copper makes me feel worse, but i don't have Wilson's disease

[uni]

As the title says, copper supplementation makes me feel worse despite testing that shows I don't have Wilson's disease. My ceruloplasmin and serum copper levels are both on the low side repeatedly. Serum copper is within range, on the low side. Ceruloplasmin was below normal on two tests, and within range (on the low side) on one test.

My liver function is normal except a slightly elevated ALP, but this is not really significant.

My 24-urine copper was 18 mcg, which is well within the limits for a normal patient. Wilson's disease patients usually have 24 urinary copper levels of several hundred mcgs.

I had an MRI done which the neurologist said was OK. I didn't get to thoroughly read the report, but I trust he would have told me if the radiologist saw anything.

When I take copper, I feel worse - slightly nauseous, increase brain fog, more "out of it".

My blood tests show that I should benefit from copper supplementation. I'm wondering if there is something to the whole "biounavailable copper" that some alternative med practitioners talk about. I don't know what to do - I don't think I'm going to continue with copper supplementation due to my symptoms, but it doesn't really make sense.

 

[nanonug]

When I take copper, I feel worse - slightly nauseous, increase brain fog, more "out of it".

Given that copper and zing tend to be in a constant state of friendly competition, maybe you are just deficient in zinc and copper exacerbates the symptoms associated with zinc deficiency? Just a thought.

 

[Gavman]

I agree with nanonug. The common zinc deficiency test seems to be white spots on the nails (not the half circle at the bottom but on the nail). But i'd look at the other possible factors, i've had low zinc and dont have white spots on the nails.

 

[richvank]

Hi, uni.

If you have had a standard blood metabolic panel, you can look to see if alkaline phosphatase activity is on the low side of the mean of the reference range. If so, that is an indicator of zinc deficiency, because alkaline phosphatase is a zinc-requiring enzyme. The docs usually don't pay attention to low-normal values of this enzyme activity. They are looking for elevated values, as a sign of liver problems.

Best regards,

Rich

 

[TrixieStix]

As the title says, copper supplementation makes me feel worse despite testing that shows I don't have Wilson's disease. My ceruloplasmin and serum copper levels are both on the low side repeatedly. Serum copper is within range, on the low side. Ceruloplasmin was below normal on two tests, and within range (on the low side) on one test.

My liver function is normal except a slightly elevated ALP, but this is not really significant.

My 24-urine copper was 18 mcg, which is well within the limits for a normal patient. Wilson's disease patients usually have 24 urinary copper levels of several hundred mcgs.

I had an MRI done which the neurologist said was OK. I didn't get to thoroughly read the report, but I trust he would have told me if the radiologist saw anything.

When I take copper, I feel worse - slightly nauseous, increase brain fog, more "out of it".

My blood tests show that I should benefit from copper supplementation. I'm wondering if there is something to the whole "biounavailable copper" that some alternative med practitioners talk about. I don't know what to do - I don't think I'm going to continue with copper supplementation due to my symptoms, but it doesn't really make sense.

I know your post is years old but I wondered if you ever got your copper and ceruloplasmin deficiencies figured out?

I myself recently found out my copper and ceruloplasmin levels are both below normal range. Zinc level totally normal.Wilson's Disease was ruled out though I have not ruled out that I am a "carrier" of Wilson's which can cause lower ceruloplasmin. It requires a genetic test that is not cheap. Iron overloading (hemochromatisis) was also ruled out as it can cause low ceruloplasmin in some cases. A neurologist suggested I supplement with Copper but I have yet to do so worried it may cause unexpected issues. Waiting to see what a ME/CFS specialist says about it.

 

[kangaSue]

I know your post is years old but I wondered if you ever got your copper and ceruloplasmin deficiencies figured out?

I myself recently found out my copper and ceruloplasmin levels are both below normal range. Zinc level totally normal.Wilson's Disease was ruled out though I have not ruled out that I am a "carrier" of Wilson's which can cause lower ceruloplasmin. It requires a genetic test that is not cheap. Iron overloading (hemochromatisis) was also ruled out as it can cause low ceruloplasmin in some cases. A neurologist suggested I supplement with Copper but I have yet to do so worried it may cause unexpected issues. Waiting to see what a ME/CFS specialist says about it.

Do you have Coeliac Disease? You can have malabsorption issues with that which can be the cause of copper deficiency. Mine is from malabsorption with chronic gastroparesis, probably in part due to poor calorie intake from a very restricted pool of safe foods but don't tolerate oral copper supplementation either.

 

[TrixieStix]

Do you have Coeliac Disease? You can have malabsorption issues with that which can be the cause of copper deficiency. Mine is from malabsorption with chronic gastroparesis, probably in part due to poor calorie intake from a very restricted pool of safe foods but don't tolerate oral copper supplementation either.

I do not have celiac disease. I was tested. I have also had a recent colonoscopy after testing positive for a blood test for UC and Crohns but none was found. I did have a bout of severe life threatening C. Difficile Colitis a year ago that put me in the ICU for 10 days. I was treated for almost 3 weeks with one if not the strongest antibiotic in the world (vancomycin). I'm sure that didn't do my microbiome any favors and I've read some ppl who get C. Difficile experience long lasting bowel issues afterward. But I guess no way in knowing if how long I've had low copper and ceruloplasmin?

 

[TrixieStix]

I do not have celiac disease. I was tested. I have also had a recent colonoscopy after testing positive for a blood test for UC and Crohns but none was found. I did have a bout of severe life threatening C. Difficile Colitis a year ago that put me in the ICU for 10 days. I was treated for almost 3 weeks with one if not the strongest antibiotic in the world (vancomycin). I'm sure that didn't do my microbiome any favors and I've read some ppl who get C. Difficile experience long lasting bowel issues afterward even after the infection is gone. But I guess no way in knowing if how long I've had low copper and ceruloplasmin?

 

[kangaSue]

I do not have celiac disease. I was tested. I have also had a recent colonoscopy after testing positive for a blood test for UC and Crohns but none was found. I did have a bout of severe life threatening C. Difficile Colitis a year ago that put me in the ICU for 10 days.

You mentioned also having IBS in another thread too, did they do biopsies looking for Microscopic Colitis when you had a colonoscopy. That can be a cause for malabsorption and has symptoms that can be mistaken for IBS.

C diff as you say can have lasting GI effects for some people. Have you considered seeing an Infectious Diseases specialist about trying a course of Fecal Microbiome Transplant to see if that can rebalance the gut microbiome? One top down treatment is often all that is required to sort things out.

 

[Crux]

Low ceruloplasmin and serum low copper are most likely indicating copper deficiency.
They can also indicate wilson's and menkes, but those are least likely.

I was just tested for them, after supplementing with copper for a month. Ceruloplasmin is low normal , and copper is in the lower third.

I was having symptoms of low copper, such as : paresthesias, unsteady gait, more fatigue, skin laxity, rashes, etc. All better now.

During the first couple of weeks of taking copper, 2-3mgs. daily, I did feel worse. I suspect that it was because, with copper/ceruloplasmin deficiency, iron metabolism is disturbed. Iron can accumulate in the organs, causing misery. ( I also have iron overload.)

The copper enzymes may have been mobilizing the iron deposits, causing the initial discomfort/pain.

Copper enzymes regulate iron metabolism. With copper/ceruloplasmin deficiency, there can be low iron anemia as well as iron overload. With iron anemia or overload, iron can deposit in the liver.

 

[kangaSue]

The copper enzymes may have been mobilizing the iron deposits, causing the initial discomfort/pain.

By discomfort/pain, I take it your not talking about copper causing you the sort of strong pain that's enough to have one considering whether they need to go to the ER or not?

 

[Crux]

By discomfort/pain, I take it your not talking about copper causing you the sort of strong pain that's enough to have one considering whether they need to go to the ER or not?

Of course not. I included 'discomfort' with pain to be more descriptive.
If there is a lot of iron deposition, though, it's possible that mobilizing it in any way may cause a lot of pain.

That's when someone should see a doctor.