Hi all, I am new to the forum. I am 40 years old and live in USA and recently diagnosed with PA last Dec. It all started with pressure on head and tiredness and further evaluation with Neurologist, they did MRI Brain / Vit B12 and MMA test. MRI came normal. B12 was <150pg/ml and MMA = 405nmol/L. Folate 17.4ng/ml and is normal. Further GPCA antibodies were tested positive and IFAB was negative. Then it was concluded as PA and started with weekly injections for 4 weeks. Then Monthly injections lifelong. I have completed weekly injections for the 4 weeks. Please advice on the below questions.
1. How long it will take to feel better from the injections treatment? I still have tiredness in the morning and finds better in the afternoon and night. Until couple of months during the PA diagnosis, I was absolutely fine and energetic and suddenly all the tiredness, head pressure, lightheadedness started.
2. I am taking sublingual tablets of 2500 MCG but not sure if this is helping any. Is there any other alternative form of supplementation?
3. I did not lose weight but have Nausea and loss of appetite. While taking injections, the loss of appetite went, but now I am without injections for past 3 weeks and not sure if this is the reason.
4. I do not have abdominal pain. I have heard about the gastric issues and planned for GI evaluation this week. My Abdomen and Pelvis scan were taken (last June, 6 months before diagnosis) and it did not mention anything concerning on stomach. Does CT show any gastric concerns? I am still planning for GI evaluation and endoscopy soon.
5. Reading through internet, I see the incidence of Gastric cancer for PA as Pre-Malignant condition. When I checked the forum, I do not see much / anyone with PA and suffering from Gastric cancer. Please advice.
6. Should I take any supplements to improve the digestive health like Probiotics, digestive enzymes etc. I saw Symprove is good but we dont get it in USA. Any alternative medications? Please advice.
7. My CBC is normal taken in Sep and Dec including Hb / RBC / MCV / MCH/MCHC. Iron is 61 and Ferritin is 55 and in normal range. TSH is normal too. Also PCP did ANA (Anti Nuclear Antibodies) and returned negative.
My PCP does not have much insight on PA other than taking monthly injections for B12 deficiency. She said its all normal and Monthly Injections are fine to live normal life and nothing to be done. She said to do GI evaluation for any gastric issues.
8. Should I be concerned about my Son getting PA now or later?
Apologies for a lengthy email and appreciate your help!!!
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Vinpkd
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People vary in how they respond and how quickly they get back to normal - and for some not all of the issues go away. It is also pretty common if you have neurological issues for things to seem to get a bit worse before they get better.
Sublingual tablets don't work for everyone - there are other alternatives - such as nasal sprays but there are no guarantees and the only way to know is to try. I find high dose oral work for me but I'm using higher doses than the sublingual you mention. I also found nasal sprays quite effective
Doctors tend to think that PA is a once size fits all condition - it isn't = if you look at details of studies on which treatment protocols are based they tend to show huge amounts of variation (eg in how long injected B12 stays in the blood) and even then many of us seem to need to maintin really high levels. There is a really old poll on injection frequency and some were injecting more than once a day.
PA is an auto-immune disorder of the gut that destroys the main mechanism for extracting B12 from food. It also results in problems with absorption of other micronutrients - this is because it also destroys the cells that produce stomach acidity. This can lead to people experiencing bloating etc - many of us will take something acidic with food as a result.
No stomach acidity means high levels of gastrin - and one consequence of this is that patients with PA have a higher risk of developing NETS - there are at least a few members of the forum that are regularly monitored for NETS and any signs that these might be moving on from being pre-cancerous. I don't think this shows up on an MRI and that other forms of investigation are used.
There is a high crossover between PA and other auto immune disorders - prevelance of autoimmune thyroid problems seems to be around 50% so have regular reviews.
Whilst PA does seem to run in families the genetics aren't currently understood - I wouldn't worry about your son at this point but suggest that when he is old enough you make him aware of the family history so he can keep an eye on it - though diagnosing B12 deficiency and PA is a bit of a minefield because of the limitations of current tests and difficulty interpreting them
Thank you Gambit62 for the details. I will try the Oral high dose one. I believe we get 5000MCG. I have not seen Nasal spray and not sure if there is any recommendation on Nasal Spray in USA. Please advice on what acidic food I can take along with food to maintain the stomach acidity?
1. It can take a long time for energy to return. Indeed, for many people it never does get like it was before PA.
2. If you have PA then injections are the only way of getting B12 into the body. So it's no surprise the tablets aren't working.
4. If you have PA then you have gastric atrophy. This can be symptomless. However, it also means you will not be producing enough stomach acid, which can have some effects - bloating, diarrhoea, gas, etc. Gastric atrophy might show up in a CT scan, will definitely be picked up in a gastroscopy.
5. That lack of stomach acid means you will produce more of the hormone gastrin. High levels of gastrin can, very rarely, end up with Neuroendocrine Tumours in the stomach. The reason you don't see much about it on the forum is because I think I'm the only person with NETs. As I said, it's very rare. It's also not scary. My 'treatment' is for them to look at my stomach every year to ensure they're still doing nothing.
6. I'm pretty sure you can get Bio-Kult in the US. If you do have low stomach acid, taking a probiotic can help. Normally stomach acid kills bacteria in your food. Taking a probiotic can help the 'good' bacteria fight off the 'bad' ones.
You may want to ask your doc about having more frequent injections.
There does seem to be a genetic component to PA. But it's not strong. One maternal aunt is the only other person in my family with it, my two siblings do not. So your son is probably slightly more likely than average to get it. But there's nothing you can dso to change those chances, so no point in worrying. Just tell him to eat sensibly and to have a B12 blood check every year.
Thank you fbirder for reviewing and providing details on each points. Appreciate every ones help. I will check with my PCP for more frequent injections. When I checked with her, she said this is standard of having weekly injections for 4 weeks and then monthly. She has ordered another blood work after my 4 injections to see the levels. I will ask if they can do more monthly. My Neurologist also said that the B12 has long half life and whatever the treatment plan is enough to maintain the levels.
We do get Bio Kult here. Any other digestive enzymes should I consider along with probiotic? Please advice.
Hi, I'm also located in the US. The experts on this wonderful website have better information than I can give you but I wanted to let you know there is light at the end of the B12 deficiency tunnel. I have been getting B12 shots for over 2 years now and have found the frequency that works for me. There is a bit of trial and error when it comes to feeling well again. I have determined that I need a B12 shot every 3 weeks. Once a month wasn't enough for me. The 4th week was always rough. Hopefully your doctor will listen to you and adjust your treatment accordingly. Your symptoms will wax and wane during your recovery. It's not a straight path so don't feel discouraged if a symptom pops up after it had disappeared. Also, I am certain there is a genetic component. Since my diagnosis, my daughter, sister, and cousin have all been diagnosed with B12 deficiency.
I am also in the USA. Not long after my daughter was diagnosed with Pernicious Anemia, myself and my other daughter were found to have it. Luckily, in the USA, it is typically not an issue to explain to your doctor when your symptoms seems to reappear and they will adjust. I get injection every other week. It seems to be my sweet spot for feeling well and keeping B12 at optimal level for me. As time goes on you will start to figure it out. I would keep a journal daily listing your symptoms. We have all had endoscopy to watch for any issues as that is recommended. Good Luck on your journey.
In the US as well. Had same treatment plan as you. Felt great after loading doses then started to regress when going to monthly. Convinced doc to give me 2 shots a month. Slowly, slowly starting to feel better again. Good luck to you!
Thank You. I had my GI consultation and Endoscopy + Colonoscopy planned next week. The Gastro said that after the EGD, he can recommend medicine on Digestive issues to maintain acid levels as you mentioned. I will try the yogurt for sure.
I am also in the USA, and my original B12 level was 62 pg/ml, so I was extremely low. I can't answer all your questions on PA (I actually have a related disorder), but I can say a few things that might be helpful.
First, it seems you have access to good medical care based on the array of expensive tests you've already had done, which is very good and was not my experience. After severe enough neurological symptoms to be hospitalized, being denied an MRI by my insurance, and finally getting some necessary bloodwork that I had been requesting (and denied) for years, it was finally found that I was B12 deficient and my doctor prescribed me 3 monthly B12 injections and expected this to completely cure my neurological symptoms; obviously this did not happen. Unfortunately doctors are often completely undereducated on B12 deficiency and its treatment (amongst many other things). I did my own research, which led me here, and at one point I recall reading a post that indicated that each injection really only has the potential to increase blood B12 levels by 10 pg/ml. When I tracked my own progress, I found this to be very true.
After three months of struggling through life with no improvement, I finally convinced my doctor to prescribe me weekly injections. This helped a bit, but I felt the largest improvement after ordering my own B12 from Canada (I got mine from Finlandia) and starting every other day injections. This seems to be the treatment protocol for B12 deficiency with neurological symptoms in other areas of the world (every other day injections until neurological symptoms cease). After that, it seems people really vary in the frequency of B12 injections necessary to maintain a relatively normal lifestyle. So you may need to consider the possibility that weekly injections won't be enough and contemplate some alternatives if your doctor won't comply.
Hi, just to say I have PA and also gastric NETs (Neuroendocrine Tumours) like fbirder, (I was diagnosed four years ago) and would agree with what he says. I also have yearly endoscopes and all is stable, but if there was any change it would be addressed immediately, so I am very reassured. Yes I do get bloating and diarrhoea, gas etc, and sometimes they are troublesome but, unlike others, I do not currently take anything to acidify my stomach, but the NETs themselves do not cause me any problems.
I am fortunate in that my GP prescribes enough B12 on prescription for my needs, but all that could change soon as he is on long term sick and unlikely to return (someone in the same practice has already had her prescription stopped by a locum because he saw that her B12 levels were high on her blood test results) so I will have to start pleading my case again, hopefully the fact that my NET specialist states that 'I am well on B12 supplements', will help my case.
I hope that you can soon find the right amount/frequency of B12 injections to keep you as healthy as possible.
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