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hereditary hemochromatosis

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Unread 12-10-2012, 03:40 PM   #1
thbaxon
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Default hereditary hemochromatosis

I have recently been diagnosed with hereditary hemochromatosis and am now getting phlebotomies. I am a 59 year old female. After five of these my hematocrit is now increasing but my ferritin is going down. Any advice on other things I should be doing such as diet etc.
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Unread 12-11-2012, 09:18 AM   #2
Marlene
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What is it that you are trying to address with diet? The iron overload or something else.

The best thing for hemochromatosis is to get the phlebotomies to keep the iron levels (fe) around 50 -70. Beverages with tannins can help reduce the absorption of iron from your food. So having tea or wine with meals could help. Vitamin C increases the absorption. But you are best served by getting regular phlebotomies.
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Unread 03-31-2015, 04:43 PM   #3
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I'm resurrecting this thread as I continue to search for answers.

I haven't been right since I took iron supplements in August of 2013. Without going into details, all hell broke loose in my body. I had various symptoms on and off immediately after that until full blown SFN reared its ugly head in early November.

I took iron supplements because I turned up with low ferritin (iron stores) in my annual physical. I'd been having symptoms, but didn't realize what it was. I'm sure the low ferritin was the result of a double red blood donation in March that I didn't recover from.

I of course stopped being a regular blood donor once that happened, and then my serum iron levels spiked high in my last annual physical. I'm a carrier of hemochromatosis, and apparently it's not uncommon to for us to run high. I immediately went out and donated blood again...no double reds, just a regular pint.

For those who don't know, hemochromatosis is the most inherited genetic disease in humans. It's not at all uncommon.

So I'm throwing this out there because I just read this:

http://connection.ebscohost.com/c/ar...emochromatosis

"We conclude that an idiopathic polyneuropathy was diagnosed in a relative large number of patients with HH (26%), but the causal relationship needs to be confirmed in larger series."

I'm going to continue to look into it and see if any further studies have been done.
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Idiopathic Small Fiber Neuropathy since 11/2013, no progression
On the pre-diabetic spectrum, but below screening levels (FBG -86 A1C - 5.6), Reactive Hypoglycemic
  • 200 mg R-Lipoic Acid, 2 Tbsp milled flax seed, walnuts daily
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA)
  • 250 mg Grape Seed Extract
  • 64 mg Mag64 twice daily, 150 mg Benfotiamine
  • 1000 mg Valerian Root and 3 mg Melatonin at night
  • 5% lidocaine patches and epsom salt lotion for pain relief
  • Wild yam extract cream (diosgenin), marketed as progesterone cream
  • Low carb "back to the farm" diet
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Unread 03-31-2015, 05:07 PM   #4
mrsD
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Once a woman goes thru menopause, a hidden hemochromatosis may appear.

One sign is skin discoloration...sometimes misdiagnosed as hormonal (mask of pregnancy or from progestins).

This is an example in a relatively young woman:
http://www.blisstree.com/2008/09/24/...tion-shift-28/

In males this appears at younger ages, unless they donate blood regularly.

This genetic disease is fatal if not identified and the blood iron load reduced. Diabetes, and liver damage usually result in people not diagnosed properly and lead to death.
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Unread 03-31-2015, 05:07 PM   #5
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This is just a nice resource for determining your HH genetic status from 23andme's $99 test. As they can no longer provide medical results in plain English, this document tells you how to browse the raw data to learn your status:

http://celticcurse.org/wp-content/up...HFE-status.pdf

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Idiopathic Small Fiber Neuropathy since 11/2013, no progression
On the pre-diabetic spectrum, but below screening levels (FBG -86 A1C - 5.6), Reactive Hypoglycemic
  • 200 mg R-Lipoic Acid, 2 Tbsp milled flax seed, walnuts daily
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA)
  • 250 mg Grape Seed Extract
  • 64 mg Mag64 twice daily, 150 mg Benfotiamine
  • 1000 mg Valerian Root and 3 mg Melatonin at night
  • 5% lidocaine patches and epsom salt lotion for pain relief
  • Wild yam extract cream (diosgenin), marketed as progesterone cream
  • Low carb "back to the farm" diet
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Unread 03-31-2015, 06:17 PM   #6
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Quote:
Originally Posted by janieg View Post
This is just a nice resource for determining your HH genetic status from 23andme's $99 test. As they can no longer provide medical results in plain English, this document tells you how to browse the raw data to learn your status:


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Thanks for this information. I recently found out that three of my siblings are carriers of the hemochromatosis gene, and one of them has tested high in ferritin, so is going to a specialist for further testing.

I just went to my primary Doc yesterday, and he agreed to test my ferritin level. He also agreed to test me for celiac disease, since I have a sister with that disorder as well. Still waiting on the results of those tests. (One of those weird times when you're not sure if you want the test results to be positive or negative. I don't want to have a chronic disease, but if it is treatable and turns out to also be the cause of my PN - maybe it wouldn't be so bad.)
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Unread 03-31-2015, 08:22 PM   #7
janieg
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Please let me know what the specialist says about your sister, ok? This is of great interest to me.

If those researchers were correct in saying that people with HH are at risk of neuropathy, then I would assume it follows that high iron levels can cause neuropathy in some people. This wouldn't be too different from high glucose levels.

There are apparently 16 other rarer gene mutations that are involved with HH that 23andme doesn't test for. I need to look into these.
__________________
Idiopathic Small Fiber Neuropathy since 11/2013, no progression
On the pre-diabetic spectrum, but below screening levels (FBG -86 A1C - 5.6), Reactive Hypoglycemic
  • 200 mg R-Lipoic Acid, 2 Tbsp milled flax seed, walnuts daily
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA)
  • 250 mg Grape Seed Extract
  • 64 mg Mag64 twice daily, 150 mg Benfotiamine
  • 1000 mg Valerian Root and 3 mg Melatonin at night
  • 5% lidocaine patches and epsom salt lotion for pain relief
  • Wild yam extract cream (diosgenin), marketed as progesterone cream
  • Low carb "back to the farm" diet
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Unread 04-01-2015, 12:14 PM   #8
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Quote:
Originally Posted by janieg View Post
Please let me know what the specialist says about your sister, ok? This is of great interest to me.

If those researchers were correct in saying that people with HH are at risk of neuropathy, then I would assume it follows that high iron levels can cause neuropathy in some people. This wouldn't be too different from high glucose levels.

There are apparently 16 other rarer gene mutations that are involved with HH that 23andme doesn't test for. I need to look into these.
OK, I'll try to send you some info via PM, when I get it. For info - my sister tested CG for the H63D mutation. The other two were normal. (She was tested twice with the same results. She paid for one, then the doctor re-tested her and came up with the same result.)
I'm still waiting my Ferritin test results. The doctor didn't test me for the genetic mutation at this point.
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Unread 04-01-2015, 01:16 PM   #9
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Quote:
Originally Posted by Ragtop262 View Post
OK, I'll try to send you some info via PM, when I get it. For info - my sister tested CG for the H63D mutation. The other two were normal.
Ok, thanks much. Those are my exact results, by the way.

Based on what I've read, people like your sister and me are not supposed to be prone to high iron levels. If you have one bad variant on H63D as well as C282Y, then apparently there's a risk of running high, but not just on one.

There are something like 16 other rarer mutations involved, though, so it would be interesting to know if your sister gets further genetic testing done.

Funny thing with me is that since I tested low ferritin, I bought cast iron cookware and made sure I get plenty of iron in my food. Now I'm not sure what to do.
__________________
Idiopathic Small Fiber Neuropathy since 11/2013, no progression
On the pre-diabetic spectrum, but below screening levels (FBG -86 A1C - 5.6), Reactive Hypoglycemic
  • 200 mg R-Lipoic Acid, 2 Tbsp milled flax seed, walnuts daily
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA)
  • 250 mg Grape Seed Extract
  • 64 mg Mag64 twice daily, 150 mg Benfotiamine
  • 1000 mg Valerian Root and 3 mg Melatonin at night
  • 5% lidocaine patches and epsom salt lotion for pain relief
  • Wild yam extract cream (diosgenin), marketed as progesterone cream
  • Low carb "back to the farm" diet
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