12 is absorbed outside the ileum - so very high doses can result in enough actually getting through.

Failing that it is possible to get hold of injectable B12 from countries where it isn't a prescription only medication (generally because a lot of countries make all injectable substances prescription only). I source some injectable B12 from a pharamacy in Germany. It is possible to treat yourself and many of us do it because it takes away the fear that you speak of.

[Meggymoo63]

You cannot have your B12 stopped if you have PN, it is treatment for life. Join the PN Society online lots of info and guidelines on there. Blood test are inaccurate unless testing just the active B12 in your body. I tested for high B12 but that shows B12 is getting to my cells and working the only problem I have is convincing my doctor I need to stay on 8 week jabs to stay well. No mean feat either when I work full time.

[Missy-Mae in reply to Meggymoo63]

Thanks, it is so good to have someone to talk to about this health issue.

[Lisahelen]

Personally i would get copies of all the tests you have had which are relevant to your diagnosis which indicate the reasons for needing the injections, ie your p,anti test.

It might help to get a copy of your notes from where this other dr began treating you too. At least if you have a copy to hand it cant be dismissed as easily as when a gp has to try to trawl through notes on a screen.

[Missy-Mae in reply to Lisahelen]

Right now I am getting my b12 shots and all my health info in readily available if I choose to go to the Mayo Clinic which is always an option.

After years of anxiety medication and diagnosis of OCD and Anxiety Disorder,' I find I don't need to take very much of this medication after beginning on b12 injections. You can see why I am so concerned about not being able to get a prescription.

I really blame the previous doctors for not listening to me. There is an epidemic among health professions to rely entirely on tests and not on the symptoms. I have suffered for that and resent it.

Thanks you for your response.