Reducing ferritin levels

[Soliloquy]

I know it's a long shot but has anyone reduced their ferritin levels? DH has high ferritin from blood transfusions. The recommended drug has a lot of side effects.

We are already doing some of the things in this article. Turmeric, milk thistle, foods high in sulphur, tea, raw milk.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3821171/

and I'm planning to add in organic soy protein powder.

I have to be careful with herbs as some are immune stimulants and he has a history of life-threatening auto-immune disease.

[sprout]

no, I do not. I would recommend emailing Matthew Wood though if you think it would be helpful. I know when I was in desperate need of herbal advice he was quite helpful.

[ECingMama]

Originally Posted by sprout

no, I do not. I would recommend emailing Matthew Wood though if you think it would be helpful. I know when I was in desperate need of herbal advice he was quite helpful.

He e-mailed me back too.

[Soliloquy]

I used to live a few hours from him.

Thank you, I will see if he has any suggestions. And I added his books to my wishlist!

[Aerynne]

The only thing I know is donating blood, which I am assuming is a no go in this case.

[Soliloquy]

Yeah, he needs blood transfusions so the cause won't go away.

---------- Post added at 07:44 PM ---------- Previous post was at 07:42 PM ----------

Oddly enough, his dad has hemachromatosis and donates blood when he needs to. But different blood type than DH. (DH doesn't have the gene for hemachromatosis.)

[tempus vernum]

no advice but prayers.

[Soliloquy]

I've been nagging for him to go see his specialist in Portland. His hematologist is great but he needs to see the PNH specialist. We need insight on why, after years of blood transfusions, he's suddenly experiencing iron overload.

[Soliloquy]

He did end up going on the drug. So far, "side" effects are mild. We're praying this is a short-term need and he can stop taking it soon.

[mommylove]

:pray4

Have you made any progress on getting him to the specialist?

[Soliloquy]

No, only that he agrees he should go soon. Part of it is that it's a full day's drive to get there so it's a 3-day process.

---------- Post added at 09:06 AM ---------- Previous post was at 09:06 AM ----------

But he has emailed her and she responds very thoroughly to emails.

[Soliloquy]

I found something!!!!

IP6, a form of inositol, made from rice bran. Just ordered. It arrives Friday. I'm hoping this helps! The chelating drug he's been on since I started this thread doesn't work very well at all.

---------- Post added at 10:14 AM ---------- Previous post was at 10:13 AM ----------

Originally Posted by Soliloquy

He did end up going on the drug. So far, "side" effects are mild. We're praying this is a short-term need and he can stop taking it soon.

He's been able to go off it for a week or so at a time, then he needs to go right back on it. And it's very SLOW at getting that ferritin level down.

[ECingMama]

I’m praying, my friend. I hope this works.

Did you ever email Matthew Wood?

[Soliloquy]

No, I can't remember why. I think I just forgot.

[Soliloquy]

So I actually found something that reduces ferritin. IP6. It's a form of inositol. Made from rice bran. Chelates iron out of the body. Recommended for people with high iron, post-menopausal women, older men, etc. High iron is a risk factor for cancer.

Turmeric extract is also supposed to be helpful.

Drinking coffee or tea with meals helps reduce absorption of iron.

But IP6 is the best thing we've found so far.

DH has been on Jadenu off and on since my first post. That drug is really hard on the kidneys and some people go suddenly into kidney failure while on it. Dh's labs have dipped into the "kidney disease" zone but go back to normal when he stopped the drug. His hematologist has him take jadenu as long as his kidneys seem to be doing ok, then stop when they're not. And then start again. And Jadenu is not even very effective. His ferritin is still much too high, even when he's taking it.

I'm hoping IP6 works better. It's certainly much safer than Jadenu.