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#1 |
Rose Garden
![]() ![]() ![]() Why climb a mountain? Because it's there!
Join Date: Mar 2005
Location: Selkirk Mountains
Posts: 52,860
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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. |
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#2 |
Rose Garden
![]() ![]() ![]() ![]() ![]() ![]() Join Date: Mar 2008
Posts: 7,261
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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.
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#3 |
Rose Garden
![]() ![]() ![]() Join Date: Aug 2009
Posts: 16,750
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He e-mailed me back too.
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ENFp Wife who is thankful to be in love....17 years Homeschooling Mom of three....15 DD dancer and 12 DS mountain biker and 5 DD calico critter and dolly mommy ![]() ![]() ![]() ![]() |
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The Following User Says Thank You to ECingMama For This Useful Post: | Soliloquy (06-22-2018) |
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#4 |
Rose Garden
![]() ![]() ![]() Why climb a mountain? Because it's there!
Join Date: Mar 2005
Location: Selkirk Mountains
Posts: 52,860
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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! ![]() |
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The Following User Says Thank You to Soliloquy For This Useful Post: | ECingMama (06-24-2018) |
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#5 |
Rose Garden
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Posts: 27,359
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The only thing I know is donating blood, which I am assuming is a no go in this case.
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Erin born of water and of the Spirit 4/96 married 5/02 Mama to: 2004 2007 2010 2012 2017 2019 Jan 2, 2024 And many I hope to hold in heaven one day ![]() |
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#6 |
Rose Garden
![]() ![]() ![]() Why climb a mountain? Because it's there!
Join Date: Mar 2005
Location: Selkirk Mountains
Posts: 52,860
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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.) |
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#7 |
Rose Garden
![]() I am the mountain. I am not the storm and the storm is not me. -Ian Cron
Join Date: Mar 2005
Posts: 28,913
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~Spring always comes after winter~ 2 Corinthians 4:16 “ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ” |
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The Following User Says Thank You to tempus vernum For This Useful Post: | Soliloquy (06-24-2018) |
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#8 |
Rose Garden
![]() ![]() ![]() Why climb a mountain? Because it's there!
Join Date: Mar 2005
Location: Selkirk Mountains
Posts: 52,860
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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.
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#9 |
Rose Garden
![]() ![]() ![]() Why climb a mountain? Because it's there!
Join Date: Mar 2005
Location: Selkirk Mountains
Posts: 52,860
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He did end up going on the drug.
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#10 |
Rose Garden
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:pray4
Have you made any progress on getting him to the specialist?
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#11 |
Rose Garden
![]() ![]() ![]() Why climb a mountain? Because it's there!
Join Date: Mar 2005
Location: Selkirk Mountains
Posts: 52,860
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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. |
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#12 |
Rose Garden
![]() ![]() ![]() Why climb a mountain? Because it's there!
Join Date: Mar 2005
Location: Selkirk Mountains
Posts: 52,860
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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 ---------- 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. |
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#13 |
Rose Garden
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I’m praying, my friend. I hope this works.
Did you ever email Matthew Wood?
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ENFp Wife who is thankful to be in love....17 years Homeschooling Mom of three....15 DD dancer and 12 DS mountain biker and 5 DD calico critter and dolly mommy ![]() ![]() ![]() ![]() |
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#14 |
Rose Garden
![]() ![]() ![]() Why climb a mountain? Because it's there!
Join Date: Mar 2005
Location: Selkirk Mountains
Posts: 52,860
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No, I can't remember why. I think I just forgot.
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#15 |
Rose Garden
![]() ![]() ![]() Why climb a mountain? Because it's there!
Join Date: Mar 2005
Location: Selkirk Mountains
Posts: 52,860
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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. ![]() I'm hoping IP6 works better. It's certainly much safer than Jadenu. |
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