Ongoing iron deficiency cause?
November 19, 2017 4:35 PM   Subscribe

I've had iron deficiency for many years (not anemia apparently - I have a normal red blood cell count, although they are small) and have lately been going through All Of The Tests to find out why, with no answers yet. Anything else I should be thinking about or asking my doctors about?

At-home poop test showed no bleeding, endoscopy and colonoscopy came back with nothing showing a cause for iron deficiency. Celiac blood test was negative. Next week I'm having a capsule endoscopy done to check out my small intestine.

Other info: I eat pretty well, mostly paleo-ish, have really light (almost nonexistent) periods and a big fibroid that's non-symptomatic, GERD, and have been a regular Prilosec user for over ten years, although I'd weaned to half a dose until I got put back on a full dose for two months to deal with mild esophagitis they found during the endoscopy. (I feel like the Prilosec could be partially to blame but all my docs say Nope! It doesn't do that!)

Anyway, do you know about iron deficiency? I have a suspicion that the capsule endoscopy may also turn up nothing and so, then what? My GI doc says there's usually a reason why someone would have low iron. Is there anything else I should be thinking about as a wanting-to-be-helpful patient? Also, I'm balancing between feeling curious about all the tests and anxious about trying to find out what's wrong with me, so there's that layer too. Thanks everyone!
posted by fleecy socks to Health & Fitness (16 answers total) 4 users marked this as a favorite
AFAIK, big fibroids (even asymptomatic) are usually dealt with surgically - precisely because they put a draw on the iron/blood supply in the body, even if you aren't a bleeder yet and I'm surprised they (your docs) haven't pushed for removal yet. However, since you're also eating paleo-ish, depending on how severely you are following the diet, you can potentially not get enough iron in your diet (I know!) if you aren't eating a variety of iron-rich sources, particularly in the leafy green section. Take a look at your weekly meal prep and check your macro and micro nutrients. See if a clue lies there.

That you're having tests and your docs are curious bodes well. Hopefully they find something out soon!
posted by missh at 5:10 PM on November 19, 2017 [1 favorite]

Have you had children? I recently interviewed an expert about why so many women have iron deficiency, and she told me that children are remarkably efficient at sucking iron out of their moms. The effects can last for years (I don't want to self-link but it was in the Washington Post; you can google my name [in profile] and find it pretty easily). I came away from the interview with the impression that for many women, the the answer is just "it's your body."
posted by mynameisluka at 5:10 PM on November 19, 2017

Nope, no kids. The fibroid is also a new discovery and the OBGYN said it could just stay if it's not causing problems but my GI doc was wondering if it is sucking my iron just by existing...
posted by fleecy socks at 5:21 PM on November 19, 2017

I see tests but what bloodwork did you have? If you have any Mediterranean ancestry it might be worth looking for the thalassemias.
posted by cobaltnine at 6:01 PM on November 19, 2017

I'm surprised your doctors don't think Prilosec could have anything to do with it.

Because Prilosec prevents the parietal cells in glands in your stomach from producing acid, but it also seems to be toxic to those glands as well:
Omeprazole acts by selectively oxidizing thiol targets in the gastric proton pump, but it also appears to be toxic to the gastric mucosa. ...
And those glands also produce a substance (Castle's intrinsic factor) which is essential for the absorption of vitamin B12 from food, and B12 in turn is necessary for iron metabolism and the production of healthy red blood cells.

People who lose those parietal cells altogether develop a formerly inevitably fatal anemia (pernicious anemia) which can now be treated with B12 injections.

But you can also treat PA with very high oral doses of B12, 10,000 micrograms a day for a week every few weeks, as I do.

And if I were you I'd try taking that much B12 just to see if it would help, as long as my doctors didn't object.

By the way, when I was recovering from my initial bout of PA, my hematologist remarked that my red blood cells passed through a stage where they were unusually small.
posted by jamjam at 6:03 PM on November 19, 2017 [2 favorites]

I'm surprised your doctors don't think Prilosec could have anything to do with it.

I also have treatment-resistant iron deficiency and GERD, but my iron deficiency diagnosis predates the GERD diagnosis, so I was iron deficient before I started taking any medication (it's mostly silent reflux).

Obviously the prilosec/B12 connection could still be correct for the OP, and is doubtless worth exploring. I'm just saying GERD and treatment-resistant iron deficiency can also be co-morbid for other reasons (chance, or some third, underlying factor). I'm going to be seeing a hematologist in the next few weeks so I'll circle back if I hear anything helpful.
posted by mrmurbles at 6:28 PM on November 19, 2017

a) Crohn's disease can affect the absorption of minerals from food;

b) so can Coeliac disease;

c) very high levels of exercise can cause iron deficiency anemia;

d) have you been checked for a stomach ulcer? that can also cause anemia.

Source: all things I was told by the Dr when I had to have an intravenous iron infusion for anemia.
posted by Murderbot at 7:11 PM on November 19, 2017

Without other test results, it's hard to say what it could be. You've told us that your red blood cells are small, which suggests this is a chronic issue.

Any family history of colon cancer, polyps, IBD, or other autoimmune diseases should be brought up to the doctor. Other things to consider include going over your diet with your doctor (iron deficiency is not uncommon in women who eat specific diets like paleo) and thinking about your stress levels, both of which can have a large effect on iron stores. Thyroid function can also sometimes affect iron stores, but I would expect you to have other symptoms by now if that really were the culprit.
posted by gemutlichkeit at 7:16 PM on November 19, 2017

That's interesting, mrmurbles, and I didn't see this before or I would have linked it, but:
GERD Meds Up Risk of B12 Deficiency
Patients taking prescription anti-reflux medications had significantly higher odds of a vitamin B12 deficiency, researchers found.
However I think there's good reason to think that GERD itself might lead to B12 deficiency, and by a very similar mechanism that I'm postulating for proton pump inhibitors, because pernicious anemia is an autoimmune disease, and one of the things you'd think could provoke an attack on parietal cells by the immune system is production of too much acid, and if that attack goes too far, you get PA.
posted by jamjam at 7:16 PM on November 19, 2017

YANMD: I found my tests if y'all are interested. These make no sense to me, really.

Iron is 30ug/Dl
TIBC is 352
Saturation is 9%
Ferritin is 11 ng/mL
WBC is 9 K/uL
RBC is 5.31 10*6
Hemoglobin is 12.5 GM/DL
Hematocrit is 39
MCV is 73
MCH is 24
MCHC is 32
RDW is 17.4
Platelet count is 228
B12 was last checked in 2013 and was normal (480)

No ulcer, not sure about ancestry, I did get a polyp removed (thanks, early colonoscopy!) and have to go again in 3 years because it was the precancerous type. I'm overweight and do exercise but not *that* much!

Ok that's it for me! Don't want to become the dreaded threadsitter. I appreciate all the knowledge.
posted by fleecy socks at 7:39 PM on November 19, 2017

That’s a really low ferritin level- which basically means your body isn’t storing enough iron. Follow up questions for you- how much iron rich food are you eating on a regular basis? Heme iron is found mostly in red meat, but also oysters are surprisingly high in iron if you enjoy them. Non-heme iron is what you’ll end up eating from a plant based diet in things like dried fruit, leafy greens and legumes, but has to be converted in your body to a useable form and ends up being minuscule (for me personally). I would go back to your doctor to have your B-12 level checked again, as well as asking about taking an iron supplement.
posted by Champagne Supernova at 9:54 PM on November 19, 2017

Any chance you're eating a lot of phytic acid heavy food? Normally I don't think it's sensible to worry about that stuff, but since you're iron deficient it might be worth having a review of your diet in case you're eating wild amounts of undersoaked beans or something.
posted by Acheman at 1:36 AM on November 20, 2017

I've heard that vitamin C can help increase your body's uptake of iron. Eggs and red meat are excellent sources of iron. With veg, I expect the amount of iron in them depends a lot on where they are grown. Do you like liver? Might be worth a try.
posted by Enid Lareg at 6:27 AM on November 20, 2017

It would probably be worth having your B12 levels retested. A lot can change in four years. If they're low, that could explain why you're not absorbing iron. You could then supplement or get shots.
posted by purple_bird at 8:41 AM on November 20, 2017

Ask to have your thyroid levels checked; you might have hypothyroidism.
posted by SyraCarol at 7:37 PM on November 20, 2017

Man you all are the best. I forgot to update but the short story is my iron levels are now in the normal range. I have been mostly-regularly taking a liquid iron that tastes like sweet foul death and turns your teeth black if you forget to rinse after. Also I had a capsule endoscopy and the dr saw an AVM (like a spider vein kind of thing?) which she said is most likely the cause and can be removed at my next colonoscopy. It feels good to have iron in my body, I’ll say that. And health anxiety blows. Thanks again folks for all the kind and smart answers.
posted by fleecy socks at 3:54 PM on April 15, 2018 [1 favorite]

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