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Low or normal 24 hour urine copper levels

Rponka
Nov 15, 2016 • 3:11 PM
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Hello, I am wondering if anyone has had low or normal 24 hour urine copper levels and still had a diagnosis of Wilson's disease. My 19 year old son is in the diagnostic stage of Wilson's. His presentation is psychiAtric in nature, pretty much a combination fluctuation of almost all mental health issues. No outright hallucinations that I know of but delusional bizarre thinking, withdrawal, isolation, cognitive decline. His cereloplasmin is slightly low, serum CU slightly low, slight elevated liver enzymes, no keiser fleisher rings, 1st 24 hr urine came back low. 2nd was normal. He does not eat or drink regularly so I've wondered if poor appetite could affect his urine CU levels as he is not taking a lot of food in so maybe his urine levels are lower? We have an appt in MI at Univ MI Wilson's disease clinic in one week. Hoping and praying for answers.

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Space_Oddity
Nov 16, 2016 • 1:13 AM

Rponka, I had low urine copper levels and I have Wilson's. It defies explanation. My doctor can't explain it either.

I am definitely a neuropsych type. My brain is now turned off. I do miss my creativity and spontaneity, though.

I just enrolled in a registry sponsored by a drug company. I get blood taken once a month and urine more frequently. I am waiting to get my urine results back.

Good luck to you and your son. It looks like you may have caught it early.

Space_Oddity

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Rponka
Nov 16, 2016 • 1:29 AM

Hello, Thank you for responding so soon. This website is awesome for something like this that is so rare and hard to diagnose. What were your psych symptoms? Did you feel different all your life or did it only start closer to diagnosis? How did your dr know to check for Wilson's? How did you get ultimate diagnosis? Did it affect your liver at all? I read that you had a twitch. Did the neuro issues stArt after the psych issues? Thank you so much. Rponka

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drdokv
Nov 18, 2016 • 4:20 AM

Dear Rpandika and Space-oddity,

I think you are both doing yourself a disservice by wanting to diagnose yourself with WD or misdiagnosing WD.

No to Rpondika , WD can not be diagnosed with normal 24 hr urine Cu. you could repeat it and ensuring its measured at good reference lab. See possibilities later. Some psych problems have no cause other than behavior , best treated with psychotherapy and possible change of lifestyle?

People like to have a diagnosis for their problems.

Space- oddity , you need more than foot tremor and what may appear to be KF rings? Anything else? It could MS? Early brain dementia ? Parkinson's"s , A vitamin defeciency ? Thyroid ? Neuro- Sypilis? For example all treatable!

Ask me anything else Space oddity what else diagnose findings of WD?

Dr Vestal, retired

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drdokv
Nov 18, 2016 • 4:26 AM
In reply to drdokv's comment

Rapodka, You need at least 2 of these -very elevated urine Cu, KF rings diagnosed by experienced ophthalmologist , andor liver biopsy- no ands, ifs or buts.

Dr Vestal

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Cooperdonna
Nov 19, 2016 • 12:16 AM

Rponka...

Dr Kirk is Mis-informed.

It's very possible to have WD with a normal copper 24hr urine test. Not only am I one of them, there are countless others here on Inspire.

Although it's not common, it is reported.

There is currently no test that can exclude WD. There are only tests that can include it. Every WD test has a small percentage of fail. Liver biopsies, cerulplasmin , genetic testing, 24 hr urine, ... they ALL have living patients where the rule has not applied to them.

This site can be filled with the best information available , but can also be very confusing because of ill information being stated.

Best of luck to you!

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Rponka
Nov 19, 2016 • 1:33 AM

Hello, Thank you for your responses. It definitely does seem like Wilsons can be very difficult to diagnose. After our separation My sons father said he had Wilson's disease and he had a lot of psychiatric/ addiction issues. He was not under the care of a doctor nor on any medication for it as far as I know. He took his own life this past February. Unfortunately he was never treated for it. When he told us about it he said the doctor told him that it wasn't affecting his liver and he could control it with his diet. Unfortunately he didn't realize the seriousness of it. By chance I saw Wilsons as a cause of mental illness in a research paper and remembered his dad saying that he had it. That is where I started with getting tests done on my son. We also now think that my ex husbands mom may have died of Wilsons. She died at 65 after a 5 year battle with an undiagnosed mysterious neurological disease which resembled ALS or WIlsons disease. I don't think she was ever checked for Wilsons. So this is not just some jumping on the Wilsons Disease bandwagon as an excuse for my sons mental illness. There is definite reason to be looking in this direction. I am in a battle for my son's life and I am making informed intelligent decisions and realize that the way this disease affects everyone in a different way that it has to show up differently in different tests.

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Space_Oddity
Nov 19, 2016 • 2:15 PM
In reply to drdokv's comment

Dr. Vestal,

Thank goodness we have a pathologist as a contributor! I have read your posts before and you have a lot of credibility.

I am not speculating on my diagnosis...I was diagnosed by a very competent neurologist at Mount Auburn Hospital in Cambridge, MA. As soon as my low ceruloplasmin level came back, I was sent to see the ophthalmologist at Mount Auburn. K-F rings were present - he told me this within the first ten seconds of the eye exam.

I already had a Wilson's algorithm published by the Mayo Clinic. When the K-F rings were observed, I immediately diagnosed myself with Wilson's Disease. I didn't wait for my neurologist to contact me. But shortly thereafter he did. I was the first Wilson's patient he had diagnosed in his entire career.

My Wilson's diagnosis was accidental...please read on. My neurologist could not explain my foot tremor. But I could.

I am convinced my foot tremor is a drug side effect. The drug is Vyvanse 60 mg. Vyvanse is an amphetamine pro-drug used for ADHD and off-label uses like depression. It can't be abused, even by someone like me (a scientist with 35 years experience in pharmaceuticals). I don't have ADHD but have been depressed for many years. I wonder if my depression was caused by my Wilson's. My doctor wouldn't continue to prescribe my Vyvanse unless I had the foot tremor evaluated.

You will find this interesting...the foot tremor is predictable. It usually begins about 8 hours after I take the Vyvanse. The onset coincides with peak therapeutic effect. I don't wake up with the tremor or go to sleep with it. It's not bilateral, which is proof that I'm not symmetrical (no human is). The tremor looks a lot like tardive dyskinesia (TD). I have seen TD in a family member who took Prolixin (fluphenazine) oral and IM (depot) for many years.

This is my explanation for the tremor. My tremor confounded both my doctor and my neurologist. Neurologically I was perfect (brain MRI, physical exam). So my neurologist decided to check ceruloplasmin and it came in low...twice! I got lucky for sure.

I now take Syprine (500 mg x 2) and Galzin (25 mg x 2) each day. I began in May 2016. My Wilson's-related psych symptoms have greatly improved. But guess what? I still have my foot tremor.

More to follow.

Space Oddity

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drdokv
Nov 19, 2016 • 3:18 PM

People frequently don't collect their 24 hr properly or use right container or a regional reference lab, so there are reasons for Cooperdumma and others' results written about here- not having a high 24 hr urine Cu. Liver biopsy may not be stained properly or left out of formalin too long or interpreted by competent pathologist nor KF ring seen by competent Ophthalmologist with a slit lamp. Drs make mistakes like many of the experts here? Pathologists know everything about everything , but, too late!

Unfortunately, I had a knack for inappropriate behavior, too! I was dam good at Neurology, but, was scared of the 1st post grad year of Internal Medicine. I wish I could restart.

Dr Vestal

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Cooperdonna
Nov 19, 2016 • 5:09 PM

Rponka,

In response to what Dr vestal just said... it's possible to have a low reading of urinary copper ( without a lab error) and still have Wilson's disease.

Ask some of those that oversee the posts here on Inspire. They have personally agreed on other posts and it is indeed a fact.

Don't be sidetracked by temperamental temper tantrums that are well documented here on Inspire. Read posts here on Inspire, you can and will deduce for yourself who are the ones posting relevant up to date information that is capable of saving lives.

Once again ... a NORMAL 24 hr urine specimen does not rule out WD. !!

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Cooperdonna
Nov 19, 2016 • 6:40 PM

To finally debunk Dr Retired Vestal...

Here are the words of Catery on another post here on Inspire. She is one of the founders of the WDA ....and oversees the misstatements of others. She explicitly explains that a normal 24 hr urine copper does not necessarily rule out WD!

Sorry Dr vestal. (Possibly you could retract your childish name calling)...

caterry's Avatar caterry

JULY 18, 2016 AT 9:44 PM REPLY 7231455

AnonAnon1,

You're correct -- penicillamine challenge is used mainly in children, but a normal 24 hour urine copper does not necessarily rule out WD. Diagnosis of WD can be very difficult. You might need a liver biopsy to confirm the diagnosis

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drdokv
Nov 19, 2016 • 10:47 PM

Copperdonna, I feel it my duty to explain there are many , detailed, specific requirements to get an accurate 24 urine Cu, KF ring exam and liver biopsy interpretation . Mistakes are made more due to an ignorance or unfamiliarity with very, very rarely requests to eye Drs, pathologists, and labs. So, yes, a normal urine copper result is quite possible in undiagnosed WD . But, if the 24 hr urine copper is collected properly , sent to a lab that performs the test properly and routinely anaylizes the copper level, then, the copper level will be high - unless perhaps severe kidney dysfunction?

Why are you so adamantly in disagreement ?

Dr Vestal

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Cooperdonna
Nov 19, 2016 • 11:28 PM

Dr vestal

I feel it is my duty to still point out that you are dead wrong.

What you are saying is ... if the lab tests it properly it WILL be high. And what I'm saying is that there are a small percentage of people that do NOT excrete >100 in copper from a 24 hr sample. And they have the disease. Their diagnosis is formed from other tests that give the definitive diagnosis.

Not everyone Excretes copper , diagnosed or undiagnosed.

Period. End of argument.

I'm not disagreeing for the sake of argueing. I'm disagreeing so that the accurate information is obtained from those reading....and correct information leads to more a timely diagnosis, hence capable of saving someone's life. People take this information to their doctor appts. For that reason alone it is imperative that they have the correct info for their doc ( not dok)....

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drdokv
Nov 20, 2016 • 12:18 AM

what I have been writing is it is possible to have normal 24 hr urine copper and WD. Just like it would be in the presence or absence of KF rings or improperly performed liver biopsy and WD. These questionable results are more likely to occur in a newly presenting person with undiagnosed WD. Or a sibling of a known WD person who has asymptomatic WD?

But, the rule for the majority is to have 2 of 3 concrete , properly performed, repeated tests for WD to be WD.

Dr Vestal, MD Board Certified Pathologist

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Cooperdonna
Nov 20, 2016 • 2:01 AM

Dr Kirk.

What you just said differs greatly from your first statement a few posts ago.

You said this....

No to Rpondika , WD can not be diagnosed with normal 24 hr urine Cu. you could repeat it and ensuring its measured at good reference lab

Dok Kirk,

I have followed your commentary for many years. I do not doubt that you have pathology knowledge. But it is how you respond to newcomers here on inspire that usually un-nerves me.

You usually doubt that any new poster has Wilson's disease. You usually accuse them of trying to diagnose themselves without the proper knowledge. You answer them with a set of questions that goes on endlessly... including many other diseases and problems that you think they might have.

Personally I think that any new poster that appears on inspire has been through the doctoring process for a very long time without any answers. They come here desperate. They are looking for people to help them get answers.

The fact that Wilson's disease has so many uncertainties in the way that it's diagnose lends itself to much mis-information on the part of those joining the conversation. This tends to be very confusing for the person who is posting trying to get answers.

Many times the patient actually knows more about Wilson's disease then the doctors do. There are patients that have to correct the doctors for their mistakes .... I like to help those in that particular position.

I'm sorry for the disagreement to Dr. Kirk on this post. But the way that you answered it now compared to the way that you answered it the first time differs greatly .

my advice is to you is to choose your words more carefully, don't name call, therefore you won't have problems with others...

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Space_Oddity
Nov 20, 2016 • 11:13 AM

Good morning to all,

Here are some of my lab results from late April 2016 and May 2016:

Ceruloplasmin 9 mg/dl (L) ...18-36 mg/dl is the reference range

Zinc 79 mcg/dl...normal

Serum copper 41 mcg/dl (L) ...70-175 mcg/dl is the reference range

Ceruloplasmin 10 mg/dl (L) ...repeated test

Urine copper 24 hour 14 mcg/24 hr (L)...15-60 mcg/hr is the reference range

Ceruloplasmin 11 mg/dl (L) ...repeated test

The 24 hour urine copper was low. I was expecting high. This test was performed during my initial workup and before I started on Syprine and Galzin. I began to wonder if I had Wilson's but then we got the serum copper results.

I just enrolled in this clinical trial. I am waiting for my 24 hour urine copper results to come back. The sample was collected having been on Syprine and Galzin for 5 months.

https://clinicaltrials.gov/ct2/show/NCT02763215?term=wilsons+disease&rank=4

Space Oddity

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