Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: Slade on August 27, 2020, 05:47:24 PM



Title: My quest to reduce ferritin
Post by: Slade on August 27, 2020, 05:47:24 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
 


Title: Re: My quest to reduce ferritin
Post by: David Clay on August 27, 2020, 08:28:46 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!


Title: Re: My quest to reduce ferritin
Post by: Slade on August 28, 2020, 10:00:50 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?



Title: Re: My quest to reduce ferritin
Post by: Andy Battaglia on August 29, 2020, 07:25:46 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.


Title: Re: My quest to reduce ferritin
Post by: Andy Battaglia on August 29, 2020, 07:27:49 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.


Title: Re: My quest to reduce ferritin
Post by: Slade on August 29, 2020, 08:23:13 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.


Title: Re: My quest to reduce ferritin
Post by: David Clay on August 29, 2020, 11:03:39 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!


Title: Re: My quest to reduce ferritin
Post by: Slade on August 31, 2020, 11:20:46 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 ;D


Title: Re: My quest to reduce ferritin
Post by: David Clay on September 10, 2020, 08:40:38 PM
Hey Mart,

Stumbled on this and wanted to share!

https://raypeatforum.com/community/threads/magnesium-fixed-my-iron-overload.34369/


Title: Re: My quest to reduce ferritin
Post by: Slade on September 15, 2020, 09:28:00 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.



Title: Re: My quest to reduce ferritin
Post by: Andy Battaglia on September 28, 2020, 08:21:12 PM
I've been very happy with Magnesium by Life Extension. The patented TRAACS magnesium chelate works quickly. I feel the change in 20-30 minutes as it calms my restless legs.
https://smile.amazon.com/Life-Extension-Magnesium-Vegetarian-Capsules/dp/B00A7HDABW/ref=sxts_sxwds-bia-wc-drs-ajax1_0?cv_ct_cx=life+extension+magnesium&dchild=1&keywords=life+extension+magnesium&pd_rd_i=B00A7HDABW&pd_rd_r=ed4533ec-3fa0-4aca-b262-fa8b4de4802f&pd_rd_w=nP750&pd_rd_wg=iSrJV&pf_rd_p=037ca9fd-790e-4a16-836b-14da89aed20e&pf_rd_r=RDTQ4XPCNHDCAJ58P1M5&psc=1&qid=1601324334&sr=1-1-25b07e09-600a-4f0d-816e-b06387f8bcf1


Title: Re: My quest to reduce ferritin
Post by: Andy Battaglia on September 28, 2020, 08:22:39 PM
Slade I don't know if I mentioned this, but milk thistle may help with the gallbladder.


Title: Re: My quest to reduce ferritin
Post by: Slade on October 19, 2020, 01:19:57 PM
Great, thank you Andy for the suggestion. This magnesium formulation looks great and I'll definitely give it a try. I think they can deliver directly from their EU branch
I was considering taking milk thistle (again after 10 years) because of what's written in this article: http://www.nutritionalwellness.com/archives/2010/may/05_bone.php
but now as you say it may also help with my gallbladder that's definitely something I should add to my pill box  :biggrin


Title: Re: My quest to reduce ferritin
Post by: Andy Battaglia on October 26, 2020, 09:33:29 PM
Milk thistle is an amazing herb, even though it is so mild. The only real negative side effect is loose bowels when too much is taken.


Title: Re: My quest to reduce ferritin
Post by: Melissa A Tan on November 24, 2020, 01:14:10 AM
I saw this article another group. The effects of quercetin supplementation and ferritin reduction. Ferritin decreased from 136 to 90 ng/ml after 12 weeks. The information is in the table. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7015726/?fbclid=IwAR2XxsJlrkm02v5mQpODL5pziQzqQFZLzzbwS-Y6SLalL29zhtBtZD2CBPQ


Title: Re: My quest to reduce ferritin
Post by: Melissa A Tan on November 24, 2020, 11:44:18 AM
Someone also shared that zeolite helped with reducing her ferritin level.


Title: Re: My quest to reduce ferritin
Post by: Andy Battaglia on December 01, 2020, 12:51:25 AM
Quercetin has been mentioned in the context of covid and it is suggested that it might block certain actions of the virus, especially when taken with vitamin C, which helps to recycle quercetin in the body.

You can see more at https://www.thailandmedical.news/news/breaking-supplements-for-covid-19-quercetin-emerging-as-an-adjuvant-for-covid-19-treatments


Title: Re: My quest to reduce ferritin
Post by: Melissa A Tan on December 01, 2020, 10:34:09 AM
Thank you for the added information on Quercetin and Covid, Andy.


Title: Re: My quest to reduce ferritin
Post by: TonyF on February 14, 2021, 04:52:00 PM
Mart,
Did you redo your lab results after the supplementation? Would be interesting to see.

I have beta thal and take a bunch of supplements, but honestly if i had 700 ferritin i would not wait and hope all the supplements and tea/coffee etc work, i would just go and donate blood every 60 days if you are feeling in good shape generally.
Definitely avoid vitamin C with red meat.

Most mainstream docs see high ferritin as fine until 1000 as you say, but there's a lot of new info that says Ferritin over say 150 can be problematic long term. High F can also be caused if you have a lot of inflammation too though caused by something else.
I try to keep mine under 100.






Title: Re: My quest to reduce ferritin
Post by: Slade on February 19, 2021, 11:46:31 PM
Hello TonyF,

Yes, I checked my blood about 3 weeks ago and it would be an understatement to say that the results were discouraging. My ferritin just won't bulge - it measured 730 but what's even worse is that serum iron was 24,6 µmol/L which is probably the highest result I've got so far. On top of that I've got elevated phosphates which made me stop taking the supplements immediately. I need to check my kidneys before I even think of taking any of them again.
I can't argue that high iron (and ferritin) is a bad thing. God knows how much damage it does to my cells and is probably the cause why my body's aging so fast.
Regarding blood donation - I gave it a lot of thought but I'm afraid it may worsen my anemia because my Hb is constantly below limits. They may not even allow me to donate if they check it.
My hematologist doesn't approve therapeutic phlebotomy as a treatment for ferritin either which means I can't get this. So what choice have I got - a DIY blood-letting? Sounds a bit suicidal...  :rotfl  But joking aside, any advice is much appreciated!


Title: Re: My quest to reduce ferritin
Post by: TonyF on February 20, 2021, 09:53:31 PM
Slade,
I definitely would NOT advise a DIY phlebotomy you could damage a nerve, maybe you could find a nurse.

How low is your HB? Might is always around 13. The blood donation level is usually 13. Interestingly HB is usually higher in the morning than later in the day, so i donate in the morning so they don't disqualify me for 60 days lol. That was super happy when i discovered that information.

Any how good luck and report back if you make some progress.



Title: Re: My quest to reduce ferritin
Post by: Slade on February 23, 2021, 09:06:50 PM
TonyF,

Unfortunately my hemoglobin is about 12,6 lately. You can't donate if you're under 13,5 and you have to be interviewed by a medic before that (quite possible to notice my pale skin and yellowish sclera).
Even if I get to trick them once or twice what good it will do me?
I asked the doctors for chelation treatment with Exjade or Desferal but they deferred it saying I need to have at least а four-figure ferritin plus an evidence for build up of iron in my organs (i.e on a Ferriscan, etc.)


Title: Re: My quest to reduce ferritin
Post by: Slade on March 09, 2021, 10:40:32 PM
I've got some good news regarding my ferritin - it has dropped from 730 to 611 in just 6 weeks! Serum iron has also dropped from 24,6 ot 18 µmol/L and Hb raised from 12,6 to 13,5.
What did I do to achieve this? Absolutely nothing except I stopped taking the supplements.
I have a theory which may explain why this happened - when I got tested the previous time I didn't feel so well and I think I had an episode of more intense hemolysis at that time. I think that when hemolysis is intense a lot of iron is released and this causes the numbers to go up. Later on things get better, new red blood cells are being produced with the existing iron and ferritin drops a little bit. What I can't explain to myself is how I got such high ferritin in the first place. I guess when Hb drops the body thinks it's getting iron deficient and increases absorption from food. I wonder if it's a good idea to switch to a vegetarian diet when I notice signs of more intense hemolysis? Maybe I'll try that next - it may not work but it won't harm I think.


Title: Re: My quest to reduce ferritin
Post by: Melissa A Tan on March 10, 2021, 05:53:13 AM
Yay Mart! Good to know that you managed to reduce your ferritin.


Title: Re: My quest to reduce ferritin
Post by: Andy Battaglia on March 14, 2021, 09:35:10 PM
Slade, is there a possibility that the higher ferritin is a result of inflammation or infection in your body? This is a common cause of higher ferritin.


Title: Re: My quest to reduce ferritin
Post by: Slade on March 19, 2021, 11:30:55 PM
Hello Andy,

Yes, it's quite possible but I'm unable to identify it. The gastroenterologist made a thorough ultrasound and elastography exam on my liver and also asked me to test for hepatitis B & C (both came back negative). He said the liver was OK but nevertheless asked me to stop drinking alcohol for 6 months and recheck - there was no change. I visited an endocrinologist to check my thyroid and test the hormones but everything was normal as well. Routine blood work and CRP are unremarkable.
When I tested my ferritin for the first time in 2013 it was around 600 and hasn't dropped since. I assume if there was some underlying inflammatory condition it would have developed or advanced by now. I'm a bit lost and would like some advice.