I have recently spent many many hours in emergency for pain in the liver area, only to be sent home with nothing. They found metal in my liver on the cat scan (which was repeated because they didn't believe it). Has anyone else had this strange finding? The only thing I have been able to find was that there was that there may be too much copper or heavy metals in my blood. Any help would be wonderful as they have no idea right now.
Also, what has lead me to believe that it may be copper is my diet, I eat tons of nuts on a daily basis and a lot of soy. Also I know that the copper level in our water is very high as well. Another strange thing that they found was that within 3 days my hematacrit raised 3 points and my red blood count went up as well.
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Cat scan findings
- By starryeyes
- Posted May 10, 2008 at 8:46 pm · 7 replies
- In Getting a diagnosis
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- By doonie
- Posted May 12, 2008 at 1:53 pm
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Hi,
I suggest you call the Wilson's Disease Association or look on their website. They can help you find a doctor.
When my daughter's neurologist suspected Wilson's, I was referred to a metabolic Diease geneticist. The Wilson's Disease website has a list of doctors who are knowledgeable in Wilson's. I e-mailed one, and he was very helpful.
Wilson's Disease involves a build up of copper in the body - but you need someone who knows what he/she is talking about.
You need the right specialist.
Best Wishes and good luck!
- By mgraper1
- Posted May 14, 2008 at 7:48 am
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starryeyes
Yes, please do contact us at 888-264-1450. Where do you live?
Mary
WDA
- By starryeyes
- Posted May 14, 2008 at 10:49 am
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I live in Southern California. Thankfully, I just had blood drawn yesterday for WD, hemochromatosis, and heavy metal toxicity. Sounds like a lot! Hopefully it will tell something! If it does indeed show a possibility of WD I don't think there are any specialists nearby, so I will probably ask my dr to consult with one of the specialists on the WDA site. I trust my doctor a lot (aside from jokes about possible alien abduction and metal in my liver) he's a great guy.
- By doonie
- Posted May 15, 2008 at 1:30 pm
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Hi,
I also live in Southern California.
There's a neurologist who specializes in WD at UCLA. He's on the WDA website.
I have e-mailed him, he is really nice.
Good luck!
- By starryeyes
- Posted May 19, 2008 at 2:08 am
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Well, labs came back with copper at 97 and ceruloplasmin at 25. I'm pretty sure those are well within normal limits. Some others came back a little off but nothing to be alarmed about. All my heavy metals came back normal as well. Odd to feel a bit disappointed that they can find nothing wrong.
Thanks all for your comments!
- By doonie
- Posted May 21, 2008 at 1:27 am
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Hi,
I went through something similar - on the one hand, you want to know why you have these symptoms, on the other hand it's good to rule out serious conditions. Then you are left wondering, so why is this going on?
We are still testing our daughter - probably won't know why she has her symptoms, we at this point can only treat her with physical and occupational therapy and monitor her progress.
As much as science and doctors know, there's so much unexplained.
- By pedrichards
- Posted June 1, 2009 at 4:44 pm
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I've seen two formulas for calculating "free" or "non-ceruloplasmin bound" copper
with conversion values of 3.3
97 - (25x3.3)= 97-82.5 = 14.5
where something above 10 is considered high
(P. Ferenci: ) http://sadieo.ucsf.edu/course/things/pre-2005/Ferenci.pdf "Wilson's Disease: Clinics in Liver Disease"
or, of 3
97 - (25x3) = 97 - 75 = 22
where anything above 15 is considered high
(M, Schilsky: http://www.wilsonsdisease.org/images/Monitoring.pdf) WDA Association FAQ: Monitoring
So, though serum ceruloplasmin and serum copper are both within reference range, the arguably more important calculation, the "free copper" that which is not bound to ceruloplasmin, is not exactly that.
I am interested in what has happened to you; please follow up on your post.
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