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Author Topic: My quest to reduce ferritin  (Read 333 times)
Slade
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« on: August 27, 2020, 12:47:24 PM »

Hi everyone,

I'm a thal minor with ferritin above 700 ng/mL (transferin saturation already about 46%) so I decided to go on a quest to find a way to reduce it.
I made a genetic test for hereditary hemochromatosis (just the most prevalent mutation) and it came back negative. Both doctors I saw - a hematologist and a gastroenterologist said they can't put me on Fe chelators unless my ferritin is at least 1000 and there's evidence for iron overload in my organs. They advised me to check ferritin levels every 6 months and go back when it reaches 1000. I already noticed some signs and symptoms which might be related to my iron overload and besides I'm convinced that iron overload is a silent killer - I don't think I can afford to wait any longer.
My research (for which this form is very helpful) led me to three supplements which act as iron chelators - IP6, curcumin and green tea extract. I want to juggle with all of them but I'm not sure what scheme should I follow so I want to ask for your advice.
- I already know that IP6 should be taken on empty stomach which I do but I only take one capsule (500mg) in the morning. So far no adverse events
- Curcumin should be taken with food and preferably with black pepper to increase its absorption in the gut. I want to be careful with curcumin since I read it causes the gallbladder to contract and I have some gallstones already. I take one capsule (500 mg) at lunch and dinner and haven't got any issues. Should I increase the dose?
- I take only take one capsule (500mg) of green tea extract

Could you recommend a better scheme or maybe something else I can add or change?
Should I completely exclude red meat and is there a way to block absorption of heme iron? I've heard that calcium can do the trick but how much and in what form?
I'd be really grateful for your advice and any information and experience you can share.

Cheers,
Mart
 
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David Clay
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« Reply #1 on: August 27, 2020, 03:28:46 PM »

Hey Mart,

Not sure if you're familiar with the work of Ray Peat, he's a doctor and medical researcher, specializing on thyroid health. he suggests having coffee with every iron containing meaty meal, with plenty of milk. Grass fed organic of course. He says decaf works too.

I don't think much comes close to milk and cheese in terms of calcium content. Except powdered egg or oyster shells. Ive made my own powdered eggshells before as a calcium supplement, but milk is probably superior
He also suggests donating blood frequently, although you may not be allowed to, maybe you can find a work around.

The other thing ive heard of is Cilantro.

Hope theres something new there!
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Slade
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« Reply #2 on: August 28, 2020, 05:00:50 PM »

Hi David,

No, I'm not familiar with Ray Peat's work. I'll google him and see if I can get some information.
I've bought a book called "Holistic Help for Hemochromatosis" written by Dr. Eric Lewis. The book has some great information on iron overload and the use of diet and supplements in healing from it.
It says a lot about the effect of different foods and nutrients on the iron levels in the body and the iron absorption but it doesn't recommend any particular supplement regimen.
The book comes bundled with Lewis's wife's book "Cooking for Hemochromatosis" which has some great information about the food ingredients and their iron content, how to cook and combine them. I was shocked to learn that organ meats such as chicken or goose liver and beef liver/spleen can pack up to 40mg of iron per 100g serving! I'm not a big fan of pates and stuff anyway but I'm definitely going to steer clear of anything made from organs from now on

Re. blood donation - I'm very hesitant to go for it because when I asked my hematologist he said it would be quite "extreme" considering my condition

Isn't cilantro rich in iron just like parsley and some other herbs?

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Andy Battaglia
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« Reply #3 on: August 29, 2020, 02:25:46 PM »

Slade,

Try your current program and see if your ferritin begins to drop. Drinking tea with meals containing veg iron can reduce iron absorption. If you find you have no problems with the current program, try raising the IP6 to two capsules, one twice a day. I take 2 grams turmeric with black pepper capsules daily. It's great for inflammation and it does improve the immune system. As far as the immune system, zinc is also a must.
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Andy

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Andy Battaglia
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« Reply #4 on: August 29, 2020, 02:27:49 PM »

BTW, I'm really glad to see the interaction on this thread. Much of what I know I've learned from those who deal with thalassemia every day of their lives. Your input is valuable to each other and also to me.
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Andy

All we are saying is give thals a chance.
Slade
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« Reply #5 on: August 29, 2020, 03:23:13 PM »

Hi Andy,

Thanks for the advice. I currently take 1g of curcumin daily but I plan to gradually increase to 2g if there are no adverse effects. I try to be careful because of I read that curcumin promotes gallbladder contraction and I have some gallstones visible on ultrasound. My gastroenterologist advised to go easy on foods that that may provoke a gallbladder attack. I'm aware that curcumin is attributed many health benefits including anti-inflammatory properties. I read that it can used as a safe alternative to NSAIDs - if that's true it can help with my neck and low back pain as well so it's worth giving a try.
So lets see if these supplements work. I plan to test my ferritin levels every 3-4 months and will share the results with you.

P.S. Andy, it's great that you keep this forum going for all of us, thank you! I learnt so much about my condition and how people cope with it reading through the threads. It's great that we can share our problems and get support and good advice.
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David Clay
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« Reply #6 on: August 29, 2020, 06:03:39 PM »

Hi Mart,

Apologies if Cilantro has iron, I have just seen it posted on another forum.

https://raypeatforum.com/community/threads/cilantro-works-finally-reduced-my-ferritin-serum-iron-and-transferrin-saturation.14371/

This is the forum mostly covering that thyroid researcher Ray Peat, perhaps have a browse! A lot of the members are clued up and post about their self experimentation.

https://raypeatforum.com/community/threads/above-all-reduce-iron.12551/

Keen to hear what works for you!
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Slade
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« Reply #7 on: August 31, 2020, 06:20:46 PM »

Thanks for the links David. These guys talk a lot about reducing iron so I'll definitely have a look to see if I can get some ideas.
The funny thing is they're trying to reduce their ferritin levels down from 200 or even 100 to what? 0 maybe... Compared to them I feel like Iron Man Grin
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David Clay
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« Reply #8 on: September 10, 2020, 03:40:38 PM »

Hey Mart,

Stumbled on this and wanted to share!

https://raypeatforum.com/community/threads/magnesium-fixed-my-iron-overload.34369/
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Slade
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« Reply #9 on: September 15, 2020, 04:28:00 PM »

Hi David,

Very interesting, thanks a lot for sharing!
I think magnesium is definitely worth giving a try. I recently started taking 400 mg magnesium daily but I think I need to change brands because mine has titanium dioxide in it (suspected to cause cancer 
By the way the guy in the other forum says he's got hereditary hemochromatosis and probably he's donating blood often to get rid of excess iron. I wonder if that's what actually changed his iron numbers and not the magnesium.
Right now my everyday "diet" includes 1000 mg IP6, 1500 mg curcumin, 500 mg green tea extract, 5000 mcg methyl-B12 & 800 mcg methyl folate, 400 mg magnesium and a Zn/Cu capsule every other day. I drink coffee and green tea and eat a lot of cheese and diary products with my meals to reduce iron absorption. I'll do an iron panel and ferritin after 3 months and then after another 3 but if nothing changes I think I'll stop loading myself with chemicals. I'll keep B12 and folate though because it's essential for us thals.

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