Hello all. Only weeks ago did the term pernicious anemia come into my life. Knowing now, I can look back and see possible issues for years. Back in 2020, I went through a bunch of testing related to my heart due to having pain, tightness and feeling like I could never get enough air in me. All came back good. Over the years, I have struggled with random bouts of lightheadedness and nausea but always chalked up to having mild high BP. My feet go numb super quickly in the cold, even with heavy socks and winter boots. My right hand gets a lot of tingling and finger numbness which I was relating to shoulder/elbow issues causing pinched nerves even thinking maybe carpel tunnel. I have always had anxiety, and brain farts, but I have ADHD. More lately, I noticed my balance going out the odd time, and have caught myself in conversations feeling like I was having a hard time going from thought to word. Weeks ago, the tingling was in both hands, and also my feet. At night, it would be up my lower legs too. My fingers felt so cold all the time, and I was having much more lightheadedness and Nausea. That weekend, I felt like a bag a crap and called a Dr (not one I have seen before). He saw from previous tests my blood sugar levels were great, and thought it could be COVID; however, with the tingling he wanted me to get bloodwork to check for Diabetes and a few other things, one being B12. Well, yup B12 came back below standard levels. Two days later I had more blood work to determine why. Everything came back negative, except I tested positive for Anti-parietal Cell. Since then I did an injection phase of B12 every 2 days for 10 doses, which I just finished, and now am on daily sublingual pills. I go for more bloodwork next week to check my B12 levels and need to do a stool sample (fun). The Dr also consulted with a GI specialist who said to refer me over for a scope, which could take a while to get in for.
So, what do I need to know? What have you found helps? What have you learnt about PA that would be helpful? What should I watch for? Any tips, lessons or support would be greatly appreciated.
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Tater2020
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I am also a newbie, I was diagnosed like you on Friday 13th of September with jaundice, megaloblastic anaemia and positive for parietal Cell antibodies.
Yes you are most probably correct that you have had this since 2020 and before. An alternate term for us is Autoimmune Gastritis (AIG/AAG, confusing). Unfortunately there will be much you find confusing. It is difficult to decide where and what is the correct information from any source. However there are many helpful members on this site who have a wealth of knowledge and are generous to assist you. You are in the right place.
Another confusing thing I have found is there are varied symptoms and levels of vitamins you will need.
I received my scope on 14th of November with results of mild atrophic gastritis, amongst other not too concerning findings. My next appointment with my Gastro doctor is in September next year, WTF. I was assured by a nurse that it was a good sign that everything went well because I do not have an emergency appointment scheduled with him. He did speak to me after I came out from my scope while still somewhat sedated, but have no recollection of that. Frustrating!
I will give you some advice as I see it from myself newly dealing this condition.
Firstly take caution with the advice that the daily sublingual tablets will be sufficient, your doctors have no proof that they will be, perhaps now it may work, over the years it most likely will not and you will need injections for life. There is wildly differentiating advice and doses given to patients with this condition, people on this forum will be better able to assist you with that. I have also had all my loading doses and am now on 1mg injections for life at 3 monthly intervals. I suspect this is not enough so I have been taking 1.2mg daily sublinguals as well. My doctor told me they probably won't do anything, so I took it as "WELL I'M GONNA TAKE THEM ANYWAY JUST IN CASE". I suspect that I do infract still absorb some from food and sublinguals, time will tell.
You need Iron studies, vitamin D, & folate testing over a period of time to be safe. Before my loading doses my ferritin(iron) was at 182, two months later it dropped down to 40 (it should be somewhere between 30 and 400, for us the optimal level should be over 100, which I am not). My doctor has asked me to take iron and folate pills for three months, but mentioned they may not work, not helpful! My folate has always been fine and stable, some people have issues with this, not me. I did have a vitamin D issue and took loading doses for that which mucked up my calcium blood levels and thyroid, My calcium blood levels have gone back down and I will only take them in winter now. Be careful with vitamin D less is more, in a way as it does interfere with other blood/hormone systems. Don't take more vitamin D than advised and in good weather opt for the sun to dose you, it will never over dose you. But be sun safe, don't get burnt. I have opted to take my iron supplements with vitamin C rather than folate because I have never had an issue with my folate levels and without proof that your vitamin B12 levels are fine, it may hinder your neve damage healing. I am not 100% on the nerve damage healing with folate, but I am taking no chances.
A frustration you are most likely to find is that medical professionals do not have much knowledge on this condition so will give you half baked answers where you want concreate ones. This forum is fantastic in clearing up issues where doctors fail us. But be aware we are all so different, there may not be one correct answer to your questions. Listen to all the advice you receive on this forum and apply it where you see it applies to yourself and what you are going through. You will have to take the lead on how you wish this condition is to be treated with your own experiences and findings.
I need to make a daily diary entry of what I have eaten, what vitamins I have taken, exercise done and how it affected me and how I am feeling mentally and physically with any suspected or weird symptoms for myself and for my doctor to review as this will assist us to understand what does and doesn't work. I am also compiling a spreadsheet of advice or information from the web and this site because I find so much good information and never remember where it is from. Trying to inform yourself and make correct decisions is an overwhelming thig to do at this point for me, hopefully it will get easier. I find my head is spinning sometimes with all that I am trying to take in.
Lastly be gentle on yourself, you are in the right place doing the right thing. Step away from it all and give yourself a break as needed so it doesn't take over, you will figure it out over time.
Thanks Wedgwood, you are one of many that takes the time to answer questions. It is a an angst driven time to sort all of this out and feel somewhat comfortable that you are going to be okay. Been there, done that, confusing and confronting. 😍
Can’t reply to you at the moment , but you are so very welcome . I have to rush off to Wales now ( no, not New South Wales ! I’m in U.K. ) I must just say that not all P.A. patients can get any help from oral tablets/ sub-lingual . I am also a diagnosed P.A. patient ( positive Intrinsic Factor antibodies test, but about 50 % of P.A. patients do not test l positive ) We all need different regularities of B12 injection, to keep symptoms of B12 deficiency at bay . It means life long injections ,as there is no cure for P.A.
Sorry , but I must go now . But you have come to the right place here . Very best wishes .
I was diagnosed in July 2024. My background is chemistry (PhD) long time back. After about 6 months of B12 self-injecting weekly (many do every other day) taking Iron, methyl foliate, B6 and B2 plus vitamin K. I'm feeling pretty good. Energy largley returned, I can run 7km and still have enough energy for a late evening, brain fog much better etc. I was previously ready for bed at 6pm fearing I might have to give up work.
My take is that PA may be several similar but different conditions that all link to vitamin B12 metabolism so one size will not fit all in terms of treatment so you will need to reasearch, test and learn what works for you.
You should continue on the every other day B12 until your symptoms are gone (e.g. the tingling). Then you probably need injections for life. Some people get by with just supplements. Most of us cannot.
The term PA is sometimes used for megaloblastic anaemia, a type of anaemia associated with B12 deficiency where red blood cells are larger than normal.
In some countries, the term PA is used as a general term for B12 deficiency.
A few links that might be useful.
Pernicious Anaemia Society
PAS are based in Wales, UK but have overseas members.
PAS membership is separate to membership of this forum.
Search for "B12 deficiency Wolffenbuttel" to find other useful articles he's written including one for BMJ (British Medical journal) and one for Mayo Clinic in US.
I can see you're in Canada.
I suggest people search for regional and national guidelines on treating PA and B12 deficiency for their country.
I found a few articles when I searched online for " B12 deficiency guidelines Canada".
Pat Kornic is a Canadian researcher/campaigner on B12 deficiency issues.
There are other forum members from Canada. Might be worth searching forum posts with term "Canada" to find them. Click on Posts tab at top left of page if on computer.
I think that in some parts of Canada it's possible to buy injectable B12 over the counter from pharmacies.
I think in the past there was a PAS support group in Canada but not now. PAS would love to hear from people in Canada wanting to set one up.
I'm not medically trained just someone who suffered for years with unrecognised and untreated B12 deficiency. I'm in UK.
Hi welcome to the weirdest club!You have clear neurological issues - peripheral neuropathy. According to the recent changes in the NICE guidelines you should be on every other day injections until that ceases.
Whilst you are politely pointing this out to your G.P. you could ask if you could self inject and get what you need on prescription. It's the nurses time that costs. B12 plus syringes is about £2 per shot.
Self injecting is not hard.
I'd be very surprised if sublingual supplements have an effect and in the meantime you risk worse and more permanent damage.
Once you have got the B12 supplies sorted. Then and only then, take some extra folate in the form of l-methylfolate, not folic acid.
You need vitamin B12 for DNA replication, brain and nerve myelin, hemoglobin, immune system T cells, ATP energy generation in you mitochondria and protein recycling in the liver (in conjunction with folate and B6), amongst a myriad of other body functions. High homocysteine is an indicator of the bad state of your liver. Unable to break it down due to lack of B12 your liver binds homocysteine to fat.
Reversing out is a roller coaster ride, but on the bad days rest well, stressing out doesn't help mending, and know it's just your system having a good old bang with the spanners as it clears out decades of debris it had to store rather than being able to excrete.
Big hugs and you are in the right place for good information, or just a good old moan if you need. 🍀🍀🍀🍀🍀
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Testing for PA 
Struggling to understand the possibilities
B12 deficiency, PA or something else?
Advice needed please
Very new to this any help please 
