Return of severe pain after a decade
 

Hi, I have axonal polyneuropathy (diagnosed by NCV/EMG by two different neurologists). I was put on Lyrica and after a year of pretty bad pain and numbness, things improved and for over 10 years, I had relatively little disability (I couldn't walk a long way without bad pain afterwards, but otherwise fine).

Recently, I suffered from an episode of acute pancreatitis, and ended up diagnosed afterwards with gastroparesis. I had become severely anemic (iron deficiency), so I was told to try supplements or I'd need to do the infusions. I had found out I was also really low in Vit D. As such, I added supplements in iron (lactoferrin) and Vit D.

Since then, I've been having dramatically worse neuropathy pain. I'm pretty sure it's related to taking the iron, or possibly the Vit D.

Has anyone experienced this? I really want to go back to the way things were!

By B12 is supposedly fine: it's been tested several times between 500-600.

Thank you,
Eric

I'm not sure--
 

--that B12 level is optimal; many have reported having neural symptoms from B12 deficiency even into levels of around 700.

In most nations other than the US, the lower level of B12 adequacy is often 500-550; the standard US lab range of 200-900 or so is likely an artifact from days gone by before there was much more research into how common B12 malabsorption was, especially among older people.

It might not hurt to take some B12--1000mcg/day, in methylcobalamin rather cyanocobalamin form, just in case you are one of those people with methylation issues (that way the B12 has to jump through fewer chemical transformation hoops to get to the tissues).

Obviously, you should have your ferritin (not just serum iron) and Vitamin D3 levels checked regularly as well, given what happened.

Thank you so much for your response; the pain has gotten so bad recently. It's so frustrating since I thought I was most "cured" (also been dealing w/other health issues).

I'm really becoming convinced that the increased pain is related to the lactoferrin form of iron I started at right around the same time (they have checked ferritin multiple times, that's what clued them in that I was anemic: levels of 10-20).

Then again, the same issues that cause the low iron (gastroparesis, chronic gastritis, low acid due to nexium/PPI) could also cause B12 issues, I think. I'll have to consider that.

I've stopped the iron supplements and am focusing on trying to get them up naturally, and trying again to taper down the Nexium (I tapered once and it made me so sick I was vomiting). This time more slowly.

I went 10 years without this kind of major pain, and it started within a week of me starting to supplement iron (using lactoferrin). It just seems to coincidental to not be related. Of course, I also started Vit D supplements about a month before that.

B12 dropping
 

I checked, and my B12 was 572 pg/mL in March of 2020, and 532 as of last week.

So it does seem to be dropping, assuming it's not a test artifact.

I wish I knew what to do to go back to the way things were; I don't think my doctors do. Should I stop the supplements, or add B12? I just feel in my gut that the new neuropathy symptoms (shocking pain+some numbness in limbs) are related to the iron supplements.

Hard to know why your pain has returned.....could be the iron supps....too much iron intake is not a good thing I've heard for years.

My daughter had been anemic for probably 15 yrs give or take, her docs were stumped, she did so much and even had stomach surgery....and countless colonoscopies, and she has all the anemia reversed since using HGH homeopathic gel now for about 2 yrs...her docs and she are in shock, but happy. It's worth every penny we spend on this homeopathic gel. I use it too and I'm 82 and live with a damaged body from hip replacement and advancing OA and have had my share of neuropathy.

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. :Tip-Hat:

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..