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Old 10-04-2008, 09:06 PM   #1
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alwayshurting13 HB User
suffering with hemochromatosis, am i alone.

I was diagnosed 2+ years ago, have my blood phlebotimized every 4 weeks, which is a pain i only weigh 94 lbs on a good day. I know its genetic but somehow my mother doesnt have it, and I dont speak with my biological father. I am currently going to a general physician, he found the disease, after 3 months of me living in a hospital with liver failure. I have a doctors appt. on the 13th of this month with an onconalgist 'whoa is that spelled wrong" anyway. just wanting to know if i'm that alone out there, if so many others have it like i hear, what are they doing. i am lost scared, not completely alone, i have a loving fiance', but he's no doctor. where both just trying to figure out what steps we should take next. what doctors to see. i already have severe arthritis, got over a mild pain pill addiction, am still currently on seboxone because im overaware of my addictive personality. any advice will be seriously taken, and overly appreciated. thank you.

 
Old 10-10-2008, 08:51 PM   #2
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myrtle74 HB User
Re: suffering with hemochromatosis, am i alone.

My doctors office just called me this morning informing me that the iron in my blood is high. They said it is 377. How high was your iron level when you were diagnosed? I am very worried. My liver enzymes are elevated and I also have a narrowed inferior vena cava right at the hepatic veins. I have an appt. set up for the 21st of this month with a liver transplant doctor to see if he can help me. They tell me that the narrowing is causing the swelling in my feet and legs. Also, did you ever have any trouble with itching? It is driving me crazy! I hope everything goes well for you. If you have any info, I would greatly appreciate it.

Myrtle

 
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Old 10-10-2008, 09:16 PM   #3
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alwayshurting13 HB User
Re: suffering with hemochromatosis, am i alone.

Dear Myrtel, please don't be alarmed by my franticness, my levels were 270, and i was already in the beginning of hidney failure, please don't panic the doctors for months thought i was depressed so i was on a large regime of anitpsychotics, that i didn't need. the medicanes caused my liver to shut down and that was when i jaundiced. I'm only 26 ur age has a lot to do with how strong your liver is, however the itching is the beginning of jaundice, i don't know what kind of medical care you can afford but in effort to starting feeling great, and the only treatment for the disease is theraputic phlebotomy. RUSH tomorrow to your nearest blood bank and do a regular 1 pint donation, if you have a history of anemia, or know you are anemic, don't worry, you need to bring your iron levels down immediately. please respond back as soon as you read this i will sit up all nite if need be. contact me so i can give you more detailed advice, and don't wait till the 21st, at the blood bank they will run a simple, much less complicated iron test. DON'T MENTION THE HEMOCHROMATOSIS YET!!! you need a prescription from your doctor and they do seem to appreciate the severity of what your going through. if you have any problems go to your local emergency room, explain your diagnosis, and emphasis the itching, also pay close attention to any change of color in your skin, or eyes. God bless you , please respond back, also my name is Loren.

 
Old 10-11-2008, 06:42 PM   #4
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Re: suffering with hemochromatosis, am i alone.

Thank you for responding to me. You are the only one that has so far. I have taken Depakote since I was 15, an anti-seizure medicine. They think that could have caused some of my liver damage or elevated my enzymes. I am hoping for the results of my hemochomatosis test on Monday. They put me on a solu-medrol dose pack last Thursday to help with the itching but it is not helping at all. There is so many other things that they are to check me for that I feel like I am going to go crazy. I have a colonoscopy scheduled for the 17th because they are concerned with some problems there. The appt. with the liver transplant doc on the 21st to find out something about my narrowed inferior vena cava. It is already narrowed 70% so I would hope they could do something. And I am scheduled to have a liver biopsy on the 22nd to test for any liver damage and to check and see if I have N.A.S.H. I am just ready for them to tell me something. I am tired of my feet and legs swelling and having no energy. it is hard for me to make through one shift.

I do not think that I am jaundice yet, but I have noticed alot of red raised spots on my body. I am red headed and light complected so it is kind of easy to spot something wrong.

Again, thank you so much for responding to me. Anymore information you have I would be so grateful for. God bless you, and I hope that you are doing well tonight.

Myrtle

Last edited by moderator2; 10-18-2008 at 05:49 AM. Reason: please do not state your profession, as per the posting policy

 
Old 10-11-2008, 07:46 PM   #5
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alwayshurting13 HB User
Re: suffering with hemochromatosis, am i alone.

Dearest Myrtle, the red spots are signs of liver failure, i had the same reaction. Gold bond medicated cream is a great temporary solution, it's soothing, but it will get worse. did you consider donating blood, i donate a pint every 4 weeks to keep my iron levels normal, however im constantly anemic and tired but it's dealable. at the beginning you may need to donate more regularly to get the iron where it should be. please go to an emergency room, the red spots are just the beginning, stop the depakote i was on that also 500 mgs a day along with seraqil and lithium. it accelerated my condition. if you know that your liver is already in trouble stop the meds or at least decrease your dosage. you've seen many things and liver failure is scary i'm praying for you i have been there it's scary but i survived and so will you. once again please go to an emergency room if your scared just know your not alone, God bless you, your in my prayers. L

Last edited by moderator2; 10-18-2008 at 05:48 AM. Reason: posted contact info

 
Old 10-17-2008, 04:24 PM   #6
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luvmybabies2 HB User
Re: suffering with hemochromatosis, am i alone.

No, you are not alone, I just found out today. I have not had any genetic testing done yet though, so I am not sure if mine is heretary (sp?) or not.
Can I ask your age? I am 36 years old and I was told that I am lucky because I am young and the liver has not been damaged yet (or at least it's not showing damage on the blood tests) I have not had a liver biopsy yet.
Please write back I would love to talk to others who are suffering from this condition as well.
Mia

Last edited by moderator2; 10-18-2008 at 05:51 AM.

 
Old 10-17-2008, 04:32 PM   #7
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luvmybabies2 HB User
Red face Re: suffering with hemochromatosis, am i alone.

Loren,
I am 36 yrs old and was just diagnosed today, no treatment plan has been established yet, so I am scared to death and do not know what to do.
( removed ) I am really scared and freaking out.
( removed )
Thanks so much.
MIa

Last edited by moderator2; 10-18-2008 at 05:47 AM. Reason: disallowed use - please read the posting rules

 
Old 10-18-2008, 06:08 AM   #8
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luvmybabies2 HB User
Re: suffering with hemochromatosis, am i alone.

I guess I can understand why off board contact should not be allowed, there are a lol of perverts out there who have bad intentions with women like me. It's sad though that people like us, who are rare and we have a rare disorder, that we cannot talk off the boards, because our condition is so unknown and nobody understands.

Does anyone know of message boards that are solely dedicated to this disease where we can meet off boards to discuss our illness.

Loren thanks for the info, and I will contact you later after breakfast.

Mia

 
Old 10-18-2008, 12:03 PM   #9
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luvmybabies2 HB User
Smile Re: suffering with hemochromatosis, am i alone.

Has anyone's hemochromatosis lead to hypothyroidism yet? Mine has, also does anyone with hemochromatosis notice a increase in the need to urinate? I go so often I think I am pregnant again sometimes. I just found out that people with this condition can not only have pains all over there body, for no apparent reason, but you can also have a significant increase in urination too.
Anyone else notice this yet?
I just love these message boards
Thanks
Mia

 
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