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What results did you get that indicated WD?
Ceruloplasim?
Serum Copper?
24 hr Urine Copper?
Liver Tests?
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What Test Results Indicate WD?
- By SearchingforAnswers
- Posted January 22, 2009 at 1:35 pm · 7 replies
- In Getting a diagnosis
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- By -Melissa-
- Posted January 22, 2009 at 6:50 pm
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1. ) Ceruloplasmin
2. ) 24 hour urine copper
3. ) Slit-lamp eye exam to check for Kayser-Fleisher Rings (done by an Ophthalmologist)
4. ) Liver biopsy
Liver enzymes and serum copper might also be beneficial to check, but in order to get a diagnosis, the top 4 are most common. WD patients can have normal liver function tests and still have WD.
- By SearchingforAnswers
- Posted January 22, 2009 at 10:36 pm
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Thanks for your reply Melissa,
What I would really like to find out is what kind of results anyone has gotten on these tests. My daughter got a 15.4 (reference range 17.9 - 53.3) on her first ceruloplasim test, and a 22 (reference range 22 - 50) on her second. Do you think she should do the 24 hr urine test or wait and do another ceruloplasim in the future? Any idea how to find a doctor (what kind of doctor?) or opthalmologist who knows about WD?
- By -Melissa-
- Posted January 22, 2009 at 10:50 pm
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I would have her doctor check a 24 hour urine copper to see how that turns out. It's better to rule things out vs. just waiting and seeing what happens. Ceruloplasmin levels can even be normal in WD patients. There are just so many different variables when it comes to different people and the diagnosis. If her family practice doctor would be willing to check these tests, I would start there. If not, try to see a gastroenterologist.
Who has checked the ceruloplasmin to begin with? What prompted the checking of the ceruloplasmin in the first place and how did you suspect WD? Has your daughter had her liver function tests checked?
An Ophthalmologist wouldn't have to be familiar with WD necessarily, but rather know how to check for the Kayser-Fleisher Rings by using a slit-lamp.
Best of luck!!
- By SearchingforAnswers
- Posted January 23, 2009 at 12:58 am
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I requested that my daughter's ob/gyn test her ceruloplasim after her hair analysis test showed that she was very high in copper. Since then, I've had two doctors and a nutritionist dismiss her (first) low ceruloplasim as meaningless.
My husband, my other daughter and myself also show very high copper on our hair analyses. My husband's bilirubin just came back very high, but his doctor said it was just benign Gilbert's Syndrome, and seemed reluctant to write him a script to get his ceruloplasim tested.
I don't understand why it seems so difficult to get these tests done. I realize that hair analysis testing may not get much credit with tradtional doctors, so I don't usually mention it. I am not an alarmist, but from reading everyone's stories (thank you for sharing) it seems important that I keep trying to be proactive about this.
- By -Melissa-
- Posted January 23, 2009 at 10:59 pm
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I'm not sure about hair analysis and copper content. I would probably look for a different doctor though. I hope your husband's doctor will rule out other options and check other tests to make sure that its Gilbert Syndrome and not something more serious.
You could also try contacting the WDA to see if they can give you any advice on the hair copper analysis or possibly recommend a good doctor in your area.
- By Heron
- Posted January 24, 2009 at 1:14 am
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Welcome to the list. I hope you find the answers you need soon.
My ceruloplasmin has varied from 7 to 16. The 16 is the most recent result, and because they have recently changed the reference range at the lab where it was tested, it was within normal limits. When I was diagnosed, it was 15 - only a little bit low. The doctor went on to test urine copper, which was very high, serum copper, which was low, and KF rings, which were present but very mild.
He was motivated to test me, because my liver symptoms had become acute. But it does not make sense to wait until they become acute to do the tests. Now I have cirrhosis which could have been prevented if I had been diagnosed sooner.
So as Melissa says, I'd suggest looking for a different doctor.
- By SearchingforAnswers
- Posted January 24, 2009 at 9:59 am
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Thank you so much for your replies. You both made very helpful points
I've been pushing my daughter's doctor for the 24 hr copper test with no result - you know, she's wants to wait to discuss it at her next appt - weeks away. My biggest concern is that my daughter (who is 18) wants to go on birth control pills (now), and I'm afraid that they will skew her results.
I know bcp's have copper in them - does anyone know if are they contra-indicated for women with WD? Wouldn't taking zinc make them less effective? Has anyone with WD noticed any side-effects from taking them?
Thanks to all!
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