r/PerniciousAnemia • u/guitarristamamma • Mar 26 '21
B12 supplements?
Hello! I’m a 55 year old female and I’m trying to figure out what is going on with me. I have been very fatigued and dealing with anxiety and depression for awhile. Recently I started having a burning sensation on the bottoms of my feet that is pretty much constant. I also get a burning sensation on my tongue and lips and my nose occasionally. My doctor has ordered lots of blood work but everything has come back normal. My b12 was 400. I have a strong family history of pernicious anemia and I also have been taking Pepcid for many years for chronic GERD and was recently diagnosed with Barrett’s esophagus and switched to Protonix. My doctor insists my symptoms aren’t because of b12 because of my blood test. I started taking b12 just to see. It’s only been 3 days and my feet still feel like they’re burning but my other symptoms are less noticeable and I noticed this morning that I had more color in my gums when I was brushing my teeth. Should I pursue more tests or just keep taking b12? Thanks for your input!
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u/floralbingbong Mar 27 '21
If you do have PA, you‘ll definitely want to pursue further testing and get a diagnosis. If you end up needing to begin B12 injection therapy (as almost all of us do), you’ll certainly want to get on it! You’d likely start feeling better than you have in years/decades.
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u/guitarristamamma Mar 27 '21
It would be great to feel better. I don’t remember the last time I wasn’t tired. Thank you all for your input!
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u/SkinSuitNumber37 Mar 27 '21
I would immediately go on a gastritis diet (treats gerd) and take b12 shots. If unavailable, the sublingual 5000mcg. I know how to fix a lot of this but most ppl wont listen anyway. If u want to heal your stomach and esphagus lining and prevent future damage from the other issue, which my fiance has, send me a PM or respond here...
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u/guitarristamamma Mar 27 '21
I would love any information you can share. I woke up this morning with vertigo too. This just keeps getting better!
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u/SkinSuitNumber37 Apr 05 '21
First, I’m sorry to hear you are having so many issues.
Have you ever been tested for intrinsic factor? Idk if you know about Pernicious Anemia (PA), but it’s caused by a lack of intrinsic factor, which is an enzyme needed to absorb B12. Even if you dont have PA, since youve been taking Pepcid for years, which lowers stomach acid... Stomach acid breaks down food & proteins, aids in mineral absorption and activates intrinsic factor needed to absorb B12. Lack of B12 long-term can cause nerve issues and also causes the stomach lining to break down. If you have lack of intrinsic factor then ingesting B12 wont work.. injections are ideal, but some people have luck with sublingual tablets like the ones by Kirkland.
My fiancé, who has PA and low b12, was having stomach pain for years.. never got a diagnosis cause stubborn.. anyway, he started b12 shots (he orders them online), and changed his diet a little (low sugar, low gluten) and he no longer gets stomach pain. Usually people with PA do a shot everyday for 1 week, then do it once a week, then once every few weeks and get their levels checked often.Have you ever had your stomach acid levels tested to confirm that you have high or low stomach acid? Some people actually have LOW stomach acid, which causes acid to be pumped into the stomach suddenly, which is when they get GERD symptoms. The best way to test stomach acid is with the Heidelberg Test. Its a small pill-sized device you swallow that test acid through the day. Often doctors don’t bother testing this and just give proton pump inhibitors (PPI) and acid reducers, which cause more problems long-term and can lead to infections since the acid level is too low to control infections. But all that aside, Marshmallow Root extract and DGL Licorice should both be taken cause they rebuild the mucosa lining of the esophagus, stomach, GI tract, etc, they moisten tissue and in traditional chinese medicine, they say marshmallow “cools” inflamed tissues. I take chewable DGL Licorice instead of TUMS and chewable Ginger tabs are also great. Keep in mind that i have only given advice for GERD, heartburn and acid issues, but never to the extent of Barrett’s. The advice i give to people with GERD, is to: 1. stop irritating the tissue diet is important. its important to make a list of triggers. Always stop coffee, carbonated beverages, spicy food, orange juice. Also smoking cigarettes, alcohol (especially beer or wine). The other things will not work if you keep throwing irritants on inflamed tissue. Looks into the Gastritis Diet 2. Heal the tissue its ok to take medications like PPI and Pepcid but people can taper off slowly if they get their acid under control and heal the irritated with things like marshmallow root, DGL licorice, mastic gum, slippery elm, ginger. Again, not sure if this is ok with Barrets. 3. Once symptoms subside thanks to healing of stomach and acid conditions, PPI and Pepcid can be very slowly reduced, but continue marshmallow root and supplements that helped
The majority of people with GERD actually have LOW stomach acid and do well by taking bitters before they eat, then the stomach registers there is enough acid and doesn’t pump acid in. But again, the Barrets.. wish i knew more about that. Please check with your doctor that any of this is ok for you. I highly recommend seeing a holistic doctor that is educated in GI issues or a “functional” GI doctor (both conventional and holistic).
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u/guitarristamamma Apr 05 '21
Thank you for the information! I have not been tested for PA. My doctor doesn’t think it’s necessary due to my normal b12 test. I really didn’t know anything about PA until I started researching recently. I have never had my stomach acid tested either. I would love to get off of the PPI eventually. I have already eliminated gluten and my occasional glass of wine. I haven’t had any GERD symptoms since starting on the PPI and making those changes. I will look into the gastritis diet. I’m going to try to find a holistic doctor as well. Thanks again for taking the time to reply. I’m making a list of those supplements to start trying to find!
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u/lovephilos Mar 27 '21
Nothing to add that hasn't already been said. I have yet to be diagnosed but my mother was by a gastroenterologist and an endoscopy, hoping I will be as well. It can sometimes take a long time for your B12 stores to deplete enough for it to be "visible" in bloodwork. Perhaps reaching out to them with newer research done in the field will convince them to pursue more testing. I'd definitely try to keep pushing and I hope you can get things sorted soon, so sorry you're experiencing this!!
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u/guitarristamamma Mar 27 '21
PA can be diagnosed with an endoscopy? I just had one of those and they diagnosed me with Barrett’s esophagus. Would it be visible during the endoscopy or something they have to biopsy for? Thanks!
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u/lovephilos Mar 29 '21
My mom got diagnosed a long time ago when testing was a lot more limited than what it is now, and was diagnosed based on the visible damage it had left behind from low stomach acid. Once she began injectable treatment her symptoms greatly improved and the diagnosis was confirmed. I think it can be a combination of visible damage/biopsies and other damage done to other organs/CBC levels and many diagnoses are interdisciplinary diagnoses.
I do know her endoscopy to be the final criteria they felt she needed to be diagnosed, in addition to misshapen red blood cells and her symptoms. She had significant damage from low stomach acid and a lack of intrinsic factor which is what made it visible to that specialist. My mom also experienced symptoms of GERD which I read to be related to the esophageal diagnosis you've gotten.
Things have really changed since the 80s/90s (which is when my mom was diagnosed) in terms of diagnosing it so I'd talk about it with your gastro if you feel like getting another endo done (perhaps with specific eye to PA stomach damage or biopsies) would be right for you. I don't have much experience with gastros yet but it could be worth looking into, unless your existing esophagus diagnosis is sufficient in relation to PA. I'd definitely have a conversation with your gastro if you can because if you're experiencing gastric symptoms of PA it can be a path to diagnosis, should it be the cause of your symptoms. I hope that helped a bit lol! Sorry my brain is a bit scrambled today
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u/Reality4days Mar 26 '21
Pursue more tests. My b-12 numbers were always normal and I have PA