Hi Sowle

I got tested in March for B12 when I went in to my gastroenterologist for GP problems. My level was so low the machine couldn't even detect anything...! He had prescribed to me one shot a month!After a month I still felt terrible. Then I went to see my internal doctor and she was realy worried about my level. She gave me 14 shots in a row daily and now I am down to one a week plus sublinguals (500mcg) each day. I feel a lot better but it definitly took at least those 14 shots to see a difference. I have not tested again my b12 again yet but will be soon. i ll keep you updated.

I think one shot a month is not enough personally from my experience... maybe you should go see someone who knows more about this disorder. You will feel so much better if you are able to get your level up!! It also helped with my nausea due to gastroparesis a lot!! Please tell them how awful you feel and try to get those weekly shots!!!

Ps: sublinguals for B12 are absorbed better than the regular pills try taking those also!

I figured the one shot was not enough in my system, so I will be going for my 2nd one in July.
I have to look up sublingual--I am not familiar with that term.


I am curious to see if I will lose the 2nd shot out through my urine. My GP is great, she is very good and very proactive. I have better luck with her then I have had with the Gastro's.

I am so happy to see you here. I might put a post on the gastroparesis and gastritis letting others know it's here.

Sublinguals are put directly under the tongue and it dissolves going into the blood stream faster and better absorbed than by the digestive system. I get mine at whole foods. They have no taste and take a while to dissolve but it's definitly a better option ;)

Oh okay in my world that is like a tincture--Just without the vodka--LOL it's taken like a Nitro Pill. That makes sense. I am for anything that gets into the bloodstream quicker, to where we can override our stomachs.
Cause who knows what happens when things get in there.--LOL!!!!

When they did you endo what was found? Mine found nothing abnormal as it was written. Side note stated I had Chroinc Gastritis, Very Low Stomach Acid, and alot of Bile. HMMMMMMMMMMMMM and that's normal??????? From what I have read some people who don't have a gallbladder have a problem with bile in the stomach. I still don't think that's a NORMAL stomach. But Im not the dr but sometimes I think I should be. I am the one pointing them in the right direction--HOW much is that worth to where I can charge my hard work and research back to them???????????????

I wrote on the gastroparesis group what was found during my endoscopy..pretty gross. but Yea I feel so much like you when it comes to some doctors I am the one saying" but this isnt normal "and "I have read this or that" pointing them in different directions! Even when I started having panic attacks no one was able to tell me that it was a panic attack... I researched and found on my own and that goes the same for pretty much evreything else!!! Sad but true. We probably would have been good doctors ;).....!!!!

I will have to go back read what you wrote.

I am a researcher by nature I think. If I hear something that I don't know or just blows me away, I have to research it.

Since I have been so ill with all this stomach crap, I have found so many other interesting disorders and diseases that I am grateful to just have Gastric Issues. There is so much sickness in the world, and most of it due to the food we are eating. Dr's preach to eat healthy etc etc. well most of them should practice what they preach, or come forward to help make gov't controls cheaper and better access to healthy ways of living. NO they wont do that because they are making too much money off sick people. Sorry I could rant on forever.

We need to come up with a new topic--I was hoping more people would have come on to join us by now. It's still new!!!

him i became so weak, unable to concentrate to the point i could barely use a phone. I only have 1/3 of my stomach left due to cancer I was the one who had to tell the doc. i thought i needed B12 inj. It took about 3 mons. before i noticed any improvement. It literaly saved my life. If you do not have the intrinsic factor in your stomach you cannot absorb B12. Thats why it must be injected. Pills will do no good at all.





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Sorry only part of what i said is here. i'll just leave it for now.

I have had injections now since May and my levels have not improved much at all. I have pain and discomfort from every shot I have had. I currently get them in my hip because I don't experience as much muscle weakness and fatigue. When I was getting them in my arms my arms would literally go knumb to where I couldn't move them. At first we thought it was the nurses technique, but I have had different nurses trying different techniques and all the effects were the same. I am continuing the shots because if dont I will be worse off. If I could get a straight answer from a dr, it would be great. Every one I see has a different opinion and disagrees with what the test are showing. Soooooooooooo I don't know if I am missing the IF or not but I can almost say I probably am. My GP is the one that found the PA. I have to say my GP has been a gem, if it wasn't for her I would probably be near death by now.

Everyone, B12 injs. saved my life. I do not have the intrinsic factor in order to absorb any oral B12, so it wouild be a waste of time to try and get enough into my system.

Before the injs, I was hardly unable to walk or to concentrate on anything. It took about three mons. to notice a real difference.

Hi people , I hope you don't mind if I join this group. I have not been officially diagnosed and unless I find a doctor willing to listen I probably never will. I have been feeling like I was dieing since 2 years ago. A statin killed my stomach and whole digestive tract. I won't go into that now but an indoscopy diagnosed me with chronic gastritis and a hiatal hernia. I have been getting weaker and weaker dizzy. I always had lots of iron and now doc says I have low blood count. I got him to check my B12 it was 373 . He says that is normal but I had taken 1,000mcgs the day before the test. Hope you don't mind if I lerk. I felt so awful I decided not to wait any longer. in case he wouldn't let me take the test. I will take my liquid B12 since doc says I don't need shots or suppliments. By the way my great grandmother had pernicious anemea.
Linda.

Hello All. I am very new to this group. I was diagnosed with pa in 2004. I received one shot of B12 daily for 14 days and now recieve them (self-injection with perscription) once ever other weekly. I do have the okay to take it weekly if needed. I am not sure how the physicians determine who gets what. I tend to get very weak, my tongue hurts and my breathing gets a little funny when I get too lowl. My physician feels I know my body better than anyone else but she checks my B12 levels pretty regularly. Does anyone else here self-inject? I have no intrinsic factor but was told to go ahead and t5ake sublinguals. I do not normally bother with it however, I do not notice much of a difference and with all the other supplements I take (CoQ10, Vit D, multiple vit. folic acid) I feel like it is just one more thing. Does anyone else take folic acid? I was told by different doctors if I have pernicious anemia, I am more than likely folic acid deficient as well. They seem to go hand in hand.
Sowle,
I could hardly walk when I was finally tested. My mother had pa and I was lucky enough to go to the same doctor. She took one look at me and sent me for testing and she was right, it was pa. It was a terrible experience and very terrifying. Are you injecting intermuscularly?
PenelopeAnn

Hi PenelopeAnn welcome to the group. I apologize for not repling sooner, I don't get on the site much.
I have been receiving B12 shots now for a year, and I have had no benefits from them. Actually my anemia is getting worse. Any physical activity will set me into a tail spin. I get to where I cant breathe, I sweat profusely(I am always cold, no matter what), and I get extremely light heated. I wanted to start a sublingual supplement and I just read that most OTC varieties are Cyanide(sp) based. If anyone is using an OTC make sure the label states Methylcobalamin, we don't need to be adding Cyanide to our already damaged systems. My dr doesnt seem to test my levels but 2 x a year, and she doesnt seem to be too concerned, however, I am, so I will supplement on my own. I am switching to the b12 patch. The injections don't work for me at all, and I cant have them injected in my arms or legs, they cause them to go numb. That is just not acceptable to me, since I have to drive myself home or back to work, and the numbness lasts about 2-4 hours. It's amazing how they cant give me an answer why this happens.

PA is just one of the major issues I have going. I will be working soon with a dr out of NYC for Leaky Gut Syndrome. I have lost over 35 lbs in just a couple of months because I can not eat hardly anything. For now I am eating a LGS diet--which is paleo based and I am able to eat a few combination foods. I truly believe my PA is a result of the LGS. The LGS is a result of intestinal Parasites that has not been expelled. Dr in NYC is thinking Candida, even though I don't have the "typical" symptoms of Candida. Since I don't eat grains, or sugar that might be why I don't have those symptoms.

I was on Mass doses of vitamin D and I have been dropped back to the "normal" prescribed dose--I haven't seen any benefits of that either.

There is another pernicious anemia group out of the UK. It is done online though. It used to be free but now they chrage a low fee so they can keep the site going. They also do quite a bit toward education and things. I beloned to it until a couple years ago. I may join again though. There are a lot of people on thereare from the States. I self inject. I do not have any issues with arms and legs going numb though. It seems to work for me, levels are good.. I have other problems as well. The bioggest right now is having myasthenia gravis, which is a neuromuscular junction disease. The treatment plan they developed for me raises concern for my doctors and myself, due to my B12. The treatment destroys B12. I learned on the UK site that soda drinks can do the same. it sounds like the doctor needs to test your levels more than twice a year.

I wish I had your luck with the b12, do you know what form you were given?