Hello all. Wednesday, 8/2/23 and after 1.5 years and countless doctors, I have finally been officially diagnosed with Pernicious Anemia due to Intrinsic factor blocking antibodies (from the IF test). The doctor (hematologist) exclaimed that he would be shocked if my IF test came back as positive because he said I appeared too normal to be in poor health. He said he'd order an IF test but felt it would be a waste of time and told my wife that I was a hypochondriac and was concerned that I was even there to see him because a doctor did not refer me to see him. He also said he usually only sees a patient "IF" a doctor refers them to him. He told my wife that he only sees "unhealthy" patients.
So, I tested positive for blocking antibodies and the Dr. refused to see me for the follow up appointment, instead sending in his PA to give me the news that I did indeed have pernicious Anemia. This PA came in wearing a plague mask and saying they would be willing to prescribe B12 cyanocobalamin shot for me for once a month for 4 months. When we said I needed 3 shots a week at least to start, she said no problem, but when they called in the RX and we went to pick it up, it was for 4 shots only.
Also the PA said I definitely had pernicious anemia, but that I was not Anemic. "WHAT??? I asked why was I not Anemic. She pointed to my blood test results and said it was within .01 of the bottom range for hemoglobin. So even though I was barely inside the acceptable range, I was not anemic, but I do definitely have pernicious anemia. I could not help myself and honestly, I cried as she left the room. There was so much ridiculous information thrown around in that room and my wife was so angry and the doctor didn't even have the decency to tell me himself that my diagnose was positive. His head is obviously too big to admit he was wrong.
OK, so now I am one of you. I feel like a true member of this society. I wish I wasn't, but oh well, I'm sure many on here feel the same. I am new still to being anemic, but I will share anything I know with anyone who may benefit from what we've encountered. My wife is being tested next week as well, so I pray she does not also have pernicious anemia, but wow, her symptoms are eerily similar to mine. One question I have is when you have PA, can you build up B12 reserves in your liver?
Thanks for all the advice and tips so many of you have provided.
MrJustatip
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MrJustatip
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You mat be able to build up reserves in your liver of B12 but you are not able to utilise it .You will need b12 Injections for life at a frequency that suits you.
Get a paper record of your diagnosis.
You don't have to be iron anaemic to have a b12 absorbtion problem or PA.
Depending what country you are in the loading doses differ.
Hope symptoms are not too severe and repair is made soon.
Do supplement folate after b12 has sorted if needed.
Thank you for all your comments and information. I've had problems finding the answer to the "reserves" issue. What you said makes perfect sense, can't utilize my B12 reserves. thanks again
Sounds like this Drs head is so far uphis own ass he cant see the wood through the ruddy tree's. What an arrogant swine of a man. I endured similar with a neurologist.
Do as Nackapan has suggested and get copies of your results.
Fingers crossed your wife does not have the same diagnosis. 🤞
You have always been one of us it just takes them a little bit of time to acknowledge it. 👋 I see you have hashimoto's - yet another joy to behold.
What a load of nuptys we have to deal with. 😟
Is it as bad in the USA or is it just over here with the declining NHS ? What ever it is it's getting worse ! We can wait a year or more to see a consultant here in the UK. As for our hospital letter of the consultation which used to follow shortly after being seen now take months to receive ! It makes you want to give up and throw the towel in. I would not have put up with the ass MrJustatip saw, the swine would have got both barrels.
Good job we can come on here and let off as bit of steam. 😤
I'm really sorry, how frustrating!! Docs and their egos, i'm sure that combined we'd be able to write several books of stories like this. And in 20-30% of cases, PA presents without any anemia, it's been know since the early 1900s :/
But welcome to the club of misfits anyway 😉
Are you in the US? Sometimes they don't do loading doses like in the UK, though they should.
If you need info on sourcing your own from canada or germany, please do ask.
Yes, yes, thank you all for all the support and understanding. And yes, I asked the dr. for 3 shots per week of methylcobalamin but cannot find any RX that carries it, the drug stores only seem to carry cyanocobalamin over here in the U.S., so I am struck with having the cyana. How is it that other countries offer these cobalamins but the U.S. or England does not. So, sure, any advice on where we can purchase it would be appreciated.
I sent you a Chat message and please also see the replies to this post healthunlocked.com/pasoc/po... - I wrote out various possibilities to obtain hydroxocobalamin - the same sterile compounding pharmacies will often make methyl as well. You could even try both The (prescription) Actavis brand is the hydroxy form in the US but there is currently a shortage.
I would hope that with sufficient B12/folate, you would have the clarity of mind to write your book 😊 I am sure many here would be interested.
Also keep in mind that cyano is not per se bad. Clivealive in the UK uses exclusively cyano due to a reaction to hydroxo, and others here from the US use it as well. You may just need to inject it more frequently.
Your doc can prescribe hydroxocobalamine in the IS. Mine did.
However if I want to get it without a prescription then I have to get it from Germany
I suggest at a min, getting them to teach you how to self inject. Then just avoid their BS and buy your own.
I've done well on cyano, esp from Hervert 2mg/ml from Germany. Inject that daily: went from bed ridden to climbing mountains. But that took 2 years. Don't go climbing any mountains too soon *wink*
You at least got a diagnosis, something I never did
I'm in the US California and I get my Methylcobalamin preloaded in subcutaneous insulin syringes from Hopewell Compounding Pharmacy in New Jersey. They do require a prescription but just ask your doctor to send prescrip to them. They'll ship anywhere in the US. I've been using them for 2 1/2 years now injecting weekly.
Thanks for your comments too. Yes, I am planning on writing a book about all of this stuff. It will be a novel, but I'm gathering my thoughts together now for it. I only hope I can manage to think clearly with PA enough to write it.
Hi MrJustatip, and congratulations on finally getting a diagnosis in spite of the doubts from your doctor.
'Pernicious Anaemia' is a poor descriptor, but it's what we're stuck with. Many are anaemic, but not all. You need B12 to make red cells, so it's reasonable to think that eventually you might end up anaemic, but it's a very variable condition. You are indeed fortunate that you have detected IFAb because otherwise, it seems you may have been ignored for longer.
One thing for sure, it's 'Pernicious', and untreated, it will eventually see you off, but the magic injections will rescue you.
Cyanocobalamin seems to work very well for many folks, and anyway, once it's injected, your body will utilise it. Don't panic about the 'Cyano' bit, because although it's cyanide, there's so little, it's of no consequence whatsoever. [I realise I've just set another hare off, and it will be chased by folks on Hydroxy!]
Someone may suggest that tablets can work, and there's abundant evidence that megadose oral B12 can work instead of injections, but it's equally true that they don't work for everyone, so get yourself sorted before you consider experimenting.
Hello, FlipperTD, you're reply is so helpful. Thank you for sharing all that. Yes, the PA said I can take all the tablets or sublingual I want, but it will do me no good due to the IFAb, but then I read where they say you can take the pills or sublingual liquid. So I am still not sure which is true at this point, but maybe it's like you say, it may work for some and not others. Anyway, again, thanks for your response, it is sooo appreciated.
Find something that works for you, and stick with it. Experiment by all means with other approaches because they just might work, but it's hard to tell. Certainly there are folks with IFAb who are able to absorb megadose B12, and then there are those with no detectable IFAb who can't absorb orally. We're more complicated than many folks think, but I think you've got a good grip on what's needed. Get healthy, and stay healthy.
Oh geez Mrjustatip, your story sounds way too familiar! so sorry you or anyone has to go through that.
Now you can wear "hypochondriac" as a badge of honor as you walk into any doctors office and wear it proudly as you've saved yourself from continuing damage by not having a diagnosis.
I agree with Nackapan's post. You should also request a upper GI endoscopy if you're in the US it is SOP when once your ae diagnosed with PA. This is to do a gastric mapping with biopsies taken in accordance with what's called Sydney Protocol. This will determine the extent of any damage to your parietal cells resulting from autoimmune gastritis, screen for gastric cancer as and determine risk and interval of future endoscopic screenings.
This same procedure is available for those in UK and Europe its called Gastroscopy and mapping is in accordance with the MAPS II guidelines.
Do it! when I had mine done they found gastric cancer in the fundus of my stomach right where most of the parietal cells are located. fortunately they found it early that they could just excise it endoscopically so that instance is cured. But now I'm still at high risk of another instance and am screened every six months. I know they say that those with PA only have a 3 to 7 times higher risk so not to worry to much about it but when you find out it's it's you and they find it that risk just shot to a gazillion % (is that a number???) 😆 In other words I suggest to not play the statistics game with your life unless you like to gamble Vegas style. There are lots of winners but all those posh casino's were built by the contributions from losers.
I don't offer this to scare you but it's so important to have this done. Let me know if you'd like more information or if you'd like to privately you can DM me.
So sorry you had to endure being treated like that MrJustatip. The way other people treat you says volumes about who THEY are, not you. Like many other readers here, I am bristling with anger about how this 'doctor' behaved with you.
The 'hypochondriac' crap is essentially victim blaming. Who would choose to feel ill, or go from doctor to doctor seeking out help when they were actually fine? What a valuable and worthwhile use of someone's life, right?! I think some doctor's have a God complex, truly, and they think people are clamoring for their attention because in their own mind's, they are just so amazing.
I have PA and I'm borderline anemic but have quite a lot of neurological issues. In many ways 'pernicious anemia' isn't a good descriptor of the disease because you can have incredible neurological damage with no anemia at all. I wish you relief and healing in your journey!! So glad you advocated for yourself and got a diagnosis!!
I hope you can find a doctor who will treat you with more respect! I found that sublingual B12 worked for me for many years but then it stopped working. In BC (Canada) I can get injectable B12 without a prescription. A family doctor taught my husband how to inject it in my arm. It is really nice to not have to go to the doctor regularly to get injections. I hope you manage to get your loading doses somehow and then to get the B12 you need. With pernicious anemia, we need B12 supplementation for the rest of our lives.
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The (prescription) Actavis brand is the hydroxy form in the US but there is currently a shortage. 
Is PA the same as MA?
Measuring B12 levels after PA diagnosis 
Intrinsic factor test and diagnosis
Visit to hematologist for pernicious anemia
