Hello,

I really hate to hear you are experiencing increased pain. I don't know about the iron supplements. I also have low iron too. I don't take anything to help as far as vitamins. But, I do get a iron infusion that helps. I know you mentioned taking Nexium and it could be that your body isn't absorbing as much of the vitamins as is needed. I know many physicians do order people to get a iron infusion instead because of them having absorption problems related to their GI. It may be worth asking about.

Best wishes,

Diamind Tiger<3

Yeah, I've heard taking iron can be quite damaging if your levels are high, but mine are very low (~13 ferritin and high transferrin). I have iron deficiency anemia.

So in theory, iron supplements should only help, but it does seem like they've been hurting.

Then again, I've got to get the iron up, since I'm experiencing problems likely linked to the anemia (cold hands, tingling that's different from neuropathy, extreme exhaustion, etc).

I'm worried about the infusions. If simple iron supplements cause such a massive flare-up, what would infusions do?

I feel like my only issue is to try to get off the nexium again, and trying to up my levels naturally via things like organ meat (I'm mostly just eat fish meat, so this will be hard). I've already tried to taper off once of the Nexium a year ago, because I knew it wasn't good for me even before the anemia, but ended up getting back on because of the vomiting.

Also, evidently the gastroparesis can cause these vitamin deficiencies.

My neuro is also sending me to a university neuro center to see if I possibly have serious autonomic neuropathy due to the bradycardia, gastroparesis, and orthostatic hypotension.

I just feel like I'm in a vicious cycle I can't climb out of, no matter how hard I struggle. I've lost tons of weight. Ever since the first pancreatitis attack several years ago (and then gallbladder removed), I've struggled. But I'm not even 50 yet. I've got kids to take care of.

Hi Eric_S

I have a family member with Crohn's Disease who has anemia - but he absolutely cannot tolerate any iron supplement he has ever tried, not even in a multivitamin/mineral supp.
So he simply eats as much iron rich food as he can, and over recent years his anemia has stabilized...he still tests a little low for iron but not such that his doctor feels is any cause for concern.

You will find a list of foods that are good sources of iron in this article from Mayo Clinic
Iron deficiency anemia - Symptoms and causes - Mayo Clinic

Welcome Eric_S.

OP: I know my B12 runs high on all my labs and has for years...well over 1000 but I'm told by doc it's fine that it does...I have been taking 1000mcg B12 lozenge every day just about, for years. I don't know how I'd feel without it being where it is..

So no one else has had increased neuropathy after supplementing with Vitamin D or iron?

Maybe it's something else. It's gotten even worse now, quite bad. It's a slightly different kind of neuropathy pain than I've had the last 15 years.

Hey Eric,

Sorry to hear of your continuing health issues. You've had it rough. As a fellow PN sufferer, these are my thoughts.

I think you may be coming at this from the wrong angle and that its not Iron Supplements and vitamin D causing your Health issues, its the anaemia itself. Sometimes the onset of neuropathy symptoms can be delayed. Perhaps the delayed onset and your ingestion of supplements coincided and you may have drawn the wrong conclusions? Nerve supply and blood supply are not independent of each other. Anaemia results in reduced transport of oxygen via haemoglobin in blood vessels to the peripheral nerves. This may and I stress may be the cause of your new symptoms. See the study below for this possible mechanism.

https://www.bibliomed.org/mnsfulltex...pdf?1606057781

Below is a good summary of how to boost iron levels.

Boosting iron absorption: A guide to for the science-minded

Most iron absorption occurs in the upper part of the intestine, the duodenum. Perhaps you need to pay attention to your diet and your microbiome.

Low Vitamin D levels are associated with poor health.


Best wishes