Comments on: And the Damage Done: Hemochromatosis recap http://cobbsblog.com/blog/and-the-damage-done-hemochromatosis-recap/ Fresh perspective, forward thinking, informed by the past Mon, 17 Oct 2011 11:58:52 +0000 hourly 1 http://wordpress.org/?v=3.0.5 By: Racheal http://cobbsblog.com/blog/and-the-damage-done-hemochromatosis-recap/comment-page-1/#comment-1059 Racheal Thu, 22 Sep 2011 23:01:11 +0000 http://cobbsblog.com/blog/?p=611#comment-1059 I just want to say thank you for your blog. My husband was diagnosed about 2 years ago and it has been a struggle to get any doctors to listen to what he is going through they all keep saying this is an old persons disease and minimizing all his symptoms as if they mean nothing I am so frustrated and do not know what to do anymore!!! I just want to say thank you for your blog. My husband was diagnosed about 2 years ago and it has been a struggle to get any doctors to listen to what he is going through they all keep saying this is an old persons disease and minimizing all his symptoms as if they mean nothing I am so frustrated and do not know what to do anymore!!!

]]> By: Karen http://cobbsblog.com/blog/and-the-damage-done-hemochromatosis-recap/comment-page-1/#comment-1025 Karen Sun, 08 May 2011 15:43:11 +0000 http://cobbsblog.com/blog/?p=611#comment-1025 Hi - My heart goes out to you. Your blog is a GodSend to me, because I have and am still suffering from everything in your blog. The most upsetting response to this whole situation is having "medical professionals", who are not familiar with HH, tell you that it's all in your head. I feel like I have been handed a death sentence with no appeals available and there is not a night that goes by that I don't pray that God just let's me go. But, since I am still here tells me that God is not done with me yet. I refuse to go to a "medical professional" because of the minimization of the illness and them almost killing me through overmedications and unnecessary tests. So, as bad as this "condition" is, my heart lightens up a little when I read blogs like this, because I know I'm not alone. Why does everyone refuse to help you? Why do "professionals" (i use this term loosely) minimize this tragic condition? Where do I go from here? I'm just lost and need to vent, so thank you for posting your blog. Hi – My heart goes out to you. Your blog is a GodSend to me, because I have and am still suffering from everything in your blog.

The most upsetting response to this whole situation is having “medical professionals”, who are not familiar with HH, tell you that it’s all in your head.

I feel like I have been handed a death sentence with no appeals available and there is not a night that goes by that I don’t pray that God just let’s me go. But, since I am still here tells me that God is not done with me yet.

I refuse to go to a “medical professional” because of the minimization of the illness and them almost killing me through overmedications and unnecessary tests. So, as bad as this “condition” is, my heart lightens up a little when I read blogs like this, because I know I’m not alone.

Why does everyone refuse to help you? Why do “professionals” (i use this term loosely) minimize this tragic condition? Where do I go from here?

I’m just lost and need to vent, so thank you for posting your blog.

]]> By: Aimee http://cobbsblog.com/blog/and-the-damage-done-hemochromatosis-recap/comment-page-1/#comment-1022 Aimee Wed, 04 May 2011 01:26:21 +0000 http://cobbsblog.com/blog/?p=611#comment-1022 Hi Stephen and Chey...I would love to hear your thoughts on my symptoms that I list in my blog. I was the youngest diagnosed in my area over 12 years ago, and I am just now suffering from all of the joint pain. I thought I was going crazy as I am only 36, and no one could link it to my HH. No amount of research I did added up to my symptoms until I found Hashimoto's disease. It took me 10 months to convince a doctor that my thyroid was having problems and that they needed to treat me. Thanks again for this blog. Hi Stephen and Chey…I would love to hear your thoughts on my symptoms that I list in my blog. I was the youngest diagnosed in my area over 12 years ago, and I am just now suffering from all of the joint pain. I thought I was going crazy as I am only 36, and no one could link it to my HH. No amount of research I did added up to my symptoms until I found Hashimoto’s disease. It took me 10 months to convince a doctor that my thyroid was having problems and that they needed to treat me. Thanks again for this blog.

]]> By: n8whit http://cobbsblog.com/blog/and-the-damage-done-hemochromatosis-recap/comment-page-1/#comment-1012 n8whit Sat, 26 Mar 2011 17:35:35 +0000 http://cobbsblog.com/blog/?p=611#comment-1012 Mike. The reason your joints do not "feel" any better is because the bone marrow turning iron into blood (lost through phlebotomy) happens around the ends of the bones (my understanding of research). So it is in the joins that you will feel the effects of your body FINALLY using the iron stores for some good. I am a Soldier, not a physician. But I have read a lot on this disorder since my family has it in their genes. Mike. The reason your joints do not “feel” any better is because the bone marrow turning iron into blood (lost through phlebotomy) happens around the ends of the bones (my understanding of research). So it is in the joins that you will feel the effects of your body FINALLY using the iron stores for some good.

I am a Soldier, not a physician. But I have read a lot on this disorder since my family has it in their genes.

]]> By: Don Cameron http://cobbsblog.com/blog/and-the-damage-done-hemochromatosis-recap/comment-page-1/#comment-996 Don Cameron Tue, 01 Mar 2011 18:00:50 +0000 http://cobbsblog.com/blog/?p=611#comment-996 I too have HH, diagnosed finally at 55. I had been complaining to my Doctor for years about pain in my knees and hands but nothing showed up on x-rays and my tests for RA always came back negative. It wasn't until my liver numbers rose - and I saw a gastroenterologist - that a ferratin test was done. My ferratin level was 6855. Luckily, it only took eight months of twice weekly phlebotomies to bring me down to below 50, but I have also been diagnosed with cirrhosis. (I must admit that I was a bit of a drinker, especially after my wife died from cancer, but those days are done.) I have been on a maintenance schedule for another eight months but still am in a lot of pain from my hands, knees and hips. I don't know if that will ever go away. A Rhumatologist that I saw just shrugged and said "You have Hemochromatosis, I can't help you" and left the room. Nice. Don I too have HH, diagnosed finally at 55. I had been complaining to my Doctor for years about pain in my knees and hands but nothing showed up on x-rays and my tests for RA always came back negative. It wasn’t until my liver numbers rose – and I saw a gastroenterologist – that a ferratin test was done. My ferratin level was 6855.
Luckily, it only took eight months of twice weekly phlebotomies to bring me down to below 50, but I have also been diagnosed with cirrhosis. (I must admit that I was a bit of a drinker, especially after my wife died from cancer, but those days are done.)
I have been on a maintenance schedule for another eight months but still am in a lot of pain from my hands, knees and hips. I don’t know if that will ever go away. A Rhumatologist that I saw just shrugged and said “You have Hemochromatosis, I can’t help you” and left the room. Nice.
Don

]]> By: Michael Williams http://cobbsblog.com/blog/and-the-damage-done-hemochromatosis-recap/comment-page-1/#comment-987 Michael Williams Fri, 21 Jan 2011 23:20:36 +0000 http://cobbsblog.com/blog/?p=611#comment-987 Hey Joe, one thing that concerns me about your post is your use of Aspirin. HH is tough on the GI system, and if you have HH aspirin is very bad for your GI system. Something to consider should you be diagnosed. Hey Joe, one thing that concerns me about your post is your use of Aspirin. HH is tough on the GI system, and if you have HH aspirin is very bad for your GI system. Something to consider should you be diagnosed.

]]> By: Michael Williams http://cobbsblog.com/blog/and-the-damage-done-hemochromatosis-recap/comment-page-1/#comment-986 Michael Williams Fri, 21 Jan 2011 23:17:01 +0000 http://cobbsblog.com/blog/?p=611#comment-986 Chey, Thanks for the reply. I have had a Dr. that tells me all of my problems are very like from the HH. She also told me that the damage I have is irreversable and that even chelation won't fix that. Phelebotomies are really are only answer for keeping it from getting worse, but even that wreaks havoc on the body after awhile. I do know there is a place in Virginia that does Chelation as my therapists husband had it done there. If you want to communicate directly my email is miked1@comcast.net Chey,

Thanks for the reply. I have had a Dr. that tells me all of my problems are very like from the HH. She also told me that the damage I have is irreversable and that even chelation won’t fix that. Phelebotomies are really are only answer for keeping it from getting worse, but even that wreaks havoc on the body after awhile. I do know there is a place in Virginia that does Chelation as my therapists husband had it done there. If you want to communicate directly my email is miked1@comcast.net

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