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Old 08-09-2013, 08:53 PM   #1
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Severe anemia, not GI related

So my husband is severely anemic with ferritin at 7. Doctors have ruled out all GI causes, auto immune, ear/nose/throat doctor and neurologist gave him a look. Going up to hematology. What are other possible causes? (besides cancer)

 
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Old 08-18-2013, 06:49 AM   #2
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Re: Severe anemia, not GI related

Hi Km,

I've been anemic for over a year and have seen several specialists as well. As my ferritin was down to 5, my hematologist was ready to start iron infusions. She had me do a small bowel follow through and a pill camera first (I'd already had both ends checked by the gastro ). Strangely, she had me taking Flintstone vitamins w/iron in the meantime. Tests came back negative, and a repeat blood lab showed that my hemoglobin and crit had risen, and my ferritin was up to 5.7. This was in the span of about 6 weeks. She concluded that I probably did have a GI bleed at some point, but that it had corrected itself. I will be seeing her again soon for a retest.

Do you know if the anemia is iron deficient? Is your husband getting any treatment for it? If so, is he able to absorb the iron? Is he a runner by chance? (I understand anemia is common with runners).

Last edited by Administrator; 08-28-2013 at 06:01 PM.

 
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Old 08-18-2013, 01:39 PM   #3
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Re: Severe anemia, not GI related

He's had the camera pill and they've ruled out GI, no bleeding. He is not a runner. His iron levels in his blood is good but not his ferretin. He was on iron supplements during GI testing and got him from ferritin 5 to 20. They also thought he'd stabilize and they took him off supplements for 60 days to test their theory. His ferratin crashed back to 7 and now he sees hematologist on 9/9. I just want to know what other causes might be other than a blood cancer.

 
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Old 08-20-2013, 06:08 PM   #4
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Re: Severe anemia, not GI related

What is your husband's white blood cell count? Calcium level? Does he have any bone pain? Swollen lymph nodes?

There are 3 ways you can become anemic -- by losing blood, by not properly producing blood, or if something is destroying the blood.

If your husband isn't losing blood, that means it's one of the later 2. If he was tested for serum iron, he was probably also tested for b12 and folate. Which means it's not a nutritional deficiency. Unless your husband is a strict vegan or endurance athlete, nutritionally related iron deficiency anemia in western males is virtually non-existent.

That doesn't leave many good options. Perhaps malabsorption?

Last edited by Erik2K13; 08-20-2013 at 06:59 PM.

 
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Old 08-25-2013, 09:24 PM   #5
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Re: Severe anemia, not GI related

All other basic blood tests have been normal. Once he had an incomplete white blood cell but they checked again and it was all clear. He's not a runner (bicyclist) and we are not vegans/vegetarians. We are gluten free, organic and etc (we live in Portland, food is very important). 2 more weeks until he sees the hematologist! Oh and he also did a round of worm wood for parasites just in case.

 
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Old 08-25-2013, 10:47 PM   #6
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Re: Severe anemia, not GI related

If everything else is clear, the hematologist may not be able to give a diagnosis on the first visit. When I had my hematology appointment, she just reviewed my blood work and made an educated guess. Her preliminary diagnosis did turn out to be correct.

With the blood cancers (lymphoma, leukemia, multiple myeloma) you typically see abnormal white cell counts. For instance, with leukemia, the white blood cell count is very high. With multiple myeloma, there's usually bone pain. If your husband isn't exhibiting other symptoms, perhaps it's something minor.

I can't imagine having to wait so long between appointments. I sent my doctor a message on a Monday. He ordered blood work for Tuesday. Wednesday he sent a message saying I had developed an anemia. I had my appointment with him on Thursday morning at 11:50 and he was able to immediately schedule me to see a hematologist at 3:30 later that day. He sent me first to radiology for x-rays at 3. The hematologist ordered more blood work be performed Friday morning. Because I had a fainting spell and my insurance company ordered me to the emergency room, I had more tests performed Saturday. I had a finalized diagnosis just 7 days after I began the process. Considering I had to take a xanax just to sleep the night before my Thursday appointment and left that appointment in tears after he raised the possibility I might have cancer, I am REALLY grateful there was only 3 hours between those appointments! I would have gone crazy.

The wait must be agonizing. I hope everything turns out well for you.

Last edited by Erik2K13; 08-25-2013 at 10:55 PM.

 
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Old 08-26-2013, 09:40 AM   #7
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Re: Severe anemia, not GI related

Frustrating indeed. He had been complaining for 15 months (every month seeing his primary) before seeing a non primary doctor to test for auto-immune before a single blood test was drawn. They got him on supplements while looking for GI bleeding getting his ferritin from 5 to 20. The theorized whatever it was is gone and he would stabilize. Took him off supplements for 60 days (more waiting) to test their theory and he had crashed back down to 7. They set his hematology appt out a month! There was one period where he did complain about his lymph nodes hurting (a few weeks), it went away and they thought it was a virus, no test.

 
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Old 08-26-2013, 10:05 AM   #8
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Re: Severe anemia, not GI related

There are some less common reasons for anemia, such as chronic kidney disease, losing blood through urine, destruction of blood (hemolytic anemia), and aplastic anemia as a side effect of drug therapy. I would first call the hematology office and ask to move appointment up, like into a cancellation spot, which happens all the time. I would also get copies of all his blood tests thus far and be sure the following have been checked: reticulocyte count, Coombs test (both for hemolytic anemia), transferrin saturation %, BUN/creatinine (kidney), bilirubin (liver), a urine test. It is possible his diet is just deficient or he doesn't absorb iron well. How low is his Hb/Hct? Does he have any other symptoms that wouldn't be explained by anemia? Such as fever, bone pain, night sweats, weight loss, loss of appetite, cough, etc? Some people have to just stay on iron supplements for their HCT to stay up. How did they rule out GI bleeding-a colonoscopy? A one time stool test for hidden blood doesn't do it! You need at least 3 done, as bleeding can be intermittent. What things run in his family? That often offers clues where to focus the search.

 
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Old 08-26-2013, 12:15 PM   #9
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Re: Severe anemia, not GI related

ladybug raises a lot of important questions.

Does your husband have other health issues? If he had been complaining of symptoms and seeing your primary care physician monthly, it seems like gross incompetence that a single blood test or referral wasn't ordered for 15 months. What was your doctor saying during all those visits? What were the symptoms?

Be your own health advocate. If you feel something is wrong, don't take "no" for an answer and don't let your concerns be dismissed.

Last edited by Erik2K13; 08-26-2013 at 12:17 PM.

 
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Old 08-28-2013, 06:28 PM   #10
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Re: Severe anemia, not GI related

Greetings.

I wonder, where is Dr. House when you need him? Anyway, I thought I'd try and answer some of the important questions raised here so far.

over the past year, according the Dr., I have had blood tests to make sure this isn't my thyroid, pancreas, or liver.

They’re also pretty sure it’s not an absorption problem since my ferritin levels were within normal range a few years back and I've gotten the all clear from GI.

My white blood cell count has stayed on the lower end of normal - increasing from 4.3 to 5.5 (K/cu mm) while on iron supplementation (standard range of 4.40 – 11.00).

Red blood cell count started around 5 (M/cu mm) (with standard range of 4.50 – 6.00) and rose to mid 5's during iron supplementation, but then went back down to mid 4’s off of supplementation. Matter of fact, my RBC, hemoglobin, and hematocrit have all decreased some while off of iron supplements. Makes me wonder if this points to blood loss after all.

MCHC has been repeatedly flagged as low and RDW has repeatedly been flagged as high. Though, I am told this is secondary to the iron deficiency / depletion issue.

Blood iron levels seem a bit low but are mostly OK. The saturation transferrin being the main issue increasing from a low 5 (L) earlier this year to 17 after a few months of fairly aggressive oral iron supplementation (standard range of 20-50), and then back down to 7 while off iron for two months.

Oh, and the "incomplete white blood cell" was actually a single metamyelocyte seen in one of my earlier blood draws. This seemed to alarm my Dr. a bit, but another has not been detected in subsequent tests.

As far as the GI stuff goes, the initial (3) occult blood tests were negative, but they still performed an upper and lower endoscopy to be sure - as well as a capsule endoscopy. I was also screened for celiac disease – all of which were also negative / normal.

As far as ongoing symptoms goes, it’s really hard to tell since I've been iron depleted more often than not these last couple years. My symptoms of low iron seem numerous. I struggle mostly with fatigue, neck tension, headaches, irritability, tinnitus, occasional mental fog, restless legs, and probably more. The symptoms themselves gets to be normal as the months go by.

One other thing not seemingly associated with iron - I noticed I have a fairly substantial Beau's lines on my big toenail, which I've read is associated with nutritional deficiency, systemic disease, or other illness in the body. But we do eat well and healthy.

P.S. I am on the cancellation wait list for hematology. This whole process - with its ups and downs, high stakes, and uncertainty has not been easy to say the least.

Whatever doesn't kill me right?

 
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Old 08-29-2013, 01:45 PM   #11
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Re: Severe anemia, not GI related

OK, it sounds like your doctors have ruled out a lot. If you don't have internal bleeding or bone marrow failure -- and it doesn't sound like you have either -- my guess is your doctor will focus on hemolytic anemia. Something may be destroying your red blood cells.

But if you don't have any symptoms other than the ones you mentioned, I'd take that as a positive sign.

How low is your hemoglobin and hematocrit, btw?

Last edited by Erik2K13; 08-29-2013 at 01:46 PM.

 
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