So, my nurse practitioner tested my intrinsic factor. I no longer have records of when I was diagnosed with PA about 6 years ago. Apparently, she did not feel comfortable managing my symptoms and referred me to a Hematologist. I go see the Hematologist and he tells me I no longer have PA, but doc, I'm trying to tell him when I don't take my shots symptoms come back...plus I eat plenty of meat and take a multivitamin that has B12 in it, to no effect. Well he tells me PA can come and go because intrinsic factor issues is autoimmune which can come and go. My nerve pain is from something else and if I'm going to do the shot; once monthly should be sufficient. I, apparently, really don't need the shot because high doses of oral B12 should work just fine, since I no longer have PA.
Also, my homocystiene levels were below normal which he said is good because they are low. I thought within normal range was good not below normal range. He did not get a medical history for me nor did he spend more than 30 seconds thinking about it. What a waste of my time and money and now I'm just confused. Does anyone here have any information about PA being intermittent? or below normal homocysteine? I thought a person diagnosed with PA because of a lack of intrinsic factor was kind of stuck with that for life. The doc that diagnosed me said life long Injections and nothing about it going away. I really think PA needs a better name, since if your not anemic apparently you don't have it. I am also not willing to go off my shots, I've been there and do not want to be there again. Again, Does anyone here have any information about PA being intermittent? or below normal homocysteine? Thanks for anything you can share. I'm at a loss.
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PaintLadie
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You will be a first if you no longer have PA , after having had a positive Intrinsic Factor Antibody test !!!!!! It often happens that someone with PA gets a negative IFA Test . That seems to have happened to you . Symptoms are of paramount importance . Your symptoms improve after a B12 injection , but not after an oral tablet or food which contains B12 , so of course you have PA . You just need injections often enough to keep symptoms at bay . Your first doctor was right . You need life-long injections once diagnosed with PA. There is no cure .
I am truly shocked that a haematologist tells you that PA can be intermittent . That is not possible . You should ask him to show you scientific evidence of that. Insist on it . He can cause damage to his patients if he believes that .
It is unusual to have low Homocysteine levels if you are B 12 deficient . Between 4 and 10 is considered a good level .
You must get sufficient B12 injections to keep your symptoms at bay .
I have had to turn to self-injecting , which is really easy , cheap and convenient . My doctor would only allow me one injection every 3 months , which was insufficient . We are all different and have different needs . Best wishes .
I'm currently not deficient since I've been SI for a while now. I did have a positive Intrinsic Antibody test, but no longer have documentation. I was too late in requesting my old files which had already been purged. My Homocysteine is 2.6 below the normal level. Yeah weird. Thank you for your response. This hematologist did not have good reviews nor do any others in the area I live. I guess I will have to take his knowledge with a grain of salt even though he let me know he is the expert on B12.
I’m worried about that haematologist you saw , because what he said about PA was total rubbish . Just ask him where he got that information from about PA . Ask him to show you evidence in a medical textbook!
No No No, my 91 year old mother was the first, according to her Dr. She no longer has PA he withdrew the injections two years ago, and now she is bedridden.
Oh, I am so sorry to hear that. My mother has severe brain injury from failure to diagnose and treat pernicious anaemia, despite the blood results and symptoms being there for the doctor to see. They also totally missed her hypothyroidism, then undertreated it.
I'm so sorry for your mom. That is horrible and that's what I worry about. My NP won't be around forever and now the only medical history I have of PA is that I don't have it, since my old files were purged.
Sorry for the late response. I assume that you know that your files are available for 7 years, probably thanks to america, where, if you do not have the money, you are put out to die. Proven on a programme last November.
You right, fine, sane, sensible and there's nothing to worry about you so have more faith in yourself.
Unless you didn't tell him that you regularly SI, the haematologist obviously doesn't know what they're talking about and I totally agree with Wedgwood, if you have to see him again get him to show you where in his guidelines he is finding his information and get him to give it to you as a written copy!
Watch out for flying pigs!! 😁
I'm sure in your case that it's just a result of the intrinsic factor test being notoriously unreliable (see recent replies from fbirder) and a lack of knowledge on the part of your haematologist in interpreting the results.
I'm completely guessing but if you wanted a possible explanation otherwise I could offer that I had been so deficient for so long many processes in my body were broken and I didn't think they could ever recover. However after 4 years of high dose treatment I'm finding some things are starting to work again for the first time in 30 odd years. Possibly, as you SI effectively enough to lower your homocysteine levels so effectively, there is a chance that not all your parietal cells were knocked out before and with enough B12 and supporting supplements they are working again and may have multiplied up... but as I said, I'm only guessing and have no science to back it up.
The relevant thing is that you need your shots so even if it has started to work a little bit, it isn't enough.
Generally low homocysteine levels are considered a good thing and very much to be expected if you have got your balance of B12 jabs and supporting supplements at the right levels for you so they are working optimally.
I have found the following article on low homocysteine levels and it seems to be sound and useful.
I totally agree with you (and a lot of people) that the title PA, given around a century ago when the knowledge of the condition was embryonic, is a misnomer. In many cases, including mine, it causes a lot of problems with getting treatment.
Either way, you're fine and need to keep doing what you're doing! If you need to buy your own jabs kit to carry on, thankfully it is possible and not too expensive.
Thank you. I don't plan on seeing this doctor ever again and I'm a little disappointed my NP sent me to him. I do think I will be sending him a letter or email or at least a review. I just wish I new more about my own condition to be able to give him an educated smack down. Yes, he did know I've been on on injections everyday, but said that seems excessive.
Could it be that he defines pernicious anaemia by the size of your red blood cells alone? I'm not sure if the size varies, but it might after treatment. I have read that this can be a problem in diagnosis and definition. You are right, of course, to point out that you have been having treatment, so your B12 levels may not be obviously down. My doctor advocated weekly b12 injections for my partner and they have really made a difference, but he is the kind of doctor who makes other doctors look like time-servers.
Yeah, I think that's the problem he said I'm not anemic. When I was diagnosed I had by the book PA, megabolastic blood cells, positive intrinsic antibody test, symptoms everything. I've since had my cells enlarge from time to time when I was not receiving proper treatment. He didn't need a history apparently. I think the name needs changing with Pernicious anemia being one of the symptoms of this larger gut, absorption, lack of intrinsic factor thing resulting in a blood disorder and many other problems . Maybe then doctors will take it seriously.
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