Newly diagnosed.. anemia goes full circle.

[Milescircus]

I went for genetics testing and things went full circle... on examination and full Hx and Px, Hx having severe RLS and lifetime of fatigue and anemia, and Autoimmune Thyroiditis, Iron Deficiency Anemia was suspected and labs were drawn. I just finished my 5th Iron Infusion but had a colonoscopy scheduled at the same time so I already had a GI doctor. I had seen the Onogist/Hematologist that drew the labs. When the GI Dr. found out about the Anemia she had to do an EGD do rule out a bleed because of the Anemia. One of those biopsies showed Intestinal Metaplasia. So I had to have another EGD for Gastric Mapping . The biopsies for the 2nd EGD showed Atropic autoimmune Gastritis which I read hinders the ability of B12 absorption. It has also been linked with autoimmune thyroiditis and anemia and I have both which I find kind of oddly confusing and amazing at the same time because I read that this is a precancerous condition and had I not found out about the iron deficient anemia and had to have the EGD I wouldn’t know about this. Does anyone know anything about this?

[fbirder]

Yes, I know a lot about it.

You have Autoimmune Metaplastic Gastric Atrophy (AMGA). Your immune system is attacking a part of your stomach called Gastric Parietal Cells (GPCs).

GPCs have two jobs:

They make something called Intrinsic Factor (IF). This is a protein that binds to Vitamin B12. It is required to escort the B12 molecule from the gut to the bloodstream. Without IF you will have Pernicious Anaemia and be deficient in B12, requiring regular injections for life.

GPCs also make hydrochloride acid, HCl, which has many roles. It helps liberate iron from the proteins it is bound to in food and it helps the liberated iron get into solution, where it needs to be to get absorbed.

With no HCl in the stomach (called achlorhydria) it is much more difficult to absorb the iron. Supplements in an easily dissolvable form (iron fumarate or iron bisglycinate) can help keep your levels up.

HCl is also responsible to regulating the release of a hormone called gastrin. When a normal person eats food it triggers the release of gastrin. The hormone tells the GPCs to make HCl, to help digest the food. As the acid is secreted into the stomach the pH goes down. At a certain pH the stomach switches off gastrin production. It’s a classic feedback loop.

But if you have achlorhydria there is no production of acid, so the pH stays high and gastrin production doesn’t get switched off. You have high levels of the hormone in your blood - called hypergastrinaemia.

One effect of hypergastrinaemia is that it stimulates the growth of stomach cells (presumable to make more GPCs). But the GPCs get killed off, leaving the wrong sort of cells behind, this is the ‘Metaplastic’ bit of AMGA.

Now, here’s the bit that you may be most worried about. Sometimes the extra cell growth can result in something called gastric carcinoids (nowadays known as Neuroendocrine Tumours, or NETs). These are what you’ve heard may be precancerous.

Two bits of good news.

1. Your biopsy samples should have spotted any NETs if they were present. They may like to do another gastroscopy, with more biopsies just to be sure.

2. If you do have NETs they’re not too worrying. My gastroenterologist, when he found mine, described them as ‘indolent’. My treatment is an annual biopsy. When I see him later this month I suspect he might switch to every three years as they’ve not changed in the last few years.

When I found I had NETs I did a lot of research (I’m a retired analytical chemist) and found that the 5 year survival rates for people my age with Gastric NETs was slightly better than for the general population. I guess we have more regular checkups.

Phew! That’s a lot to take in. Go through it slowly and feel free to ask any questions.

[Milescircus in reply to fbirder]

Thank you for the information.I have a nursing background and I think it can be helpful and/or hindering. My follow up is June 20th, I have a previously scheduled genetics appt tomorrow, I have A LOT of cancer, especially on the paternal side with breast,2 lung, 2 pancreatic, and 2 stomach just up to my great grandfather. So of course I do worry some about that. Same day I see the Hem/Onc Dr for follow up labs from the Iron transfusions, iron deficiency Anemia. He had changed the iron I had been taking forever to a different type last week when labs were drawn. I have had SEVERE RLS since I was 14 and on more medicine than I care to mention just to be able to sleep but can’t sleep and completely so tired all day I can’t stand myself. I’m 45 and can’t ride in a car without closing my eyes and can’t sit in bed and text without falling asleep holding the phone mid text.. my husband likes to take pictures of this to share. My kids will walk by and say mom are you asleep? And I am because I can’t hold my eyes open. RLS is known to be caused by a brain iron deficiency but could this be somehow related too. I sometimes think I’m crazy and think I could sleep my life away. Other than gastric mapping or Gastroscopy and a yearly or possibly changing biopsy was there any other treatment? I guess I will find out tomorrow if I will continue with Iron infusions or B12 injections. Is yours hereditary? And do you have any other autoimmune disorders? Like thyroid problems? I was diagnosed hypo about 13 years ago but autoimmune with a multinodular thyroid about 3 years ago and I’m on a high dose of levothyroxine. Up to 200mcg now. With all the same symptoms. As I read about this and not absorbing b12 I’m also reading some about it absorbing levothyroxine or other thyroid replacement drugs. With a medical background just enough knowledge or know how to look things up to be a pain in the butt😐thank you for your time and your info!! I’m just looking for all the info I can find.

[fbirder in reply to Milescircus]

I have a maternal aunt that has PA, but the rest of the family are OK. An neither I, nor any member of my family, have any other autoimmune problems. I guess I’m just lucky.

No other treatment for the NETs as they’re almost certainly going to sit there quietly. Some researchers are looking at drugs that inhibit the release of gastrin in the hope that they will help prevent their formation.

When first diagnosed I had a CT scan, a gamma ray scan and a PET/MRI scan to see if they’d spread. But I got the impression that was because it was the first case he’d seen.

[Milescircus in reply to fbirder]

So at my follow up to my last EGD my GI doctor scheduled a pill cam endoscopy to see the entire GI tract. I suppose there are some middle areas too that the colonoscopy and EGD can miss. So I have that in a few days. She said repeat EGD in 1 year? It may have been 3..I haven’t been for my follow up genetics appt yet but anxious to Know those results. I only know my BRCA 1 & BRCA 2 showed no abnormalities from a previous visit, or the visit that brought all this to light. My Hem/Onc dr wants to continue Iron transfusions and B12 shots every month for 6 months. I don’t feel like I have any more energy than before, my B12, Ferritin, Iron, and TIBC we’re all still low. I did realize that my mother has been getting B12 injections for years as well but has never had an EGD or any test to know if she also has Atrophic Autoimmune Gastritis. That may be the hereditary piece but my paternal grandfather had stomach cancer so maybe he is the hereditary piece. I don’t feel horrible just no energy. I read over your initial reply again. Thanks for that. Really helpful in understanding it🙂

[fbirder in reply to Milescircus]

You description of ‘no energy’ matches me. I inject B12 twice a week and I’m a lot better than I was a few years back. But anything strenuous (like going on the ‘People’s Vote March’ this past weekend) just wipes me out for a full day afterwards. I used to be able to walk miles and miles, carrying heavy camera gear with no problem. Now just walking more than 3 km has me needing a lie-down.

There is a group of people with PA who need more frequent injections. Nobody knows why, but there’s been recent news that researchers might be close to getting a clue as to the cause.

Have you had your folate measured?

[Milescircus in reply to fbirder]

I do think so? But can’t remember for sure. I’m traveling now so I don’t have my stuff with me but I do think he drew it with those other labs. I know every test was low. Also something super weird happened the other day when I was driving. I flew to Arkansas to get my oldest son and his family and we started off on our 17 hour drive to VA and I drove for about 20 min and finally told them I needed to pull over, something wasn’t right and I couldn’t keep driving. Most bizarre feeling ever. Like my visual field was disturbed somehow? I have no real words that make sense to describe it other than there was like a halo/ring in my visual field? Not like def ate even, just , well I don’t even know how to describe it. Wasn’t right, almost felt like I was looking back at myself.. and that alone sounds nuts but I have no way to describe it. I couldn’t keep driving. I told the GI dr when I went for follow up and she said I may have been having a mini-stroke! She asked the length of time I had it and I said after about 4 hours I felt better ( and didn’t drive) then I remembered there were a couple days before I left where my left hand and fingers were numb and tingly. Only to about my palm or past and didn’t hurt so I attributed it to topamax which I take. It sometimes causes some tingling but usually in my feet. Have you ever heard of AMGA or b12 deficiency causing visual problems? It was a scary/bizarre thing. Maybe I just need to have a new eye exam.

[shaylynn in reply to Milescircus]

Hello, I searched metaplasia and your post came up. I was diagnosed with this and an struggling to heal my gastritis right now. Just curious if you had any gastritis symptoms. Also, I did have blurred vision pretty bad when I was first diagnosed but my injections cleared that up. Just get dizzy sometimes still and I also had experienced numbness and tingling pretty bad. Still have that but to a very much more mild degree. I have been SI every other day for six weeks now.

[Milescircus in reply to shaylynn]

Hi Shaylynn. I have absolutely no symptoms like heartburn or pain of any sort. I just can’t absorb iron or B12 and seems like nothing hardly fully digests. I suppose bloating and constipation are my symptoms. They did the breath test for h pylori which sometimes can be the cause but I told her I’ve nevr had what I thought was heartburn ever in my life. The breath test was negative. We’re you tested for h pylori? Because of this I had iron transfusions and b12 shots for 9 months. My levels were just recently up enough that he had me stop and come back for labs in three months. I could never physically tell either one of them helped me feel better. But the numbers are up so they worked. I am always tired, score a 19 on the sleepiness scale at the neurologist. I’d swear I have narcolepsy but don’t. I was diagnosed with an outflow murmur a couple weeks ago, he said this can be from anemia. Are you taking regular iron and b12? I was told neither would be effective because my stomach wasn’t absorbing them anyway. He has me taking 2 flintstones twice daily as they have a different form of iron more easily absorbed and sublingual b12. The one with the ingredient methocobalmin seems to work a little better for me. You mentioned feeling dizzy as well. I actually passed out in the airport just after thanksgiving and because I have passed out before and the problem with my vision on that drive, because one of the drs said that along with other things could have been a mini stroke. she’s sending me to cardiology. I actually go tomorrow. When I was diagnosed first with metaplasia they had me do another EGD and do biopsies of the different zones of the stomach, and those biopsieswere a part of “stomach mapping”that I’ll do again in 3 years, unless there are changes. Those biopsies showed autoimmune atrophic gastritis which is the reason I suppose for the pernicious anemia and the b12 deficiency. I hope any of this makes sense or is helpful! I hope you feel better!

[Milescircus in reply to shaylynn]

Also the gastritis is an autoimmune disorder. Likely if you have one you’ll have more... I have had Hashimoto’s thyroiditis for several years, and possible celiac or IBS. Celiac is another autoimmune disorder. In all my reading, I read that they’re related and that possibly I haven’t been absorbing the thyroid medicine either.How’s your thyroid? I have also had severe Restless Leg Syndrome since I was about 14. They think or may now know that it’s caused by a brain iron deficiency. So I thought the iron transfusions and b12 shots would help with that but have not. I take a lot of medicine at night just to be able to lie down. Point of that is when I searched a list of “AutoimmuneDisorders” Restless LegSyndrome pops up. So that’s at least 3, possibly 4 Autoimmune Disorders for me. Hope this helps!

[shaylynn in reply to Milescircus]

Thank you for all this info! I have been tested for h. pylori and it came back negative.

[Milescircus in reply to shaylynn]

Have you had a capsule endoscopy? They sit we have up to 15 de of small intestine that can’t be seen via the other routes. I did that, mine was normal. Have you tried changing what you eat? Maybe try the Low Fodmap diet”

[Milescircus in reply to Milescircus]

Meant say.. and 15ft of

[Lyynn123 in reply to Milescircus]

Yes I am changing my diet. I am reading about the autoimmune diet now.