Is it just anemia?
May 30, 2017 9:23 PM   Subscribe

My anemia won't improve, I don't seem to produce enough stomach acid, my hair's like straw, but everything's fine with my thyroid...what?

So I've had both low ferritin and low hemoglobin for a decade (I'm in my early 30s) - ferritin always in the low teens, hemoglobin always below 125 g/L . For much of that time that was probably related to my vegetarianism, but I've been eating red meat regularly for nearly three years, and taking iron supplements (FeraMax) for the past 6 months hasn't done much on the ferritin front. I tolerate the iron supplement I take just fine, but it's as though it's not doing anything.

Being anemic on its own is something I can live with, but over the past few years I've developed some digestive issues consistent with low stomach acid, and my hair and skin are almost intractably dry. I guess I can keep popping digestive enzymes before every meal and investing in vats of Lubriderm every few weeks, but I wonder if these issues are connected.

These sound like things that are consistent with hypothyroidism, but I had a full thyroid panel done a few months ago and there's no indication of hypo or Hashimoto's. I also don't have PCOS. My GP and naturopath haven't been terribly helpful now that there's no evidence of garden-variety endocrine stuff going on with me.

I know there's some relationship between low stomach acid, iron absorption and thyroid function, but without me having hypothyroidism, is it possible that long-term anemia's mimicking a thyroid issue? Is there something else going on, perhaps? Am I dying?

Other possibly important details:
* I have regular, moderately heavy periods.
* I've had endoscopies to figure out my digestive issues, and they've only ever shown evidence of an esophageal spasm, which might have something to do with low magnesium levels.
* I take Vitamin B12 and D supplements, and my levels for both have improved a lot over the past couple years.
* My folate levels are normal, but I don't supplement for it.
* I'm of an ethnicity with low celiac incidence, so I'd be really surprised if I had some sort of absorption disorder.
* I cook in cast iron skillets as much as possible and I've tried to otherwise optimize my diet for iron absorption (lots of citrus, no tea, coffee or dairy with iron-rich foods).

Thanks in advance!
posted by blerghamot to Health & Fitness (18 answers total) 7 users marked this as a favorite
Ever been tested for celiac? It can cause anemia.
posted by leslies at 9:44 PM on May 30, 2017 [2 favorites]

Celiac is the most common cause of treatment resistant anemia in adults, you really should get tested. It's on the rise in adults and it's a simple blood test. You can also be tested easily for hypochlorydia, which is low stomach acid. A GI or a decent GP can do these tests for you pretty darn easily. Are your B12 levels normal? You need stomach acid for them to be normal and you need B12.
posted by fshgrl at 9:59 PM on May 30, 2017 [1 favorite]

Your thyroid is great-- but have you had your parathyroids checked? They're not something people automatically test, but parathyroid problems can resemble thyroid symptoms.
posted by Rush-That-Speaks at 10:42 PM on May 30, 2017

It's worth remembering that normal thyroid ranges vary from lab to lab (and so does interpretation, from doctor to doctor), and, that people with issues can be symptomatic with normal results. Perfect storm for not ever getting to the bottom of it (or completely excluding the possibility of a thyroid problem), even with a good and committed doctor who listens to women. Word is that only endocrinologists are really positioned to assess thyroid stuff that might be subtle (and beyond that, only some endocrinologists).

IME/O, Ontario doctors are pretty conservative about testing and referral, and are unlikely to go beyond standard tests, unless they have a strong suspicion in a particular direction. (Even for easy or cheap tests. Even - maybe especially - for celiac.) Is your doctor unlike most Ontario doctors? If not, I recommend finding a GP who's a little more open, it's the only way through. (I unfortunately don't have ideas on how to find one, but maybe you'll have luck asking for recs from people you know.) Then, same for an endocrinologist (unless a different GP knows one who would investigate things more deeply).
posted by cotton dress sock at 10:53 PM on May 30, 2017 [3 favorites]

Cotton dress sock: My experience with getting this investigated in Ontario - even with a great GP - has wasted years of my time, but now I live in another part of the country, where GPs are even more conservative with tests. Realistically, I may not be able to see an endocrinologist or GI specialist here before early 2018, and that's only if a GP is willing to hand my case over to our centralized referral system. So I'm expecting to play a long game, and I accept that I very likely won't start to feel better until next decade.
posted by blerghamot at 11:34 PM on May 30, 2017 [1 favorite]

I don't think I have enough/the right words to express how I feel about that. Some of them are in a memail :/ ... I'm just so sorry it's gone on this long, and is likely to continue.

I did have another thought about your question - I understand that Helicobacter pylori can sometimes be difficult to diagnose without special tests (:/) and has been associated with iron deficiency - has this been ruled out? (I wonder if anyone else can speak to this possibility.)
posted by cotton dress sock at 1:10 AM on May 31, 2017

If you can't count on your GP to help you promptly, then you can do a pretty simple test to see if this is gluten-related. Try eating gluten-free for two weeks. Don't throw out all your pasta, etc, just put it in one cupboard.

If you feel better after your two-week trial, then you've got an answer. The nice thing is: if it makes you feel better, you can eat gluten-free even without an official diagnosis. In order to get diagnosed, you typically have to be eating gluten for at least 2 weeks to a month, which is why they typically tell you to get the bloodwork done first before doing the gluten-free trial. But if you can't count on your doctors, then you might as well do the trial first and see.

If it doesn't make a difference, then take all of your gluten stuff out of the cupboard and keep looking for other answers.
posted by colfax at 3:31 AM on May 31, 2017 [1 favorite]

Have you ever had a rheumatologist look at you? Sometimes autoimmune diseases can cause the symptoms you're noticing, including dry hair, skin, digestive issues, low ferritin.
posted by gemutlichkeit at 5:38 AM on May 31, 2017

I'm a hematologist, but IANYH. Low stomach acid may impede your body's ability to absorb iron properly from the GI tract. You might benefit from IV iron infusions if that is available to you.

You don't say that you've ever been evaluated by a gastroenterologist. If that hasn't happened, it may be worth looking into - if you had something like celiac, the best way to test for that is with biopsy. Also agree with an evaluation for rheumatologist conditions.
posted by honeybee413 at 6:54 AM on May 31, 2017

I had really low iron that didn't respond to taking supplements, likely due to my very regular heavy periods. My doctor recommended an iron transfusion and I have felt amazing since that, with no dip in my levels. The doc felt it might be because I don't absorb iron well that I wasn't having any luck with supplements or eating it.
posted by fairlynearlyready at 7:46 AM on May 31, 2017

One more suggestion: have you had a renal panel? Many of those symptoms can be related to chronic kidney disease, which is otherwise asymptomatic - I had it for years before it occurred to a doctor to do a kidney disease screening.
posted by camyram at 8:57 AM on May 31, 2017

How is your B12 -- you say it's improved, but is it GOOD? I have these same symptoms and I have pernicious anemia -- namely, I basically don't absorb B12 from food. Getting B12 shots has helped immeasurably. (The stomach acid aspect is hard to control, in my experience, and it's a pain in the ass.)
posted by Countess Sandwich at 10:13 AM on May 31, 2017 [2 favorites]

I also had ferritin levels that wouldn't budge, but stayed level after a summer of iron transfusions. Highly recommended.
posted by fritillary at 6:49 PM on May 31, 2017

Can you get your heavy periods treated so you are not losing so much blood?
How is your vitamin D level?
posted by SyraCarol at 7:25 PM on May 31, 2017

Realistically, I may not be able to see an endocrinologist or GI specialist here before early 2018, and that's only if a GP is willing to hand my case over to our centralized referral system

I'm loathe to say this given the usually strong state of healthcare in Canada , but if you've exhausted all of the Canadian public health service's willingness to take your problem seriously, and you have $$, can you go for private screening in a private rheum/endocrinology clinic?

If you are spending any money on naturopathic remedies or naturopath - it sounds like it isn't working for you - then perhaps you could redirect this cash towards the above goal.
posted by lalochezia at 5:51 AM on June 1, 2017

Thanks for your suggestions, everyone. My B12 levels are in the 400s with supplementation, so it's probably not pernicious anemia. My Vitamin D levels are at the low end of normal, but normal for my ethnicity. I've never had a doctor mention celiac as a possibility. I have a lot of trouble feeling comfortable about maintaining dietary preferences as it is, so a celiac diagnosis would be a psychologically scary situation for me to deal with.

IV iron and getting a hormonal IUD to do something about period stuff are both things I'll look into in the meanwhile. My former GP suggested that I might be losing iron faster than I can build it up. I'm on the pill to lighten my flow, but it's never been of much help (and I've tried almost every BCP formulation available in Canada over the past 15 years).
posted by blerghamot at 7:17 PM on June 1, 2017

With supplementation my B12 levels are 800-1200 and I do have pernicious anemia so it's worth looking into. 400 is the low end, and that's with supplementation. However to get an accurate level and antibody test you have to stop supplementing for 3-4 months. Which kind of sucks.

Pernicious anemia is really just the end stage of autoimmune gastritis that destroys the acid secreting cells in your stomach though. The same cells secrete IF and stomach acid too that you need to digest and absorb various things. So to really diagnose PA for sure sure, you get an endoscope that samples your stomach. That used to be how they diagnosed it in the absence of a family history and you can still have it done. These days the antibody blood test is available so obviously most people do that, but it does require stopping supplementation for a long time first.

Ultimately anything that causes low stomach acid WILL cause B12 deficency just because of the chemistry of how it's absorbed. Same with iron. So PA will because it destroys the acid secreting cells but so will acid suppressing medications ex PPIs (like zantec), metformin and various other drugs will cause it too (b12 deficiency. not sure about iron on that one). It's worth reading up on the other causes first and seeing if anything jumps out at you.
posted by fshgrl at 10:37 PM on June 1, 2017 [1 favorite]

400 is low for supplemented B12! You need more B12. Are you supplementing with vitamins, or injections? Injections are much more effective.
posted by Countess Sandwich at 10:52 AM on June 7, 2017

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