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Kidney Damage and Very Low copper levels

kc1392jesus
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I was diagnosed with kidney damage they aren't sure why yet, however, I loss protein my kidneys are just dumpping it out. I was diagnosed with wilson's diease at the age of 8 years old and i'm almost 23 years old. I was told last week that my copper levels are way to low so low that my body is starting to have recations from it. My family is kind of confused because I thought low copper was always good. My neurologist said its not good at all that its that low. Has anyone else had any of these problems were trying to get some answers? They have switched my medication over the years three times and now i'm currently on syprine.

Explore topics in this discussion:

Zinc acetate Wilson disease Syprine Proteinuria

4 replies

-Melissa-

Hello,

While controlled copper levels are good, sometimes they can get too low with over chelating. With WD it is good to have your copper levels under control, but your body still needs SOME copper in order to function properly. If you begin to deplete your body from all copper, it can have negative effects. How low is your copper level? I assume that if your doctor is the one that told you that your copper level is too low, that they also told you how to adjust your medication so that you aren't being over chelated?

Here's a link to a brochure on the WDA website that gives the target result ranges for being on a chelator or being on zinc.
http://www.wilsonsdisease.org/pdfs/WDAClinicalToolsBrochure.pdf

Do you routinely get your 24 hour urine copper checked? Serum Copper? If so, you can see which ranges you fall into on that brochure. It might give you a better idea of what your doctor is telling you about your copper levels.

If you need any other help with this, another great resourse to get in touch with is Mary Graper, the president of the Wilson's Disease Association. Her email address is mltgraper@aol.com

Best of luck to you!

~Melissa

kc1392jesus

You know what i forgot the count i'll get the lab results from my physician. We normally keep a close eye on it but i do remember on the results it was flaged very low. I haven't had a 24 hour in over two years i think. I get lab work done every 3 months but i've had it done every week for the last two months because i've been in the hospital and the count was low then went up and then dropped to very low. Yeah they haven't ajusted anything yet because they are waiting on UCLA they are trying to figure out why its doing this. I'll look at the information you sent. Thanks this helps me alot.

-Melissa-

Well if it's your serum copper thats low, that is probably "normal" for us WDers. My serum copper is always low too. I think for us they'd like our serum copper level to be in the range of 5-15. The only real way to know how your copper levels are doing is to have a 24 hour urine copper test done. I would ask your physician to order one. I think it would also be beneficial to have your 24 hour urine done annually, just to make sure things are ok. I believe it lists that on the link that I gave you for "guidelines" to follow.

Have you been hospitalized due to your copper levels being too low or are you having other levels that are also too low?

One other thing I just read on that link I gave you is that a "side effect" from Trientine (Syprine) is it can cause proteinuria (which is protein in the urine). So maybe that is why they found the protein in your urine. Have you been on this medication very long? Maybe you'll have to end up switching again. Have you tried the Galzin (Zinc Acetate)?

I'm sorry you've not been feeling well lately...I hope your doctor can figure things out and get things under control for you again.

~Melissa

Sunnyone

My 24 hour urine copper output is very low plus my free copper the reason be is because I was on pencillamine for 30 years, I am on 50 mg of zinc gluconate now and have cut back to two aday for the time being, I have my bloodwork etc. done every three-four months...my neurologist likes for my free copper to be anywhere in the 10-15 range....so far my kidneys have not been affected by my low readings ...maybe you need to come off of syprine and go on zinc only...best of luck.

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