I was really getting sick for a while. I never got as bad as some of the other entries. I think that is becuase I was already avoiding foods high in copper. I had a ceruloplasmin of 17.1 and a copper serum of 83. I don't have those eye rings or losing balance. I looked up the Wilson disease diet and took some zinc and my head feels better and I sleep through the night. I am in a weird limbo right now. I'm afraid to go back to the Dr. because every time it seems like a waste of time. I'm always insisting I'm sick and the Dr.s don't do anything. My 24 hour copper came to just 2.3 so that is low. I might have some kind of copper overload but not Wilson's. Does anyone know how I can find a Dr. in the Harrisburg or York Pennsylvania area that could sort this out for me?
Thank you for any help
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Improving without professional help
- By yorksoldat
- Posted February 4, 2009 at 1:57 pm · 6 replies
- In Finding a doctor
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- By Heron
- Posted February 4, 2009 at 9:58 pm
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Hi yorksoldat,
Welcome to the list.
What were the reference values for your tests? Depending what they were, your ceruloplasmin and copper serum could both be within normal limits. And did a doctor order the 24 hour urine? What did he or she say about the results?
I don't know a doctor in Harrisburg. The WD site lists one in Pittsburgh though:
Benjamin Shneider, M.D.
Director of Pediatric Hepatology
Children's Hospital Pittsbugh
Division of Gastroenterology
3705 Fifth Avenue
Pittsburgh, PA 15213
Phone: 412-692-5180
Fax: 412-692-7355
E-mail: benjamin.schneider@chp.edu
- By sismeliss
- Posted February 4, 2009 at 10:08 pm
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Dr. Shneider is our son's doctor. He is very good, but as far as I know, he is in pediatrics. You could check out UPMC...Children's is a part of them. Would be a bit of a drive for you though. Best of luck!
- By yorksoldat
- Posted February 5, 2009 at 8:53 am
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Thank you for your response. The results were
copper, serum 83 ref range 70-155
ceruloplasmin 17.1 16.2-35.6
24 hour urine 2.3 2-50
The Drs never say anything to me. A nurse leaves an automated message saying everything is normal. Then I go and get the results. The tests also say other results are low like thyroid and white blood count.
Should I see a hepatologist whatever that is? I see that Dr Schneider is one.
Thank you for you time
Ed
- By Heron
- Posted February 5, 2009 at 9:55 pm
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Hi, Ed -
A hepatologist is a liver specialist.
According to the numbers you've stated, the nurse is correct in saying that the serum copper, copper urine, and 24 hour urine are normal, even though ceruloplasmin is at the low end of normal. They would usually not be normal in someone with WD, especially untreated.
Not being a doctor, I don't know much about other things that might cause you to have low thyroid and white blood cell results.
I hope that you find out what's wrong soon, or that it clears up.
Ann
Ann
- By yorksoldat
- Posted February 6, 2009 at 10:43 am
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I read that there are different mutations. I think that because I don't have it as bad as the others and also because My mother discovered foods that make it less pronounced like avoiding chocolate I am in much better shape than others. I still don't know if I have it or not but I am 100 percent certain that foods high in copper make me sick. Hundreds of times I tell myself that this one piece of chocolate won't hurt. Then I end up becoming a serious mental case. Before this didn't happen. However I think my body is pretty toxic so I'm very sensitive to foods right now. I'm going to see if I can't go see a hepatologist soon.
Thanks for your help
- By SearchingforAnswers
- Posted February 7, 2009 at 10:07 am
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Yorksoldat -
Thank you for sharing your experience. I believe that copper toxicity is far more common than people realize (whether the diagnosis is WD or not), that it can have a strong effect on our brain chemistry, and that there are certain things we do (like drink beer, eat chocolate or take supplements) that make it better or worse on a daily basis. You may also want to consider having your water tested, because we can absorb copper through our skin, too.
My two daughters, my husband and myself are all copper toxic (according to our hair analyses) and my older daughter has low(-ish) ceruloplasim. I believe a major variable that make some people more susceptible than others is adrenal fatigue, since the adrenal glands send the message to the liver to make ceruloplasim. I know what it's like to not feel like myself at times and I have watched my daughter struggle, too. I am waiting to receive a protocol of supplements to start her on, and will see how much they help.
Googling Dr Larry Wilson and copper toxicity will provide you with a wealth of information.
Best of luck and please keep us posted on your progress
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