Iron-Deficiency Anemia - Oral Supplementation vs Iron Infusion

Hi All! Was recently diagnosed with iron-deficiency anemia, and am trying very diligently to get "up to speed" on options/treatment modalities/best practices for treating this condition.

For reference my levels upon recent testing were:

Value	Ref Range
Iron	29	50-170
TIBC	464	250-450
Iron Saturation	6%	20-50%
RBC	3.86	3.70-5.10
Hemoglobin	10.5	12.0-17.0
Hematocrit	32.6	34.0 - 46.0
MCV	85	80-100
MCH	27	27-33
MCHC	32	31-36

I now realize I had classic and troublesome symptoms and issues for about three-four months before diagnosis was secured (fatigue, difficulty breathing upon exertion, headache, dizziness, chest pain, brittle nails, sore tongue, etc), and since have been diligently trying to do some reading about efficacy with oral supplementation vs iron infusion, etc.

I know there a quite a few of us who have had this diagnosis and am wondering what your experiences were? 

1)  Did your PCP first try a three month course of mega-doses of iron supplementation - with or without success?

2) If unsuccessful, were you immediately referred to hematologist for IV infusions?  How did you help determine what the next step would be?

3) If you had infusions, were they iron dextran, iron sucrose, ferric gluconate or ferric carboxymaltose and what was the rationale your doctor used in the infusion choice? Was it insurance related or ability to tolerate the dose? Or something else?

4) How often is are your labs run (CBCs and Ferritin/Iron), subsequent to iron-deficiency anemia diagnosis?  And specifically what labs do you and your treatment team monitor?

5) Is the treatment on-going?  Meaning, iron infusion therapy for life?  Or did the series of infusions recitify the deficiency and prevent recurrence?

Again, I thank anyone who's had this diagnosis for taking the time to tell your story.  I have searched the forums and have used PubMed to find some good articles in peer reviewed journals, but really am seeking anecdotal and first-hand experiences.  I know each of us and our journeys are very different, with different doctors, treatments, and expectations, but I do so appreciate the knowledge that comes from sharing experiences and stories.

Thanks....

 

 

Hello Christina,

We are sorry to hear what you are going through.  We see you used the search feature and found some other postings on this subject. If you don't get any responses try PM'ing the members that you found on your search and ask them if they are ok with sharing their experience.

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Go to a hematologist, your numbers are way too low to bring them up IMO with oral.  Do you know your ferritin level? 

I bet you are exhausted.....:(

I'll answer your questions too:

1)  Did your PCP first try a three month course of mega-doses of iron supplementation - with or without success?  No my PCP ordered my first round of infusions.  I was actually Dx'd with iron deficiency anemia.  The second round I went straight to a hematologist because my levels were within range but dropped significantly.

2) If unsuccessful, were you immediately referred to hematologist for IV infusions?  How did you help determine what the next step would be?  I made my own appointment (insurance doesn't require a referral).  I love him, he doesn't wait until my levels crash before infusing; they drop he's ready to infuse.

3) If you had infusions, were they iron dextran, iron sucrose, ferric gluconate or ferric carboxymaltose and what was the rationale your doctor used in the infusion choice? Was it insurance related or ability to tolerate the dose? Or something else?  First round was Venefor, iron sucrose done as IV push.  Second round was Infed, iron dextran done at my hematologist office in the oncology room.  These took about 1 hour each.

The Venefor actually had me feeling better quicker, they just cost so darn much where in Infed was $30 per infusion.

4) How often is are your labs run (CBCs and Ferritin/Iron), subsequent to iron-deficiency anemia diagnosis?  And specifically what labs do you and your treatment team monitor?  I'm still only doing annual labs; they were checked one month after infusion initially.  My hematologist and PCP run what you have listed above along with ferritin.

5) Is the treatment on-going?  Meaning, iron infusion therapy for life?  Or did the series of infusions recitify the deficiency and prevent recurrence?  The last labs didn't dictate I needed infusions, although I want to go back in and have my levels drawn again.  My ferritin was sky high which to me is odd with my previous history.  I did some research on high ferritin and the only thing it appeared to be to me is maybe inflammation that raised it like that or a bad test. 

I know some people that have to have infusions frequently (monthly, every 3 months, etc.)  Mine lasted 18 months between the 2 rounds I went through.

Thanks CajunGirl - really appreciate your reply!

Sorry you are going through that! I had to have Iron Infusions for Iron deficiency anemia due to Endometriosis. My doctor had tired large doses of Iron for several months. I had to have a blood transfusion and eventually an Iron infusion. The high doses of iron made me so sick, When we finally went with the iron infusion I felt so much better. I was in a room with about 20 people some had cancer and was  having chemo and a few were having iron infusions because of low iron due to gastric bypass. I would go with the Iron infusion. Seeing the Hemotologist was the best thing my doctor did for me.

Thanks for sharing your experience -- good to know!

I was IDA for a life time before my WLS. We were launched on iron, so I was NOT IDA about a year after my WLS. My serum iron runs around 100 (mid range), and my ferritin tends to run high (but no, I don't have hemachromatosis), somewhere between 400-900. In a strange twist of events, when one has rampant inflammation going on, ferritin rises and locks itself up and will not spend. I have Rhemumatoid and a couple other issues, hence the big swing in numbers, I aim for a nice stead 200, so when nothing is acting up, my ferritin stays right about there. Again, high mid range on most labs.

I can't testify to the Hgb and Hct, because I have a genetic disorder that makes that whole mess look like it was mangled with an egg beater.

I was lucky, since most ppl are not launched with iron. Some ppl wear by infusions, but I really do not want to go there. If I lose my insurance............ and one can do them for years, then suddenly become allergic, so I'm content to read about anaphalactic reactions. Do not want to try it.

My friend had lousy numbers and did the infusions, but did orals, too. It took a bit, but she eventually got her iron up to mid range, and ferritin up over 400, as well as sparkly shiny hgb and hct, etc. They said it couldn't be done with orals, but she did it. She was OH SO HAPPY not to be tied to needles for something she'd get in a pill without an appointment.

RNY, DS, well all malabsorb iron. Various bands basically can't eat enough volume to hold certain levels, so we all supplement, track the labs and then we are in charge of one tiny piece of our own lives.

Michelle - I really appreciate your perspective, thanks for responding.

Just a side note: some insurance companies will make you try iron dextran first before allowing Feraheme or Venofer. We infuse iron at work-lots of people are deficient-and mostly everyone starts with iron dextran.

Kate - good to know, thanks for the insurance heads up!