Elevated ferritin

I'm 2 years out and having trouble with ferritin.  At first labs this year it was 686 (normal 15-150.  At retest it was 680.  Iron and TIBC are looking great.  D3 is chronically low, but I see a trend towards normal.  B12 was high and I have discontinued B12 supplements for now, and that value has normalized. 

 

Using the search feature here has turned up very little in the way of advice for elevated ferritin that does not include iron problems.

 

Any ideas?

Thank you!

You've probably already found that elevated ferritin can also mean an infection or some kind of inflammation.

High B12 is a good thing for us since we can drop that level like a rock. Between 1000 and 2000 is fine. B6 is the one to be careful about getting too high and staying too high.

--gina

Are you on the proboards site as well? Someone posted not too long ago about elevated ferritin. If you searched and didnt find it here, you might want to check it out.

Thanks for your replies.  I will start the B12 again.  I'm not seeing a B6 level, so will ask for that.  Other than brain fog and worn-out-body syndrome, I feel okay.  My internist wanted me to find out if elevated ferritin was a bariatric surgery problem, but I can't find any information that mentions this.  Guess I'll keep exploring. 

Thanks again!

Normally we have low ferritin not high, so probably not a bariatric thing. 

 

probably the only WLS connection is that we SEE our labs. more often

I've been ill for a coupla years now, not related to my WLS at all. My ferritin runs high.

But it's a very lively little element. Mine was over 900 when Dr. A checked it, r. B ran it in another group a week later (400) and then I did my 6 months labs and it was back to 700, all in 3 weeks.

When I'm healthy, I try to keep it 200-300, as much as one can control it.

All my docs know the list of things that are wrong, so after i pull their raised eyebrows off the ceiling, they remember the second line in the medical books: any inflammation or disease process...

Most of us have low ferritin and did pre-op. Often single digits! My hema used to think I was crazy with my stated target of 250 (it's not that tightly controlled), and asked me why., Because it can drop 100 pts a year if no****ched, and even more in some cases. In my case, it leaps up, then leaps down, but that's me being freaky, living long enough to kick in some unpleasant genetics.

One of my freinds started with a 9 pre-op. She was told (as are most) that she couldn't absorb oral irons. Usually that means they only tried the 3 worst forms. So, she wanted to try it to see. She took 300mg elemental iron (150 polysaccharide0 and (150 Tender Iron). SHe had iron shots, though, vs infusion. She did them weekly, then every 2 weeks, then every 3, then monthly and so on. At the end when she stopped the shots, her ferritin was at 437. She floats around 200-300 all the time on orals now.

I know this may sound simplistic, but are you taking iron supplements? Maybe you are taking too much. I'm a little jealous because my last ferritin was 2. ​ My NP had a "how are you alive??" conversation with me, and after 3 units of PRBCs and 6 iron transfusions I'm set to get my levels checked next week. So if you have extra to spare you can send it my way!

Ha!  If I could I would give you some of my ferritin, but apparently that's not possible!  I'm on Vitalady's regimen, and iron studies are all excellent.  Internist said don't change a thing in that regard.  He is inclined to test for hemachromatosis, but wants me to make sure it's not a common issue with DS folks, and from what I am reading, it is not. 

 

Hope you continue to feel well, and I REALLY hope your levels normalize!