copper deficiency

My sister had a RNY in 2005. In 2014, she had some sort of crisis. I don't know what you call it, but she sort of checked out for a while. There was much screaming and memory loss.

We're past all that, thank goodness, but we can't seem to get her copper level to where it should be. I thought she was getting IV copper when she was at Emory, but we are having a hard time getting her records. When she was discharged from there, the doctors put her on copper gluconate tablets, 2 mg. Her copper level was 54, then it dropped to 46. I tried to change her copper from gluconate to glycinate, but that made it worse. (The doctor has had her on 10 2mg capsules per day.

Her doctors are all dragging their feet, because no one here in AL has ever done this before, and they don't want to be the first.

I was thinking colloidal copper, but the customer service person wasn't sure that it would raise her copper level since colloidal is only for per day use. However, if colloidal copper goes into her bloodstream, rather than through her stomach, maybe I can fudge a little and get it higher than what it is.

Has anyone had problems with this? She's starting to fall often again, so I need to get this nipped in the bud.

Cathy

What kinds of doctors is she seeing?

Are you trying to get her records? Or is she?

Currently, we are seeing personal physician, 2 neurologists, and a psychiatrist. We're talking to three hospitals, a home health nurse, in home iv service, bariatric clinic, another 2 neurologists, and a naturopath.

I'M trying to pull the Emory records, since they are the only ones that I think gave her iv copper. I'm going to be way embarrassed if I'm wrong and they were giving her capsules. She just doesn't seem to be retaining her copper. As I said, the last time we checked it, it was 46, and it should be 70 or 80.

I have no experience or advice with this (so I am sort of bumping this topic for you) -- but I sincerely hope that you find some answers.

It's often slow here on the weekends -

Other questions -

Is she unable to manage her medical care herself?

How are her zinc levels? Does she take zinc supplements?

Has she been tested for Menkes?

Is she seeing/has she seen an endocrinologist and neurologist and hematologist?

Is she eating copper rich foods like liver? Cooking with copper pots and pans?

Here are articles to read -
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2712481/
https://www.ncbi.nlm.nih.gov/pubmed/21876546

Thanks for those articles. One of the authors came to see her when she first admitted to Emory. He is the one who told her that she had the lowest thiamin he'd ever seen in a person who was still alive. I will email him to see if he will send the protocol to my doctor.

Thanks!

Cathy

Oops! I got so excited over the article, I forgot the rest of the question! She has pretty severe short-term memory loss, so I'm dealing with most of the decisions about everything. At the time, the docs didn't know if she would live or die, or what she would be left as. So, no, I deal with everything.

She has seen all the above doctors, sometimes in multiples. The reason I'm asking here about copper, is because two hospitals refuse to give copper infusions. It's not something either has ever done and they don't have protocols.

No one has offered to give her zinc, but I try to stop that, since I'm under the impression that zinc depletes copper.

And this is the first I've heard of Menkes.

I've never thought about copper leeching into water, so I am off to find copper pots and pitchers,

Thank you times three,

Cathy

I'm really sorry about the severe memory loss. I'm glad she's got you to advocate for her - even though I know it's got to be challenging!

That's aggravating that the hospitals won't give her infusions. I mentioned the hematologist one might be willing to do copper infusions? But I'm sure you've looked into that option.

For the zinc - yes, it can cause copper deficiency, so avoiding it in supplementation could be wise. Maybe dietary sources as well? (Clearly I'm not a doctor - I've had to deal with copper toxicity of my own but that's the extent of my "expertise." I.e., not very much!)

Contacting the doctor at Emory definitely seems like a good call. I don't know if you have large teaching hospitals in your area that you might be able to reach out to?

Where did the bypass start in her duodenum? Copper deficiency more typically happens in other types of bypasses. Even with DS patients it is rare. Have they reversed the WLS?

Taking copper with zinc or iron will cause the copper to not be properly utilized. Does she take iron or get iron infusions? They should all be taken separately.

The copper deficiency can absolutely cause neurological issues. Have they determined the causation yet? That will be key to treating it.

My sister is a registered nurse, so I didn't get involved in all the planning and implementation phase. I'm just dealing with the aftermath. The doctor who actually did the surgery moved to another state afterwards, so she continued her care with her primary physician.

She has had iron infusions, at the local hospital; the very same one that isn't thinking about doing a copper infusion.

I'm under the impression that the cause is her by-pass, but I could have misunderstood what they were trying to tell me. I think that they removed the part of her stomach that absorbs copper, so she'll never be able to get a lot from her food or oral supplements. I don't think it can be replaced, so no fixing that.

Can anyone tell me where to buy copper pots/pans? The ones that I find have copper on the outside but stainless steel on the inside.

Thanks,

Cathy