I'm a little uncomfortable with the (mis) in there. Not all diagnoses of gynecological cause for anemia are wrong - just most of them. Probably all the patients who aren't experiencing other rather easily determined gynecological symptoms (like going through 4+ times as many pads/tampons as everyone else).
I kind of want to point this out, as I know someone who can pretty clearly link up all that blood leaving her body on a regular and lengthy basis with why her iron levels are crappy.
I do agree that some of the other 14% are correct, but I feel uncomfortable about saying just "diagnosed with a gynecological cause" when it seems as if most of those diagnoses were not just wrong, but half-assed at that.
So the "(mis-)diagnosed" was meant to convey "diagnosed, but not necessarily correctly" - didn't mean to imply that all those diagnoses were wrong, apologies for expressing that poorly.
Yeesh. I'm sending this to my daughter, who has been battling acute iron-deficiency anemia for several years, to the point where she's had to have iron infusions in the hospital (the most recent one in January.)
She's had a couple of endoscopies, but it's worth doing another FOB test with this in mind, since they still have NO IDEA why her ferritin just keeps dropping . . .
yeah, between endo, heavy periods when they occur, AND crohn's disease, yeah, the iron, I doesn't have a lot of it, but I'm not to anemic levels, either (at least for as long as I'm in remission). Just means I take MegaFoods BloodBuilder vitamins after dinner when I can stand to do so. I DO have documented low red & white counts, but that's due to the immunosuppressants I'm on, so I'm not terribly concerned about it.
I was about to say something very similar to this, because I also have endo and Crohn's Disease.
However, my Crohn's is relatively mild, and I'm on progesterone injections to prevent me from having a menstrual cycle, so my anemia, as of present time, is in check. But it has been a serious problem in the past.
Have your doctors considered progesterone injections for you? It seems to be working out for me, much better than pills. (My endo is, evidently, extremely uncooperative--I was diagnosed with a scope at 16, and it was the most extensive case in someone my age that my doctor had seen, and it has defied attempts to control it with BC pills, hense the progesterone.)
I'm not trying to be a shill or anything, but you could also look into the Mirena IUD. It's expensive but extremely worthwhile if it's an option for you.
You'll get the progesterone, but you'll get it at the site, which is always more effective than taking the hormones orally or via injection into the muscle tissue of a limb. This means the dosage can be a fraction of what you'd take through other methods, and your side-effects will be less. And if side effects aren't an issue for you like they were for me when I was on really high doses of hormones to control my gyno crap, then the fact that you don't have to do any maintenance for five years is really nice. There's also the fact that, unlike metal IUDs, it's almost unheard of for it to reject. (I rejected it, twice, and none of the medical professionals involved before, during, or since had ever even heard of that happening, though of course there's always a fraction-of-a-percent margin for statistical error in the testing of any product. Which apparently I define. But this means good things for everybody else...!) I wish I were able to use the Mirena. I really do.
I suspect the cost is also less in the long run, too, though I know having to shell out upfront is hard for many people, especially ones with significant health problems pummeling their finances.
An IUD was suggested to me, but only if I have problems with the injection (Depo Provera, which I take every 12 weeks). So far, the side effects of not having the injection are far worse than otherwise, if you know what I mean.
I suspect some doctors might balk at the idea of giving me an IUD, because I'm 25 and have no children.
I was told by a doctor once that the point of all this was to "protect my fertility"--and I thought to myself, "I thought it was to make me feel better?" Clearly, we were working at cross purposes--I don't go to him anymore.
HIGH FIVE. I have PCOS with a bleeding disorder, where instead of the usual PCOS symptoms of almost never having periods and only having them very very lightly, I hemorrhage for up to eight months at a time and wind up in the ER. Also have Crohn's.
In my case, I am totally anemic, and there are days when I need a walker to get around because I'm too dizzy to manage otherwise. And this is DESPITE pumping high levels of iron into me every day.
But yeah. Some of us? We've got all the tickyboxes.
Not to be "That guy with that disease" but the latest information on Celiac shows that gluten intolerance is a spectrum disorder and probably affects 25% of the US population.
One thing gluten intolerance is really good at is interferring with nutrient uptake. There's a lot of fat Celiacs, because no matter how much they eat their bodies are still starved for things besides calories.
I wonder if anyone has done any looking in that direction.
When I was hospitalized in nov for anemia & got 2 units of blood & a unit of iron they couldn't find any internal bleeding. Nor do I have scary periods. Ugh!
You could have something like Crohn's Disease--it's notoriously difficult to diagnose, and you don't always see the bleeding (mine was coming out in my stool--how fun).
Oh yeah, I had tons of blood draws for all sorts of fun tests. I got released when I maintained a 8.6 (under 8.1 is the Oh Shit levels) & told to get (another) hematologist. I've got an "anemia" tag on my lj that documents all this. It's been going on since 03
Weird side note - I was anaemic until my periods started. Then, it went away. No obvious reason for either the anaemia or the lack therof, and yes, I've been endoscoped and investigated with so many kinds of radiation it's not funny.
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(no subject)
Date: 2011-02-10 08:57 pm (UTC)(no subject)
Date: 2011-02-10 08:59 pm (UTC)(no subject)
Date: 2011-02-10 11:32 pm (UTC)I kind of want to point this out, as I know someone who can pretty clearly link up all that blood leaving her body on a regular and lengthy basis with why her iron levels are crappy.
(no subject)
Date: 2011-02-11 09:06 am (UTC)So the "(mis-)diagnosed" was meant to convey "diagnosed, but not necessarily correctly" - didn't mean to imply that all those diagnoses were wrong, apologies for expressing that poorly.
(no subject)
Date: 2011-02-11 02:20 pm (UTC)Though she also has diagnosed gastrointestinal bleeding, which doesn't help. ;)
(no subject)
Date: 2011-02-10 09:32 pm (UTC)(no subject)
Date: 2011-02-10 09:33 pm (UTC)(no subject)
Date: 2011-02-10 10:58 pm (UTC)She's had a couple of endoscopies, but it's worth doing another FOB test with this in mind, since they still have NO IDEA why her ferritin just keeps dropping . . .
-- A <3
(no subject)
Date: 2011-02-10 11:48 pm (UTC)<3
-d
(no subject)
Date: 2011-02-11 01:42 pm (UTC)However, my Crohn's is relatively mild, and I'm on progesterone injections to prevent me from having a menstrual cycle, so my anemia, as of present time, is in check. But it has been a serious problem in the past.
Have your doctors considered progesterone injections for you? It seems to be working out for me, much better than pills. (My endo is, evidently, extremely uncooperative--I was diagnosed with a scope at 16, and it was the most extensive case in someone my age that my doctor had seen, and it has defied attempts to control it with BC pills, hense the progesterone.)
(no subject)
Date: 2011-02-11 02:42 pm (UTC)You'll get the progesterone, but you'll get it at the site, which is always more effective than taking the hormones orally or via injection into the muscle tissue of a limb. This means the dosage can be a fraction of what you'd take through other methods, and your side-effects will be less. And if side effects aren't an issue for you like they were for me when I was on really high doses of hormones to control my gyno crap, then the fact that you don't have to do any maintenance for five years is really nice. There's also the fact that, unlike metal IUDs, it's almost unheard of for it to reject. (I rejected it, twice, and none of the medical professionals involved before, during, or since had ever even heard of that happening, though of course there's always a fraction-of-a-percent margin for statistical error in the testing of any product. Which apparently I define. But this means good things for everybody else...!) I wish I were able to use the Mirena. I really do.
I suspect the cost is also less in the long run, too, though I know having to shell out upfront is hard for many people, especially ones with significant health problems pummeling their finances.
(no subject)
Date: 2011-02-11 08:24 pm (UTC)I suspect some doctors might balk at the idea of giving me an IUD, because I'm 25 and have no children.
I was told by a doctor once that the point of all this was to "protect my fertility"--and I thought to myself, "I thought it was to make me feel better?" Clearly, we were working at cross purposes--I don't go to him anymore.
(no subject)
Date: 2011-02-11 02:31 pm (UTC)In my case, I am totally anemic, and there are days when I need a walker to get around because I'm too dizzy to manage otherwise. And this is DESPITE pumping high levels of iron into me every day.
But yeah. Some of us? We've got all the tickyboxes.
(no subject)
Date: 2011-02-10 11:53 pm (UTC)One thing gluten intolerance is really good at is interferring with nutrient uptake. There's a lot of fat Celiacs, because no matter how much they eat their bodies are still starved for things besides calories.
I wonder if anyone has done any looking in that direction.
(no subject)
Date: 2011-02-11 07:58 am (UTC)Ugh!
(no subject)
Date: 2011-02-11 01:43 pm (UTC)(no subject)
Date: 2011-02-11 01:51 pm (UTC)(no subject)
Date: 2011-02-11 02:33 pm (UTC)(no subject)
Date: 2011-02-11 02:46 pm (UTC)(no subject)
Date: 2011-02-12 04:13 pm (UTC)Yay for confused doctors!