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Unexplained iron deficiency anemia

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Posted 7/23/2013 1:40 PM (GMT 0)
Hi Gang,
I'm getting frustrated! Both my colonoscopy and capsule endoscopy were completely normal, but I still keep getting anemic. Now my doc is referring me to a hematologist, which makes sense, but he is also ordering a small bowel follow through test. I thought the camera swallow as a superior test to the SBFT? I am going to to the test since my doc wants to "cover all bases" but does this sound like a waste of time to you? My GI symptoms are not bad now, so it seems as though I'm in remission, yet my iron stores and overall anemia remains a problem. Any ideas, or advice is appreciated.
Posted 7/23/2013 1:49 PM (GMT 0)
I agree, a SBFT is an odd choice. That would show stricturing, or thickening, but not really any small features like ulcers. What does you GI say about this other than "cover all bases" (which sounds like CYA IMO).
Posted 7/23/2013 1:56 PM (GMT 0)
Hi Kazbern,
I don't think he knows anything else to do, and I'm pretty stumped myself. If the pill cam and colonoscopy are fine, what else is there? I asked about doing more fecal occult tests, since my last one was positive for blood, but he said that's not useful because even a small hemmie would test positive for blood. So I guess a hematologist will look at absorption issues? My suspicion is that I'm losing blood somewhere in my GI tract, but beyond the anemia, I can't prove where. He doesn't want to treat with Prednisone or other Crohn's meds without knowing what we have. Do you have any ideas? I am still on the Pentasa, but nothing else for Crohn's. I'm glad I was already diagnosed with Crohn's in the past or this whole situation would even be worse!
Posted 7/23/2013 2:40 PM (GMT 0)
I would suggest that you try a gluten free diet. No joke. And when is your hematologist appt?

http://www.ncbi.nlm.nih.gov/pubmed/11197242

http://www.ncbi.nlm.nih.gov/pubmed/23161292

Posted 7/23/2013 2:58 PM (GMT 0)
I don't know when the appointment with the hematologist is yet. I'm waiting for my GI's office to schedule it and call me back. I live in a very small town, and you can't see specialists unless you are referred by a doctor. I have tested negative for celiac. I've tried gluten free, but hated it and didn't last long. I see your point though, and I think you may be right....maybe I'll try it again. Also, my TSH was 4.23. I asked my internist to do more extensive thyroid testing as my mom had hypothyroid, ( I think Hashimoto's) and my internist said it's not necessary....I thought that may be why I'm tired and anemic. I'm getting aggravated with both doctors at the moment! Maybe I can get the hematologist to do the thyroid tests. This whole process is ridiculously frustrating!
Posted 7/23/2013 3:01 PM (GMT 0)
When you say you tested negative for celiac, what exactly do you mean?

Here's another link I just added (didn't see your response)

http://www.ncbi.nlm.nih.gov/pubmed/23161292

I think thyroid testing is a really good idea. Perhaps an endocrinologist would be a better approach than the hematologist (NCOT I see you, LOL!)
Posted 7/23/2013 4:23 PM (GMT 0)
Hi Kazbern and thanks for your help. I had blood work and biopsies for celiac in the past that were both negative. Also, I've gone for many years with normal iron levels when I'm in remission from the Crohns. This current bout of anemia is new since April. In the past, when I've been anemic, my GI was able to find a source...last time it was a bleeding ulcer in my small intestine. I've had positive biopsies for Crohn's in the past, but it's just not showing up currently. In order for me to see an endocrinologist, I need a referral and my internist doesn't think it's necessary. ( Can you see me pulling my hair out:) So I guess I'll take the path of least resistance, and ask the hematologist if s/he will test for thyroid and if not, maybe the hematologist will refer to the endocrinologist. Otherwise, I can demand it from my internist, but I'm trying to not burn bridges in my small town, and get along with everyone. I do think the SBFT test is really stupid....I don't know whether to just do it anyway, or refuse it.
Posted 7/23/2013 5:14 PM (GMT 0)
Personally, I would refuse the SBFT. It's radiation you don't need, at least as far as I can tell. I'd ask the GI to give you a stronger justification.

You can develop celiac out of the blue. Perhaps it's time for another round of blood tests. Did your GI biopsy the upper GI tract during your most recent scope?
Posted 7/23/2013 6:15 PM (GMT 0)
Aww gumby...this is frustrating for you.  I agree that the SBFT is not an optimal choice at this time.  If he won't do simple stool tests because they won't provide definite answers, why the more cumbersom sbft?  I would counter offer that if the tests the hematologist elects AND the thyroid test come back normal, then you would consider the sbft as a last resort.  After all, that way you can look like you are working with them to try to get an answer without pushing their buttons too much.

I get my thyroid tested regularly due to my anemia and general lack of get up and go...I wish you didn't have to fight it so much with your family history.  Maybe making a bigger poit of the family hx would help.

Please do see the hematologist...I have learned so much from the few I had contact with lately for others, I am hoping they can give you answers too.

Posted 7/23/2013 8:13 PM (GMT 0)
Thanks Habs,
I am getting extremely frustrated!! My fear in refusing the SBFT is that I don't want to seem like I'm saying "Help me, help me" and then refusing to do what is then suggested. But it does seem like a ridiculous waste of time. I haven't heard back from my GI, but I think it's a good idea if I try to at least delay the SBFT until I see the hematologist first. I'm hoping I can talk the hematologist into testing my thyroid, and if not then I'll be more assertive with the internist. I had my colonoscopy on 7/11, and at that time my doc said he'd call me with results. I've had to call three times, and when I finally spoke with my GI he called and actually said,"What's Up?" like he didn't even know why I was calling. He has times when he's a great doc, and other times he seems totally disconnected and out of it. GRRRRRRRRR! Thanks for the support. I'm really a very polite but assertive person, but I'm still moving in slow motion!!!
Posted 7/23/2013 9:50 PM (GMT 0)
Hi Gumby, did you have an upper endoscopy? You mentioned in your signature that you've got GERD. As an old GERDie (if I might call myself), I have developed gastritis, duodenitis and lately both together gastroduodenitis over the years. Sometimes when the esophagus or the stomach are ulcerated, small streaks of blood can leak. By time, this might cause anemia. I'm anemic too and nothing can push my iron level but I'm suffering constantly from my gastroduoenitis and can hardly eat.
BTW, you mentioned that you are on Pentasa. Check this article about IDA and especially drug-induced anemia:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2883127/
Mesalazine is the essential component of Pentasa.
Hope you feel better soon :)
Posted 7/23/2013 11:04 PM (GMT 0)
Anemia is thought to be the most common extraintestinal manifestation of IBD with a prevalence of 6%-74%

I'm glad they were able to narrow it down to such a precise figure.

Anyway, I agree, an SBFT seems a bit of an odd choice after the pill cam, but it's conceivable the SBFT might pick up on something the pill cam missed. If it was me, I'd just probably get it done, but I don't think you're wrong to query it. It is annoying when the doctors decide to go down one path and you think they should be going along another path. But it's still better that they're doing something than nothing at all. And if you go along with them and their tests are negative, you've got more chance of getting the tests that you want.

But if you feel uncomfortable with it, then don't do it. Unnecessary radiation is a valid point, but on the NHS that's probably not such an issue. It's not like they're exactly forcing CT scans on you every other week; you're lucky if you get one at all.
Posted 7/24/2013 12:34 AM (GMT 0)
Hi Minnietoty and NCOT...Thanks for the articles and info. I had an upper endoscopy last year and my GERD isn't really bothering me much right now, and the pill cam that I just had should have picked up upper GI bleeding. If I can manage it, I'll try to see if I can arrange to see the hematologist first (I don't know if I have a choice) and try to delay the SBFT....I'm not as worried about the radiation as much as getting very constipated and messed up from the barium and wasting my time and money. I still think just doing the occult blood stool test would tell us if I'm losing blood from blood loss vs. lack of absorption, but my GI doesn't agree. I do get tired of having to work so hard to just get care.....and I am one of the lucky ones with great insurance....so frustrating!
Posted 7/24/2013 1:10 AM (GMT 0)
Good luck w your appointment w the hematologist. Occult blood test is a good idea thu doctors always tell me it won't show anything! Agree w u that our path of finding the suitable treatment is not that easy. I don't know why do doctors give us a really hard time! I have an appointment in the morning w my GI and I have to keep writing down all the points I need to discuss and be very alert during the appointment for negotiating meds. I start thinking days before the appointment abt what to talk abt and how not to miss any point or forget to ask abt a new symptom. They can't get convinced that by experience and suffering, we have more expertise in identifying our symptoms than they do. I normally have to negotiate what meds to be prescribed simply coz I have taken a lot of meds before seeing my current GI 6 years ago and remember their side effects. But I have friends and family members who are meek patients and accept anything the doctor says and take it for granted. Sometimes, I do sympathize w doctors who have patients like me at least. I owe this forum a lot. I was literate w regards to Crohn's and didn't know a lot but the exchange of experiences taught me a lot.
Hope your appointment goes on well. Keep us posted.
Take care :)
Posted 7/24/2013 2:40 AM (GMT 0)
Minnie...good luck with your appointment tomorrow. I hope it goes well. Kazbern...I'll ask about when I was last tested for Celiac...I know I've had biopsies and blood tests in the past, but I don't know if he did it on my last endoscopy. My GI's office has not called yet to schedule either the hematologist or the SBFT. I'll give it another day and then I guess I'll have to bug them again....so annoying. Thanks everyone....I'll let you know what I find out when I find out anything at all. The good news is that I've had two iron infusions and I actually don't feel too bad right now....so there is that:)
Posted 7/24/2013 3:59 AM (GMT 0)
this happened to me so i will quickly tell my story. dont know if it will help any....

a few months AFTER stopping 6-mp, which i was on for like 14 years, i became anemic. in two months time i had two transfusions. i was not feeling symptomatic. i had not abdominal pain. i saw no bleeding. colonoscopy and other tests looked ok. so what was going on? hematologist said it had to be CD. but i was feeling the best ever. when i was miserable and having flares and bed ridden and bleeding profusely, i was never anemic. it took two years of my ferratin levels and thus RBCs being up and down but eventually the anemia just went away. so odd. all i did was take iron supplements. i used solgar iron tablets. you can get them in health food store or internet. hematologists generally recommend slow-fe, but that formulation of iron is constipating. dont use it.

i think in my case my anemia was caused by going OFF the 6-mp. one side effect it causes that they dont really tell you about it is bone marrow suppression. all i can think is that for some reason going off of it, it somehow upset my system that was used to getting this drug and now had to reset itself and find its new normal. like how tapering off prednisone is necessary to get your body to start naturally producing cortisol again. it was the only thing i can think of. just really weird.
Posted 7/24/2013 1:04 PM (GMT 0)
Hi Crazy Harry,
Thanks for your input. It may be that I don't figure it out, and I guess that's ok. I'm hesitant to go off my Pentasa, because my Crohn's looks the best I've had it since diagnosis. I keep trying to get off my Dexilant (ppi) but then the heartburn/reflux issues just come back. I'll let you know what I find out.
Posted 7/24/2013 10:41 PM (GMT 0)
@Crazy Harry - I'm almost sure 6MP made me severely anaemic, but I can't remember dates well enough to be certain it was that. However, I took methotrexate last year and that definitely coincided with becoming severely anaemic once again (haemoglobin of 7). My IBD nurse denied the connection; said she hadn't heard of methotrexate causing anaemia, but you only have to look up the side-effects online to see that 6MP, methotrexate et al can cause bone marrow suppression, which can result in the lowering of either white or red blood cells (or both).

I don't know about your theory though :-/ It sounds reasonably plausible, but I honestly don't have a clue.
Posted 7/25/2013 10:47 PM (GMT 0)
yeah, i was at a total loss and this reasoning made the only sense. the only change was stopping the 6-mp and then bam! anemai. from a logical cause/reaction process it makes sense to me. but like you said, doctors arent going to give it a second thought let alone any possible credence. "take your pills" they say. my hematologist couldnt believe i wasnt taking any meds and refused to go back on them. heck, i was feeling the BEST ever by quitting them and did not feel symptomatic. doctors have their place, but after having this disease for like 15 years at that time, i was pretty in tune with my body and new what was up. i knew i didnt have a flare.

now i just suffer from acute adrenal fatigue! ha ha ha - it always seems to be something.....
Posted 7/29/2013 2:08 AM (GMT 0)
I think iron is absorbed in the terminal ilium.  I have had mine resected and I do not absorb iron, need infusions.  I'm sure even if you have your bowel still if it is scarred and badly diseased theres your answer.  The hemo will tell you, that's who put my puzzle together.

Julia

 

Posted 7/29/2013 12:20 PM (GMT 0)
Thanks Julia...my appointment with the hematologist is on Wednesday, so I'll let you know what I find out
Posted 2/1/2014 6:51 PM (GMT 0)
Same thing happened to me this summer and is ongoing. I has symptoms of iron deficiency but instead thought it was my medication Imuran and changed to Remicade. It wasn't months later that I found out I had a ferritin level of a 5, extremely low iron and iron saturation as well. I have since then had a colonoscopy, video capsule endoscopy, and tested negative for celiac and no active disease was shown so i have no clue why I became iron deficient as I eat plenty of iron rich sources. I have since discontinued Remicade as it seemed to compound my symptoms. So now I'm on no medication and have been receiving iron infusions to quickly pump up my iron.

Very frustrating condition, I'm worried that my iron stores will just continue to drop if I don't know the cause.
Posted 2/1/2014 9:29 PM (GMT 0)
Hi crohns26,
This is an old post. You might want to start a new one and introduce yourself. I ended out getting the small bowel follow through test which showed a complete lack of mucous lining in my terminal ileum...so this was either a current inflammatory reaction or scar tissue and they couldn't tell which. The hematologist felt that the anemia was from blood loss and not chronic illness. We never found the source. I ended out getting two iron infusions of Feraheme. That actually caused my iron stores to go slightly too high, but I'm sure that will even out eventually. My last hemoglobin was at 14 which was higher than it's ever been in my life. So we never figured it out, but whatever was bleeding seems to have stopped for now. I do think I've heard from others that Imuran and Remicade can cause anemia as NCOT said. I hope the iron infusions work for you.
Posted 2/2/2014 7:00 PM (GMT 0)
I checked the websites listing nutrient depletions caused by over-the-counter and prescription drugs. You might want to check out each medication and discuss it with your doc. B12, magnesium, potassium, and melatonin jumped off the page. Just search for "drug induced nutrient depletion" to find a site that you and your doc can discuss.
Posted 2/2/2014 10:32 PM (GMT 0)
Hi gumby, I know how frustrating it can be. I'm anemic as well. Perhaps you have previous bowel damage that affects absorption of iron, so even if you don't have any present
disease activity going on at present, you could have an absorption problem. I was on Pentasa for years, and they took me off because they said it was causing my anemia. I looked it up and sure enough it can cause anemia in some.
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