hi there I'm rather embarrassed but don't know where else to turn to but social media. I'm a registered nurse but I find myself confounded by my ongoing symptoms. Basically I will tell you in short what has been happening in the past 10 weeks. first I want to tell you that 10 years ago I had similar problems but after one year they just subsided on their own. And now it's back… My symptoms now, which I said were similar 10 years ago, is extreme burning through my entire abdomen… Literally feels like it's my whole large colon and small intestine. If I eat anything raw like vegetables that are green or tomatoes… Not to be gross but they come out like that after in complete burning pain throughout the night. I'm a night shift or so the pain usually happens around 3 AM every night. i've had a couple of tolerable nights in between. When I'm awake I'm lightheaded all the time and terribly fatigued. I've seen all the doctors you can think of. I saw the same G.I. doctor I saw 10 years ago who chalked it up to perhaps a gluten problem and to just avoid gluten. He had done the biopsy and everything and the bloodwork and it was all negative. 10 years ago I was also having frequent hives to which I saw an allergist and he told me that I needed to continue eating gluten because that wasn't the problem. I ate it with no problems for 10 years. But i did notice that I had a problem with dairy… Recently did a whole allergy panel with this allergist and found out that I am indeed allergic to so so so so many foods… Wheat, soy, and dairy, shellfish… were all positive in the blood. so I'm back to eating gluten-free dairy free and soy free… Anyways the symptoms have not subsided. I switched my G.I. doctor because he did an upper endoscopy and was doing tests like I was a guinea pig because he had no clue what to test me for… He just kind of rolled his eyes every time I talked during the consults and all he would do was write down with his pen and paper and not discuss much with me. So I switched to a doctor that I see frequently on the unit that I work at. God bless him he is trying... he did a colonoscopy and found two polyps in my right ascending colon but the biopsies didn't really reveal anything. He also did a small capsule endoscopy and told me that he just saw some little abnormal vessels. He then told me after three weeks of waiting for the small capsule endoscopy results because he just kept putting it off because he claims that he wanted to look at it over and over again… He said to me, "you know what we're just gonna go ahead and try out mesalamine and see if that gives you any relief because you maybe have Crohn's". He said that the polyps were probably inflammatory… But I'm confused because he had originally said that the polyps were totally nothing. He had originally told me that those polyps were perhaps polyps that have been there since I was a child… Even despite after me telling him that I had a colonoscopy twice over nine years ago and they had not found them. nonetheless, this medication is doing nothing for me in fact I feel like the burning is worse. I do see a hematologist who gives me weekly IV iron because apparently my ferritin was 25 which is not below range but he found it necessary… My H&H was not Low either but it was in the lower range. That doesn't seem to be helping… I also saw an Endochronologist because I thought maybe it's my thyroid. I checked my own records online through the service and it says a 48 for thyroid peroxidase antibody's… which is higher than the range that stops at 40 .But my TSH was normal and so was my T4 and T3. I have to talk to her about those results on the 24th as she does not know that I have seen my results. anyway I realize that I'm going off on a tangent but things keep building up and my depression and anxiety is tenfold. I have to work and it's so hard to concentrate at work not to mention dangerous when I'm in so much burning pain and dizziness. My B12 is in the 1300s. I don't take any B 12 supplements and I'm curious to know whether or not my body is even using the B 12 and if that's why it's high? maybe it's just circulating around my blood but not actually being absorbed properly. They haven't even checked an intrinsic factor… I don't even know if the symptoms I have are like pernicious anemia but I do know about the burning. Does anybody have these problems? Instantly when I think of burning pain I think of diabetic neuropathy. My A1 C is a 5.9 and usually burning pain doesn't derive from the abdomen affecting bowels… My symptoms are constipation diarrhea… Do you know what I mean? Like when you don't go for a few days and you have some burning pain or abdominal regular pain and then when you finally do go three or four days later it's a little bit at a time, loose, and sometimes diarrhea. I don't have any visible blood in my stool although my occult stool was positive. I just don't visually see any… The only time I did see some in the past was if I had a hard stool but it was red. And this was before my symptoms. The burning pain gets so bad that it goes down both of my thighs and I get bloated and it feels like I have a bladder infection because it presses on it and burns. Symptoms are worse around my period time. I'm basically just airing out my frustration thank you for Reading this if you've gotten this far… It's 6 AM and I haven't slept because I was up crying in burning pain... please anything helps. I can't get any doctor to listen to me properly. If I say check my intrinsic factor I get ignored… I'm running out of money with all these damn tests. My insurance company is wondering why I'm going to so many doctors. I'm so annoyed… did I mention that I'm only 30?
pernicious anemia?? but high b12 - Pernicious Anaemi...
pernicious anemia?? but high b12
Hi, I'm going to answer just a bit of this as I can't comprehend all of it due to my PA foggy brain.
I have read that you can have pernicious anemia and elevated b12 levels. Since PA is autoimmune there is really nothing precluding the existence of an auto-antibody affecting the uptake of circulating b12 into the cells and nerves. Lately I've been learning about transcobalamin II auto-antibodies. One article that I have found on that subject:
In other words, having b12 in your blood doesn't necessarily mean that it is getting where it needs to go at the cellular level.
Burning leg pain,anxiety, chronic constipation,and severe cognitive issues were the most prominent symptom of my PA aside from my GI and digestive issues. My PA was diagnosed "accidentally" by endoscopy and biopsy because I had epigastric pain, difficulty eating, feeling of fullness if I ate, bubbling or gurgling in my stomach, and queasiness. My GI doctor was attributing all of those symptoms to constipation and didn't expect to find anything else. The biopsy showed autoimmune atrophic gastritis with intestinal metaplasia and near total loss of oxyntic cells(same as parietal cells). Antiparietal cell and anti-intrinsic factor antibody tests were also positive. The GI doctor suggested testing MMA and homocysteine, but my GP began b12 injections before testing those so I do not know what those levels might have been. If you are not supplementing with b12, you can request MMA and homocysteine tests. The burning thigh pain felt deep as if it were in my bone marrow and kept me from sleeping. After a month of weekly b12 injections that pain subsided, but it returns if I do not have weekly injections at this point in time.
As for your elevated anti-TPO antibodies, you may have autoimmune hypothyroid called Hashimoto's. I also have high anti-TPO antibodies and the Thyroid UK board has suggested that I have Hashimoto's which has not yet gone symptomatic and hasn't affected my TSH or other thyroid blood levels as yet. I have learned that PA and autoimmune thyroid (Hashimoto's) frequently exist together from articles that I have read.
I hope that this helps and that you can soon get some answers.
thank you that helps big time. I have those same problems..during mind off to be they found gastritis but did not do any further tests like intrinsic factor. They just pretty much told me I had gastritis and to stay on my Omeprazole. The pain and my thighs… The burning pain is also so deep that it feels like it's on my phone. I'm going to pay for the private tests of Homocysteine an MMA.Will keep you updated 
thanks again
You're welcome!.Did they do a biopsy of the stomach body during your endoscopy? The endoscopy itself only revealed gastritis to my GI doctor, if not for the biopsy showing loss of parietal cells and probable autoimmune gastritis I'd still be undiagnosed, unless of course, by some strange stroke of luck the GI doctor tested MMA and homocysteine.
Another bit of info that you might find helpful is that omeprazole is a proton pump inhibitor made to lower stomach acid. In PA, the discomfort and difficulty with digestion is caused by decreased stomach acid as parietal cells are depleted. (Parietal cells secrete stomach acid as well as intrinsic factor). Taking omeprazole and other PPIs will only lead to more problems with PA, as will those over the counter antacids with calcium carbonate. There is a tendency for doctors to lump GI issues together under "acid reflux" and prescribe PPIs. Since I've been diagnosed with PA, I've been advised to try apple cider vinegar in water to attempt to add some acidity to my stomach.
Here is one article that I've found regarding PPIs which is a wealth of information: ncbi.nlm.nih.gov/pmc/articl...
Have a good night and I will look forward to hearing what you find out. All the best!
hi yeah I know all about the PPI… Unfortunately I have tried to stop taking it. I tried for a week I did the whole apple cider vinegar, Pepcid… I just can't get off of it. I felt so much worse off of it with the acid reflux. i've decided to continue it and then just replace things that I become deficient in because I just cannot get off of it. I do remember 10 years ago when I had similar symptoms, the symptoms were the same before I was prescribed omeprazole. I hope that I can get off of it someday.and yeah they did the biopsy but they said it was negative. But I don't know what they actually checked for. Maybe he just skipped things like intrinsic factor and parietal cells and all that.
I hope they can find the cause of your symptoms soon, take good care of yourself and try to relax in the meantime. Goodnight.
What is PA?
My b12 is high and so if folate. Trying Cleveland clinic next.
it's pernicious anemia… It's a B 12 deficiency I can wreak havoc not only your nervous system but in so many other ways.medlineplus.gov/ency/articl...
thank you that helps big time. I have those same problems..during mind off to be they found gastritis but did not do any further tests like intrinsic factor. They just pretty much told me I had gastritis and to stay on my Omeprazole. The pain and my thighs… The burning pain is also so deep that it feels like it's on my phone. I'm going to pay for the private tests of Homocysteine an MMA.Will keep you updated thanks again
It sounds like you have r similar to me. Problem we have is b12 is high in blood but we lack INTRINSIC FACTOR so your body can't absorb the b12 efficiently. My advice is do not go back to GP just buy b12 injections from Germany or france. Get back in contact for dosage and providers. . GP S GENERALLY DON'T LEARN ABOUT B12., SPECIALISTS R EVEN WORSE I'VE BEEN WRONGLEY diagnosed for 10yrs with MS
oh my god that is a horrible thing to be diagnosed for 10 years. My cousin just got diagnosed with that and I can imagine you thinking you had that for 10 years.… This morning I'm going to get my homocystine checked. I have paid out-of-pocket to a private lab and we'll see if they can check intrinsic factor anti-bodies and MMA. Thank you keep in touch. By the way do you feel the burning? And does it affect your gut?
I re-read the first half of your post, yesterday I completely missed the part about the polyps. It's hard for me to comprehend more than bits at a time at this point. Thankfully, there are great Admins who can explain much better! Please be sure to continue to follow up with your gastroenterologist.
Thank you so much for your time... it helps, really
oh my god that is a horrible thing to be diagnosed for 10 years. My cousin just got diagnosed with that and I can imagine you thinking you had that for 10 years.… This morning I'm going to get my homocystine checked. I have paid out-of-pocket to a private lab and we'll see if they can check intrinsic factor anti-bodies and MMA. Thank you keep in touch. By the way do you feel the burning? And does it affect your gut?
Some Dr's think ms doesn't exist and it is Cobalamim deficiency/malabsorption. Tell your cousin to stop b12 injections. They will be ruining her or his life. Do b12 injections early... Longer it's left the more time it takes to recover. Sooner the better.
THank you so much, I'll let him know. I'm not sure if he takes b12.
There are a number of things that can cause problems absorbing B12 from food including PA, Coeliac's, Crohn's, low stomach acidity (which could be related to PA), drug interactions,h pylori infection and drug interactions including PPIs
Symptoms of low stomach acidity are pretty much the same as high stomach acidity. Some (including myself) find that treatment with B12 eases the acid reflux but I also find using some lime juice helps.
PA won't cause high levels of B12 - it will lead to a B12 deficiency because it stops you absorbing B12 from your food.
However, some people respond to high levels of B12 in serum by shutting down the mechanism that allows B12 to pass from blood to cells - this reaction also seems to result in excess B12 being retained longer in the blood. This will leave you symptomatic of B12 deficiency because you are B12 deficient where it counts - at the cell level - this is called functional B12 deficiency. Rather counter-intuititively one of the best ways of treating a functional B12 deficiency is to raise levels in blood to a point where there is so much that it beats the body's reaction and enough trickles over into cells.
Some people just have higher levels of B12. However, there are a number of conditions that can result in raised levels of B12 - relating to liver and kidneys - and it can be an early indicator of cancer so you may want to follow up on these possibilities with your doctor.
thank you those are actually very accurate things. Believe me I've been through the gamut of tests… I've been poked, probed, stuck… You name it! all for them to tell me nothings wrong. I can't even tell you the amount of times physicians have tried to prescribe me anti anxiety meds. I told him well wouldn't you be anxious if you feel awful all the time but everything comes out negative? lol I remember when I had these feelings 10 years ago I just gave up and about a year it all subsided. that's all I have to hold on to…
If you want to try getting off ppi you could try betatine hcl with pepcided. Might not work since you have already tried apple cider but it is a possiblity.
Sorry you are feelingso unwell
Thank you, that is something I have thought about.... thank you again. This forum really helps with the support. I don't feel so alone in this. <3
IMHO, everything you're describing sounds like a SEVERE B12 defiency. It's counterintuitive thinking, as your readings are coming back so high. Only after I came down with debilitating peripheral neuropathy (that was not due to diabetes), did the doctor's think to check my B12 level ~ and it came back at 1,405! This was a red flag to them that any regular B12 I was ingesting just remained in my blood and was not being absorbed into my tissues, muscles, etc! This problem went undetected for so many years that it created health consequences. As the only B12 that my body will readily absorb is the methyl kind, I now take mega doses of that sublingually on a daily basis. Although the PN is still a problem (but SLOWLY improving), I'm thrilled to report that my brain fog is completely GONE, my energy level has greatly increased and my anxiety level has decreased dramatically! I'm certainly not a physician and wouldn't presume to know if THIS was your issue as well, but maybe it wouldn't hurt to try and see if this particular supplement helps you feel better, too. If you want to give it a shot, Amazon sells it for a very reasonable price. It is called 'Jarrow Methyl B12/Methyl Folate'. The two have to be taken together for balance purposes. Also, if you do take these pills make sure you keep your potassium level up, as B12 greatly depletes potassium from your body. Hope I've kind of helped...all the best!
WOW yes you did help!! And I'm going to by it the minute I'm done responding. I just got a B12 shot at my allergist office. They ran a bunch of tests.... I got them to agree to a homocysteine, MMA, and Intrinsic factor antibody. But you are right. This burning is probably from not absorbing into my muscles and tissues. I thank you so much. You can never have too much B12 anyway <3
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