It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Restless Leg Syndrome Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 12-03-2009, 01:40 PM   #1
Newbie
(male)
 
Join Date: Dec 2009
Location: Wolcott NY USA
Posts: 1
Richard Blum HB User
Thumbs up hemochromatosis (iron overload) and RLS

I was diagnosed with heretitary hemochromatosis 15 years ago. It is the inability to metabolize iron. Iron had been building up and storing in my body since birth. It was poisoning my organs. Treatment was therapeutic phlebotomies to reduce the iron stores. I gave over 100 pts of blood during the de-ironing process.
Late in the deironing I developed restless legs which got more severe as my iron levels dropped. Now 15 years later RLS is in full swing. Mornings are usually ok but if I try to relax anytime after noon it's impossible. It. really affecting my life BIG TIME.
I've been on clonipin, then requip and now mirapex which has been the best so far, but I find I have to up the dosage and take itearlier in the day.
I would like to hear from anyone having a similar set of problems

 
Old 03-20-2010, 08:26 PM   #2
Senior Veteran
(female)
 
Join Date: May 2008
Location: AZ
Posts: 2,253
javelina HB Userjavelina HB Userjavelina HB User
Re: hemochromatosis(iron overload) and RLS

I've just discovered that I appear to have iron overload too. I'm waiting for the results of my genetic testing now. Fortunately because I requested my doc test my ferritin for my hypothyroidism I am catching it early in the game (ferritin 379, TS 52%). I do have symptoms though and I suspect it has mainly affected my thyroid and adrenals or possibly my pituitary.
I used to have RLS for years but I find that magnesium citrate to bowel tolerance seems to help it greatly. Maybe it will help you too.
I've also heard over and over again about the home remedy of placing a bar of soap under the bottom sheet in your bed to cure RLS and cramps. I know it sounds goofy but the places I've read this are not all that crazy (People's Pharmacy for one). I also know it works for my aunt. No idea why but it may be worth a try.

 
Sponsors Lightbulb
   
Old 08-19-2010, 03:19 AM   #3
Newbie
(female)
 
Join Date: Aug 2010
Location: Burnt Hills, Saratoga County, NY
Posts: 2
cya2310 HB User
Re: hemochromatosis(iron overload) and RLS

Quote:
Originally Posted by Richard Blum View Post
I was diagnosed with heretitary hemochromatosis 15 years ago. It is the inability to metabolize iron. Iron had been building up and storing in my body since birth. It was poisoning my organs. Treatment was therapeutic phlebotomies to reduce the iron stores. I gave over 100 pts of blood during the de-ironing process.
Late in the deironing I developed restless legs which got more severe as my iron levels dropped. Now 15 years later RLS is in full swing. Mornings are usually ok but if I try to relax anytime after noon it's impossible. It. really affecting my life BIG TIME.
I've been on clonipin, then requip and now mirapex which has been the best so far, but I find I have to up the dosage and take itearlier in the day.
I would like to hear from anyone having a similar set of problems
Richard, I have hemochromatosis as well, diagnosed 30 years ago (my brother and I are the only ones in the family with it). I used to get RLS on and off, but in the past week it has been relentless, unable to sleep two nights in a row. When I was first diagnosed (30 yrs ago) I was getting phlebotomies approx 2-3 times per week and at that time they also gave me a shot of vitamin B-12 after every phelbotomy. A few months ago my iron levels were sky high again, and now getting phelbotomies once a week for 3 months in a row so far....this new hemotologist has not discussed or given my B-12 shots. I did ask him about it because I am so tired and achy.....yesterday I received a call from his office stating dr. wants me to have shots of B-12. I am hoping the shots will help with my RLS.......if not, I don't know what to do, it's killing me.

 
Old 09-17-2010, 07:47 AM   #4
Newbie
(female)
 
Join Date: Apr 2010
Posts: 6
bmor2u HB User
Re: hemochromatosis(iron overload) and RLS

As far as you know, is the DNA test the only defiitive test for carriers or those postive for hemochromatosis?

 
Old 12-09-2010, 12:02 AM   #5
Newbie
(female)
 
Join Date: Dec 2010
Location: Seattle, WA
Posts: 2
Seattlegirl03 HB User
Re: hemochromatosis (iron overload) and RLS

Wow! I have been on a road to discovery with my mother's health issues and now my fathers. First discovered Lyme disease (borellia bacteria infection) and now high tie to hemochromotosis. Woke up dreaming and thinking about it (it never leaves me). I was just thinking this morning, which came first, the chicken or the egg???

they both go hand in hand. The bacteria and parasites thrive on the iron/metals. Probably does not improve with blood letting, becuase they hide at the cellular level and build a "coat of armour", fibren and mucus. You need a lyme literate doctor in my opinion, who will treat the metals and bacteria/parasites.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Hemochromatosis dream77 Blood and Blood Vessel 21 06-23-2011 02:16 PM
Elevated H&H, Jak2 negative... Hemochromatosis,PV...Looking for answers!! akamaimama Open to All Other Health Topics 1 09-14-2009 07:41 PM
ferritin low, iron and B12 high, other labs off robine27 Anemia 21 03-01-2009 06:11 AM
Maximum safe daily dosage of iron supplement? blackomen Anemia 3 02-13-2009 06:58 PM
should i push for MD to test for hemochromatosis? jester123 Blood and Blood Vessel 17 04-21-2008 04:03 PM

Tags
anemia, augmentation, hemochromatosis, iron overload, rebound



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 05:18 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!