Ferritin Level

I couldn't stomach oral iron awhile back so last year my hematologist suggested iron infusions. After 2 rounds of 5 all my levels were good. Had some followup labs done last week and all my levels are low again so just started infusions again today.  Ferretin is at 19.3. ref range is 30-565.  last year it was 9.9, then after 5 infusions it was 99.6, and then after second round of infusions it was 297

but after this first round of iron infusions I need to find an iron supplement to try and maintain my levels cuz I cant afford these infusions. I was told that ferrous gluconate is easier on stomach than ferrous sulfate

I also receive iron infusions--had kpouch surgery 15 yrs ago.Became severly anemic one yr after surgery. I am now getting infusions twice a year (2 infusions each time ) i was getting ferraheme, but now it's changed to injectafer. Similar to ferraheme, but now insurance won't pay for ferraheme unless you have kidney problems (medicare). My hematolgist wants my ferritin to be above 100, so it seems likely you will qualify for transfusions.

i also take forvia vitamins, which are made especially for people with absorption problems. You can order online at inovera.com and they probably will send you a sample. I noticed a huge improvement after i started taking them 4 yrs ago--i used to get infusions more often (3-4 times a yr), now just twice (once in a while just one a yr) i take the chewables, they taste good.

i could not take iron pills either, severe cramps and didn't seem to be absorbed.

Good luck with your appt. You really have to be your own advocate and hopefully you can see a hematologist.

I also get severely sick from ferrous sulfate. For a time I got iron infusions when I was severely bleeding, but now maintain with iron citrate. I don’t know if there is an equivalent in the US, but stomach takes this pretty well. (I live in Japan.)

I’m wondering how accurate the ferritin test is. My GI doc only goes by my hemoglobin, so is better to actually test the ferritin level?

My ferritin was 5 for years.  I cannot do oral iron.  Finally found a hematologist that was willing to entertain the idea of iron infusions.  My ferritin climbed to about 10 after 3 so she ordered 3 more.  Finally my levels are up to over 100.  I am to have blood work every three months for a year and if my ferritin drops below 30 I am to call her again for more infusions.

Thanks everyone.   My primary care and GI want me to start infusions.   Marz, I do have the Forvia vitamins.  I just started them again.   I do know they work well, but even those bother my stomach.  Does everyone suffer side effects?  Are the injections painful?  

The only painful part about an iron infusion is the IV start.  Other than that it is 4 hours of complete boredom.  Take a book, download a movie!

• The forvia vitamins do not bother me, maybe you can try smaller amounts a few times a day. With my latest iron infusions--injectafer-, it only takes one hour. It's an iv drip, and then 30 minutes of saline (total for both is one hour). I always ask for the smallest needle and will also ask for a hot pack to put on my arm on top of the needle. I have also brought my own heating pad! I do know someone whose insurance does not cover ferraheme or injectafer, so I feel very lucky.

4 hours?? each iron infusion I get takes about 15 minutes

Yup, takes tons of time.  If I ever have another one I’ll ask you why.  I think there is risk of anaphylaxis.

My doctor said each infusion would only take about 15 minutes.  I had read 3 to 4 hours online, which seems consistent with some comments above.  Pouchomarx sounds like what you get and what I'm getting may be different than the others??

There are about a half-dozen different products that can be used for iron infusions. https://www.uptodate.com/conte...ncy-anemia-in-adults

These include ferric carboxymaltose (FCM), ferric gluconate (FG), ferumoxytol, iron sucrose (IS), iron isomaltoside (not available in the United States), and low molecular weight iron dextran (LMW ID). All of these products are equally effective in treating iron deficiency. Major differences include cost, formulary/purchasing agreements, and number of visits/time required to administer the full dose. 

●Cost – The relative costs of IV iron products may vary depending on local institutional purchasing agreements. In the United States, LMW ID is relatively inexpensive (typically, half the price of ferumoxytol and one-fourth the price of FCM).
●Time for administration – Administration of LMW ID is done over one hour; other products may be infused more rapidly.
●Number of doses required – The choice of product may also be influenced by the frequency of office visits. As examples, patients undergoing dialysis or chemotherapy may have frequent office visits during which frequent low doses of FG or IS can be administered. In contrast, patients for whom frequent visits are not otherwise necessary may prefer products that can be administered in one or two visits, such as FCM, ferumoxytol, or LMW ID.

Thanks Scott!  This makes sense.   I am scheduled for 8 visits total, but levels checked after every 2 visits.

I HAVE MET MY DEDUCTIBLE AND EACH INFUSION IS COSTING ME $62.00 OUT OF POCKET.!! if I need more after the first of the year it will cost me about $250 each infusion out of pocket...I CANNOT AFFORD THAT..WHAT DO I DO?

I used to get iron dextran infusions. Pro-can give large dose of iron over one infusion. Con-this is a form of iron that is more likely to cause an allergic reaction. I never had an allergic reaction but had to go to the one infusion b/c my crappy veins. Every time I got an infusion, PICC team had to insert the IV so my doctor changed me from Venofer to Iron dextran. I am not sure if it is cheaper or if you are willing to try it but just throwing it out there as another thing to look into. Good luck!!