Another Update - Iron Infusions

Hello everyone!

It's been a rough couple weeks for me.. My ferritin has continued to drop, it was around 32, then to 26 and now all the way down to 14 in just a matter of a month or two.

My hematologist has ordered an IV infusion to try to get it back up to normal ranges which is around 80-100.

He is also sending me to a GI doc because I have loose stools and am clearly either 1, losing blood, or 2 not absorbing iron.

I am still awaiting my celiac results.. lets hope those are negative although if they are, I am also still a little concerned because I have no idea where I'd be losing blood.

He did say that after my iron infusion in about a week or 2 I should have a resolution of most if not all of my symptoms. Particularly fatigue, weakness, dizziness, shortness of breath, etc. He said my ferritin levels are dangerously low and are absolutist causing these.

My infusion is next Thursday. I'm kind of nervous after reading some peoples experiences but also pretty excited. I'll continue to keep you all updated.

Girlie said...
Hope you find out what's causing this.


My son had low ferritin and hemoglobin for a few years....and supplementing didn't do much - would slightly raise his hemoglobin but not ferritin.

Finally found out he had Celiac disease. The antibodies were very high.....so high that they stop counting. (I think the number is 200 - but he had more)

I think a few years ago I did a celiac panel and it was negative. ugh.. it's never easy. Celiac wouldn't be worst case scenario I guess, but I can't imagine staying away from gluten, I like bread to much. LOL.

I also forgot to mention that my primary care doc is treating me with Alinia for 28 days. So far its been awful. I just started last night and not sure how long I can stay on this. My stomach is killing me and it gives me chills and muscle aches. Maybe its parasite die off, who knows.

NicHostetler said...


I think a few years ago I did a celiac panel and it was negative. ugh.. it's never easy. Celiac wouldn't be worst case scenario I guess, but I can't imagine staying away from gluten, I like bread to much. LOL.

I also forgot to mention that my primary care doc is treating me with Alinia for 28 days. So far its been awful. I just started last night and not sure how long I can stay on this. My stomach is killing me and it gives me chills and muscle aches. Maybe its parasite die off, who knows.

Did you have lyme and low iron when you did the celiac testing done? It's possible that it has come on recently.

...and did you have the Tissue Transglutaminase Antibodies (tTG-IgA) test done? That is the test that showed my son had it.

I ended up getting my celiac testing back and it was negative. The test was Anti-Endomysial ab so not really sure what that is..

I have definitely had my concerns about babesia being the reason behind it although after treating for long long, I think it's best to start ruling out other things as well.

However, I started Alinia last Thursday and so far my bowl movements have been much less. Only once a day and usually it was 3 times at least. It's encouraging but we'll see if it keeps up! I know Alinia is sometimes used to treat babesia and several other parasites.

Super excited/nervous for thursday's iron infusion.. I've read lots of amazing stories but also scary ones of people having bad reactions. Seems like a coin toss at how it will go, but definitely excited for the hopes of a new life!

Girlie said...
The best test for Celiac is

tTG-IgA Test ( Tissue trans- glutanimase antibodies)

I would ask for that one if you really want to rule it out.

https://www.celiacfaq.com/blood-test-for-celiac-disease.html

That test is the only test my son uses when he tests periodically to make sure he’s not being exposed to gluten...
The test caught him cheating when he was in high school - he was buying food with gluten

Just got these back as well, also negative!

Transglut IgA autab 1.1 u/mL Ref Range (0.0 - 3.9 u/mL)
Transglut IgG autab 2.9 u/mL Ref Range (0.0 - 5.9 u/mL)

Don't most if not all Lyme and co.'s cause low ferritin?

But Lyme causes low ferritin too. I am not referring to red blood cells