PA and stomach pain?

[Wowo23]

Hi all. I was diagnosed with PA about 5 mos ago. I take weekly shots. My b12 was 92 and is now 600. My doc and I think this is a good level to maintain. Anyway, it seems my stomach pain is worse. I need to backtrack here. 6 years ago was pretty healthy. Pain in my right foot showed a bone tumor. Fast forward 6 years and 12 surgeries, had to have my right leg amputated because of tumors and bone infection. Over these years, I have felt my health declining. Leg now fixed and getting ready for prosthetic, I felt all low b12 symptoms, but it was oncologist that found my low b12 and very high instrinic factor. Some symptoms have eased ,but my stomach is a mess. My bloodwork has shown high mcv, high mch, low rbc, low D3 and now MYHFR gene mutation with 2 separate chromosomes #'s and elevated lymp absolute. My doc ordered a CT of stomach and has referred me to a hematologist/oncologist at a chemo infusion clinic in SF. She said a smear would show if lymps are active, it's infection, but if not, it's either lymphoma or leukemia. Has anyone delt with PA and such serious stomach pains/issues?

[Wowo23]

I also forgot to mention that I've lost lots of weight(was 130, now 98) and wake up drenched in sweat almost every morning.

[Gambit62 Administrator]

PA is an auto-immune disorder that attacks the gut in various ways that result in B12 deficiency but can also result in other vitamin and mineral deficiencies. MTHFR actually affects folate more than it does folate and is unlikely to be a factor in relation to B12 but may mean that you need slightly higher folate levels. Some chemotheorapy can also adversely affect folate as well. B12 and folate are used together so it could complicate things.

PA does put you at higher risk of certain types of stomach cancer.

The high MCV and MCH are signs of macrocytosis - a classic symptom of B12 and folate deficiency.

[Wowo23 in reply to Gambit62]

Gambit62. Thank you for your reply. My b12 levels are great now and folate seems ok. Could I have H Pylori or ulcer? I'd rather look at any benign possibilities than the alternative

[Gambit62 Administrator in reply to Wowo23]

having shown up as having IFA you have Pernicious anaemia which means your stomach problems are much more likely to be down to auto-immune gastritis than h Pylori infection.

your B12 levels are only okay if your symptoms are under control - levels post loading shots don't really mean a lot unless they come back low. Your levels after an injection will be astronomic so it would be more correct to say that they have now fallen to 600 than say that you have stabilised at 600 - because your levels will continue to fall, without further injections, if you have an absorption problem. Normal range really doesn't apply after treatment with B12 injections.

Personally I would advise that you follow up on the other diagnostic tools. If it is something nasty then it is better to catch it early as treatments tend to be much more effective if they catch problems in early stages.

[Wowo23 in reply to Gambit62]

Gambit62. Thank you

[Gambit62 Administrator in reply to Gambit62]

please note - higher risk is only slightly higher - something like 0.1-0.5%

ncbi.nlm.nih.gov/pmc/articl...

[fbirder]

You have Autoimmune Metaplastic Gastric Atrophy. Your immune system attacks the Gastric Parietal Cells. This has three relevant effects.

1. The GPCs are responsible for making intrinsic factor. This is needed to get B12 from the gut into the blood. You have little/no IF which is why you have low B12.

2. They GPCs are also responsible for making hydrochloric acid (HCl). You're not making enough HCl (achlorhydria) which causes symptoms very similar to having too much acid - including stomach pain.

Achlorhydria means that you don't break down proteins very well. The undigested protein can get to the large intestine, where the bacteria have a big party on the unexpected gift. That can result in bloating and diarrhoea.

3. When you eat food the stomach tells your body to release gastrin, a hormone that does many things involved in digestion. Gastrin production is stopped when the stomach pH drops, due to acid secretion. That means people with AMGA will have achlorhydria which can cause high gastrin (hypergastrinaemia).

Gastrin can also stimulate the production of new gastric cells. Hypergastrinaemia increase this stimulus which can result in the stomach producing the wrong types of cells (that's the Metaplastic bit of AMGA). Sometimes those wrong cells can develop into Neuroendocrine Tumours (NETs, or gastric carcinoids).

NETs are pretty innocuous beasties. My treatment for them is to have a gastroscopy once a year to check that they're still having a kip. I'm off for my third next week and I'm expecting to be told we'll switch to every two years.

The 5-year survival rate for people of my age with NETs is slightly better than for those without NETs, presumably because we have our health monitored more thoroughly than average.

[Wowo23 in reply to fbirder]

Border. Thank you so much for the info. Sounds pretty serious. I have to say I'm in constant pain. It's effecting my life.

[loomis]

I have yet to be diagnosed with PA but stomach pains is something I have always experienced, had a terrible spell of stomach pain in mid 2016 which resulted in me having to eat soft foods for a few weeks. I typically have low level stomach pain once a week now. Weight never increased above 53kg and I also woke up drenched in sweat many times.

Symptoms went away for a while after I was given B12 shots earlier this year so weight shot up and stomach pain dissipated. I suspect I have PA but wont find out till next week but yea, stomach pain has been an issue with me so far.