Copper deficiency anyone?

Had my DS in December, 2015. Prior to surgery my copper and ceruloplasmin (copper carrying protein essential for copper transport to cells) was in the low, but normal range. Since surgery they both keep dropping despite continually increasing copper doses AND copper infusions. The doctors I've seen don't have much information on this.

I've already tried separating from Zinc, every form of copper, divided doses, seprating it from other supplements, etc

Has anyone experienced this? Or know anything about this?

I'm getting pretty nervous!

you dont include any levels so I dont know what dropping means, still in the normal range, lower?. if you are Cu deficient you would most likely have severe diarrhea.

ok so you separated Cu from Zn, that is a good start. Ceruloplasmin also plays a part in Fe metabolism so you are probably anemic.

what is your Zn/Cu ratio? IV cu*****hloride usually is recommended for acquired Cu deficiency in addition to oral consumption. Once the severe diarrhea subsides, usually oral is sufficient, you may be a patient that requires Cu IV infusions intermittently going forward.

I will assume you are seeing a hematologist, Fe also plays an imp role in Cu absorption, if not find one that is familiar with DS probably have a better chance finding a 4 leaf clover, if not find one that is familiar with short gut syndrome

Sent you a PM, but this is a copy for anyone else who may know about this:

So here are the numbers:

Just prior to surgery in Dec 2015 I had a 77 copper and 20 ceruloplasmin. After the surgery it began dropping so I increased my dosage from 2 mg, to 4, to 8 etc. Even 40 mg oral copper gluconate/day did not stop the decrease. I've tried different brands, times of day, with food, without, divided doses, opening the capsules, etc.

I've been taking one 50 mg zinc gluconate every third day and my zinc level is 70. No problems there.

I've had a total of 21 two mg cu*****hloride infusions since January (in sets of 3 or 5).

Even with those and now taking 50 mg/day oral copper (1/4 of a bottle a day) the best I can do is get the ceruloplasmin back to 14 (the lowest it got was 11), but the copper keeps dropping. It is now at 45. (Normal low is 70 for copper and 20 for ceruloplasmin.)

With all that copper going into me, copper urine is only a bit above normal at 73 (normal high is 60).

Yes, I do have mild anemia and have gotten 400 mg Venofer infusions for that.

Just occasional diarrhea. Neurologist says that, as of now, my nerves are OK.

On top of that I just had DXA scan. My hip has gone from -1.2 to -2.2 in only two years. My lumbar spine has gone from -0.3 to -1.2. I'm a 54 year old white male. I understand copper deficiency can lead to osteoporosis.

So, yeah, I'm getting a little freaked especially because I don't seem to respond to the infusions which should have nothing to do with my DS. The doctors tell me I may just have to live with a lower level just like some people do fine even though they're slightly anemic, but they can't answer why the infusion don't help. They say my "free copper" is fine, but that's just a ratio of ceruloplasmin to copper and it would be fine even if my ceruloplasmin were 5 and copper were 2 so that makes no sense to me.

My own theory is that because of the DS I'm now deficient in some hormone, co-factor, enzyme or whatever that is needed to process copper. Kind of like we need Intrinsic Factor to make B12.

As of now, they have me set up for infusions five days a week every other week for the next year until, fingers crossed, it gets better. But obviously I can't live like that. Each infusion takes three hours and it screws with my work, kids, life, etc. I can't live tied indefinitely to an infusion pump.

I would really love to hear your thought on any or all of this!

Sorry I know nothing about copper deficiency. I've been iron anemic on and off and have had various iron infusions over the years (I simply don't absorb oral iron).

I've always supplemented with Chelated Copper (2 mg once a day and separate from zinc supplement, also chelated). Last labs were 102.

Does your hematologist understand malabsorption? Did you respond to the iron infusions?

Yes, I respond to iron infusions. I've been dealing with a bariatric NP, a neurologist and a genetics doctor on this copper issue. Thanks.

It's useful to separate all minerals farther apart. I load high dose zinc on the weekend (Fri, Sat, Sun) and don't take it during the week. I stopped taking oral iron because the hematologist said it was clear I wasn't absorbing it. I take high dose copper once on Wednesday. Blood levels of everything are ok with this plan. Had very low zinc before. You might try drinking bottled water for a few weeks and see if that helps. Minerals in some city or well water might interfere with absorption. Do you have copper pipes that deliver water to your kitchen? If your pipes are very old, they may be leaching minerals into the water, interfering with copper absorption. I cook with copper pots (not copper colored, real copper

Excuse my butting in. My latest blood work showed me low in copper so I started taking a supplement, haven't tested since to see if it's working (I wasn't very low). But I take it at the same time I take my zinc supplements and I see that you all are making a point not to take the two together. Do they fight for absorption or what's the deal there?

Hi, you're not butting in at all. We're here to share info!

Yes, zinc drowns out copper, so please take them at at separate times.

I would also recommend you get your copper retested sooner rather than later. If it's headed down it is very difficult to get back up. I'm on IV copper now and the needle is barely moving.

Good luck.

Tag

So glad I came across your posts. Thanks for the advice- I'll get on this. :)