Unexpected very high ferritin

[mausmish]

I've only had a total of four transfusions in my lifetime, the last one being immediately post bone marrow transplant in December. Thus, I was hugely surprised last week when a routine ferritin test yielded results of 2465! My other iron values are witin normal range, as are my kidney and liver function values (aside from slightly elevated liver enzymes). My ferritin was normal less than a year ago. My six month check-up with my transplant doctor is tomorrow. I want to go armed with as much information as possible to discuss causes and treatments.

I had my BMT 11/30/10 and have had very few issues and very few medications. I take 0.5 mg Ativan twice daily for ongoing nausea (food still tastes terrible and every bite is a struggle), Prevacid once or twice daily for acid reflux, and Valtrex antiviral twice daily and Dapsone antibiotic once daily for prophalaxis, stool softeners for constipation, otc eye drops for dry eye, and otc lotion for dry skin. I have some patchy skin rash that is presumed to be mild gvhd. That's it - no steroids, immunosuppressants, anti-rejection drugs! In addition, I get post transplant Vidaza treatments, subcutaneous injections 5 days out of every 28, as part of a clinical trial to try to prevent relapse.

Any ideas what might be going on to cause the high ferritin in the first place? I'll be retested tomorrow, and am hoping the last reading was falsely high.

I'm nervous about chelating drugs such as Exjade and would like to first try the homeopathic remedies I've read about here and heard about from other friends and relatives: wheat grass, tea, curcumin. Any recommendations about these, pro or con? Is there any known harm or benefit in taking them together or is it better to try one at a time? How long should it take to start seeing results?

I appreciate any feedback you can offer from personal experiences.

Thanks,
Karen

[Marlene]

Do get retested. I would probably get a at least 3 done, once per month to get a good handle on the FE.

Be sure to fast 12 hours before your next test. Don’t take any vitamin C either. Vitamin C makes the iron more available in the blood which is good when chelating.

Inflammation can cause Serum FE to rise and it appears you have some going on right now.
From the Iron Disorders Website: Although ferritin does act as an “iron storage” facility, another key function of ferritin is to contain iron withholding the metal from harmful invaders. As part of* the body’s natural defense system iron gets shuttled to ferritin. This function is activated and stepped up when inflammation is present in the body.


If your HGB is at least 10 - 12, you can do therapeutic phlebotomies. John does this and his HGB threshold is 10. He only gets 250ml removed every other month. This is an excellent alternative to Exjade.

Tea doesn't chelate iron. Instead, it reduced uptake in the gut from foods eaten. Curcumin is a good anti-inflammatory. Wheat grass appears to chelate the best. If you choose to do any of these, check to make sure there's no conflict with the Vidaza. Also, I would start with just one to see how you do with it.

[mausmish]

Very helpful info, Marlene. Thank you.

[Greg H]

Hey Karen!

Sorry to hear about the ferritin, but it sounds like you're doing great otherwise. Maybe it will turn out to be some weird temporary thing along the lines that Marlene suggests.

I'm trying wheatgrass, first the pills, now the powder. I'm putting it in a smoothie. Today it was carrot and pomegranate juice with blueberries, protein powder, and the wheatgrass powder. Sounds nasty, and looked like chocolate milk, but it tasted great!

Margrete just stirs it into her tea.

Good luck with your appointment!

Greg

[mausmish]

Greg, why did you switch from the pills?

Surprisingly, the transplant folks are not currently worried about the high ferritin. They said they see it all the time post transplant and it usually resolves itself. But they will keep a watch.

BMB #7 was slightly more painful than the others but not bad. It's all over so quickly, in just a couple of minutes. I just get local anaesthesia, a lot of Lidocaine in my butt! I also had 16 vials of blood drawn. Won't get most of my results for a week. They took me off the antibiotic in hopes it will help with the stomach issues. If I'm not feeling better in a couple of weeks, they want me to get another endoscopy.

[Greg H]

Hey Karen!

The pills were actually not bad, once you got used to eating a little grass every day. They were, however, kind of a dull green, and the Amazing Grass powder looked very, very green. So I thought I'd give it a shot, figuring the rich color was a sign of freshness and careful handling.

Plus I was thinking about incorporating a protein smoothie into my diet as a morning snack or lunch while I try to get down to 165. So it just kind of fit.

It occurred to me later that the dull color of the pills might have had something to do with the binder used to hold them together.

I will say, if you're not that tolerant of odd-tasting stuff, the powder in a smoothie is the way to go, because you basically can't taste it at all. I keep meaning to try it in some tea just to see what it tastes like.

I'm glad your team wasn't alarmed by the ferritin levels. I need to do some serious reading on iron overload and the usefulness of ferritin as a guide so I better understand what's up with all that.

Take care!

Greg

[celebrations]

Dear Karen,
A MDS-fellow colleage, who had her BMT two years ago, gave me similar information about her post transplant ferritin level.
Although she only had had a few tx around her BMT her ferritin was like (even) 8000 (yes !) a couple of months ago. Obviously her docotors could not really explain it, but told her that this high count may occur after a transplant probably for some liver GHvD issues....Anyway - for her blood counts are perfectly in order after the BMT, she now decreases the ironoverload by phlebotomy.

Question:
You had an MUD? Can you explain the further circumstances ? In Germany they normally only give MUDs to Babies, because one would not be sufficient....?

Thanx and all the best, Bergit

[mausmish]

Hi Bergit,

8000? Wow, that's really high. I hope mine doesn't get any higher than it already is. I am in the US. My donor was in Germany, although they will remain anonymous for at least a year. Thanks for the information. I did have a MUD. More details are on my blog, url in my signature below. I'm not sure what you mean that one would not be sufficient? It is normal procedure at Johns Hopkins. I received a large bag of marrow, over 1300 ml as I recall. There's a photo in my gallery on the blog.

Karen

p.s. Feel free to Email me if you have more questions.

[Greg H]

Originally Posted by celebrations

Question: You had an MUD? Can you explain the further circumstances ? In Germany they normally only give MUDs to Babies, because one would not be sufficient....?

Hi All!

If I can jump in here, I think I see the confusion.

By "MUD," Karen means "matched unrelated donor." I think Bergit may have thought Karen was referring to a cord blood transplant, where an adult patient may need blood from more than one donor.

Hope that helps!

Greg

[celebrations]

Hi Greg and Karen,

thanx for solving the confusion.
Right idea, right reaction.

My fault due to my problems in a foreign language !

Bye, Bergit

[mausmish]

Yes, thanks Greg!