Iron Infusions Not Working!

Hi Guys! You may remember me....back in March I ended up in TWH for a week having emergency surgery for two internal hernias and bleeding ulcers in my pouch. 

I had a repeat endoscopy in May that showed the ulcers to be healing. 

The issue I have been having since then is really low hemoglobin. I'm bordering on needing a blood transfusion!

My iron was low so we started to IV Iron Infusions once a week. It takes almost 6 hours for this iron to go through! Anyhow, I have completed 6 weeks of infusions now and my hemoglobin is completely unchanged! It's actually 2 points lower than when we started! Currently I am sitting at 72.

im at a total loss here! My doctor seems clueless on what to do as well. 

Has anyone else suffered this? My only option at this point is to switch to blood transfusions to bring it up....although I really don't want to go that route!

I just want to feel normal again!! I'm Soooo darn tired and these daily headaches are horrible. I have 5 kids to look after, I have no time to be sick. 

Feeling sad, but still not regretting my decision to do surgery!! 😀 .....but I'm sooooo scared of having to have it reversed if we can't figure this out. 

The plan for today's Infusion is to do one bag of blood afterwards. The only problem with blood transfusions is that it is a band aid fix as we haven't addressed the underlying problem. It will just keep happening. 😕

Sorry to hear you're continuing to struggle with this!

Is your iron going up with the infusions (despite your hemoglobin not being changed)? My only thought would be that the bleeding ulcers are continuing to bleed - clearly something is going on in there and if your iron is improving, but not your hemoglobin, that may be the culprit and you may need to get another endoscopy to determine.

The iron infusions may take a while to finally "kick in" or "take". As for the blood transfusions - I've had a few myself. No, it's not a permanent fix but it IS a way to raise your hemoglobin so it's not so dangerously low - and it is dangerous, I'm glad to read that you're doing a bag today.

I have no advice to offer but I'm sorry you're going through all of this. I hope you feel better soon!

Despite having Venofer infusions my levels would go up slightly and then drop again as soon at I had my period.  Not sure where you are at as far as planning for more kids, but I wasn't planning for more.  I had an endometrial ablasion (sp?).   My period were horrible.  Like stand up and have to shower and change my clothes horrible.  Knock on wood - since then I haven't had a period and my iron had stayed within normal range. 

Not a solution for everyone, but it seemed to do the trick for me.

Thanks Guys!

Yes, my iron levels are normal now, with good iron stores as well.  Just got my blood work results back and hemoglobin is unchanged from last week.  Yeah that was my next thought....that maybe the ulcers are continuing to bleed....guess I'd better get back on the phone with Dr.Jackson's office at TWH and book some time to have a little chat with him.  :(

I just want to feel better!

Okay, so the iron infusions are working then. Yes, definitely time to revisit the surgeon - you can't go on having such a low hemoglobin level. 

Lol...OK...Yes....I suppose they ARE working in the sense that my iron levels are now normal, but the hope was that the increased iron would bump the hemoglobin. That's not happening...

I called TWH and cannot get in to see a surgeon until beginning of September. 😕

They are now talking about doing a bone marrow biopsy to see why my body just will not make red blood cells. I'm gonna wait and let TWH make the call. If this is somehow RNY related then I feel they would know best what to look/test for. 

That sounds sensible. Did you get the transfusion today as well?

I am in a similar situation as you are with low hemoglobin levels.  I saw a hematologist last week and had an emergency iron infusion but mine was called feraheme and only took 15 mins through iv to administer.  I am going for a second dose next week and hopefully it will help.  I had RNY last August and my hemoglobin levels have been slowly falling.  The hematologist really wanted to do a bone marrow but I had one done years ago and it came back fine but she said if these infusions don't help then she will be pushing for the bone marrow.

My hemoglobin was 68 before the infusion, my ferritin is 29 but my plateletes are what is really bad at 842 (normal 145-400) but I have a very large growth like tumour (around 8lbs) attached in my groin area and it affects my legs causing sores on them so this is why I think this is a problem for me.  I am seeing a plastic surgeon to hopefully start the ball rolling to have it removed late August.  I was told I needed to lose weight before they would remove it so that is what I have been working on for the past year and a half.

I don't want to do the bone marrow cause I feel it will be a waste but I can't tell the dr no and have her not care for me under the cir****tances.  

I just wanted to let you know you are not alone in this struggle and for me I hope the iron infusions work and am feeling sorry for you that they didn't help raise your hemoglobin.  I also hope they are able to figure this out in a short amount of time for you as raising kids is exhausting without any medical issues.

Lori

What's your retic (Baby red blood cell) count?  You may need Aranesp or Eprex