Heart, B12, Deficiency, Pernicious Anemia, EGD Test, Tissue Samples, family risk

[HoneyBeeGal]

In the past I had an EGD, but NO tissue samples were taken. I have had B12 deficiency and prescription B12 shots for about 20 years. (I was falling, once flew into a summersault in the middle of a paved road, ankles were giving out, I was bumping into walls and super fatigued, etc.) When I was diagnosed with low B12, I had a score of around 220 (reference range 200-1000) and high homocysteine. My homocysteine normalized after the shots. No doctor wanted to confirm wether it was just a deficiency versus pernicious anemia. My paternal great-grandma had gastritis and my paternal grandfather had monthly B12 shots. In the past I used BC pills, Proton Pump Inhibitors and antacids, so doctors think that those meds could have caused malabsorption. I also was iron anemic for around 5 years, cause unknown, and I eat meat often and tested negative for celiac. I still always have very low Ferratin. At times I have had high RBC distribution width, but not currently. I run deficient to low D vitamin despite vitamin D supplements with K2. One past doctor wrote B12 deficiency with Proteinuria, but over time that label was dropped. If I lengthen time between shots, my B12 levels drop quickly on blood tests in spite of consumption of B12 rich foods and B12 fortified foods.

I am due for an EGD and colonoscopy and wanted to know if there are specific tissue samples I can request they take and which specific sites they should take them from to see if they can diagnose the cause of B12 deficiency or anything else going on at a cellular level. In the U.S., the test is usually allowed only every 5 years. I also want to know if the doctor prescribing the test has to order specific tissue biopsies or if it is left up to the discretion of the doctor performing the procedure.

I have been given B12 vials for 1 to 4 shots per month, currently at two shots per month. But I notice that 7-10 days after a shot I have increased foot pain and tachycardia. I have plantar fasciitis / osteoarthritis, but doctors also say I have neuropathy. I also have other diagnosed health issues, including hypothyroid, fibromyalgia, etc. I have read that many people with hypothyroidism and Fibro have low B12, vitamin D, and low Ferratin. I also saw that an EGD can involve the heart. I was curious if any of you have been told anything additional about your heart via EGD.

My doctor referred me to a hematologist, but she said if my B12 tests were fine, she would not see me.

(Also, An older first degree relative recently fell over to his side in front of me and had obvious balance issues just this summer. His doctor has him only on oral over the counter B12 pills, and he claims he is much better but I tried to talk him into the shots as I was worried about him having permanent nerve/neurological damage.)

[Nackapan]

Sounds lijd yoh need B12 injections closer together before symptoms return 3 generations of my family need B12 injections.

I also struggle to stay 'in range ' with vit D despite taking daily supplements

[HoneyBeeGal in reply to Nackapan]

I made the mistake of letting my doctor test my B12 on blood work soon after an injection, so the levels were on the higher end. As a result, the number of B12 vials reduced from four to two per month.

[Nackapan in reply to HoneyBeeGal]

That's awful. Just point out of course leveks will be high after a b12 I jection.Whole point !!

I Pointed this out as b12 was on the same test as folate wanted .

Gp just grinned !!

[Hockey_player]

With neuropathy, the recommended frequency for B12 injections is at least every other day until your symptoms subside. Then for a maintenance dose, you want to space them out closely enough so that you do not have any symptoms. I get symptoms back after 3 weeks so I maintain at once per week. I think they can find indications of being coeliac from a colonoscopy but not specifically pernicious anemia. There is no really definitive test for that, but based on your horrible symptoms, it seems likely. Also based on your needing shots more than once per week.

[HoneyBeeGal in reply to Hockey_player]

Thanks for your reply. I was reduced from four B12 vials prescribed per month down to two. I will see if I can get the dosage increased. Everyone on here knows what an uphill battle that can be. I still had a script for four vials per month from my laid off doctor, but that just expired. There are some diseases in which B12 can run high, and I think that makes doctors wary of having B12 levels get too high, even though one situation really has nothing to do with the other; having high levels due to injections.

[Hockey_player in reply to HoneyBeeGal]

If someone is having injections, then it is normal for B12 to be high. For someone without supplementation, high B12 can be a sign of something serious. You may have to order from Germany like some of the people on this forum to get enough B12.

[HoneyBeeGal]

Hockey_Player, you are correct. It looked high because it was recently injected. But it seems like B12 is some mystical arena of medicine to most doctors. I had the online pharmacist try to tell me to just switch to over the counter. After I explained my previous symptoms of deficiency and the gastrointestinal distress on both ends from over-the-counter B vitamins, she relented. I told her that I bought several reputable brands of B12 methylcobalamin with the same results. I added that these brands gave me no issues regarding other vitamins and minerals. I do not have luck with oral B vitamins. I might just go to my former doctor again too as he re-established a practice about half a year after being laid off.