Ceruloplasmin/Copper Toxicity-advice needed

[antherder]

I'm wondering if anyone can help me interpret some test results and offer some suggestions on where to go from here.

I don't think I have Wilson's Disease, which is a genetic copper storage problem, but I do think I am copper toxic, and copper deficient at the same time.

I recently had my ceruloplasmin level checked. The results were;

.18g/L (0.15-0.60)

While this looks like it's within the normal range, reference ranges vary between labs. According to sites specifically about Wilson's Disease, any ceruloplasmin level less than 20mg/dL (the Merck site uses the reference range 20 to 35 mg/dL) warrants further investigation.

My first question is, have I misinterpreted my results? I don't trust my old noggin anymore, what with all that brain fog up there...

The locum I discussed these results with didn't think they were significant. I suspect my doctor would probably say the same, but I think they are very significant. I've had a high level of exposure to copper my whole life, and I have a high copper diet. If I'm not binding much useable copper, where is the rest of it? Wouldn't that mean that it's in my system, unbound, causing mischief? My serum iron and zinc are low. I've had trouble with anemia since I was a child. I've never been able to get enough iron from my diet, regardless of what I eat. I have to take supplements. Although now, my iron is low again, even though I am taking iron pills.

I know that some people recommend hair analysis for confirming copper toxicity, but I can't afford it, and I also want some sort of test that a doctor would recognise as relevant.

I'm considering getting a 24hr urine copper test done, which doesn't need a doctor's referral. I don't think my doctor would order one.

The other option is a slit-lamp eye exam to look for Kayser-Fleischer Rings, but I don't know if these are present with copper toxicity, or just Wilson's Disease.

Maybe I've got it wrong, and I don't have a copper toxicity problem, but given my symptoms, I need to rule it out...

Not really sure where to go from here. Suggestions, anyone?

 

[leaves]

I had an earlier thread on this http://www.forums.aboutmecfs.org/sh...er-coloured-ring-around-pupil-copper-toxicity

I think it is a common problem, rapid blood turnover some think. i eat a relatively low copper diet and take zinc and enhansa (curcumin) both are copper chelators.

 

[antherder]

Thanks, Leaves. I do plan to take zinc, when I find a form I can tolerate.

 

[rlc]

hi antherder i,m also from nz dont know if you,ve followed up on ceruloplasmin resualts but the referance range you,ve quoted is definatly wrong!! got mine done at aotea pathology wellington there range is 0.20-0.60. you need to get a 24 hour copper urine collection done and see an ophthalmologist for slit lamp exam for kayser-fleisher rings and sunburst cataracts. got mine cheeked at local ophthalomologist didn,t cost much just had to explain what they where looking for to them and they looked it up and did it.Don,t mean to freek you out but if your right about what your resualts said, from what i know below 0.20 is considered diagnostic for wilsons. you also say you've had high copper exposure not quite sure what you mean by that but it is possible to have chronic copper poisening hope this helps. Also zinc and copper are antogonists so to much copper would explain low zinc.You might find this interestng there's a link between low caeruloplasmin and low iron http://www.ncbi.nlm.nih.gov/pmc/articles/PMC322742/If you havn,t followed up on wilsons yet please do. if it is wilsons or copper poisening the sooner you get treatment the better P.S most docs no nothing about wilsons cause its rare find a good one! best of luck

 

[antherder]

Thanks, rlc.

I confess I've still been dithering about what to do, but your reply has spurred me back into action. I will try to get a slit-lamp exam done this week.

I've had neurological symptoms--primarly balance issues--for years and they've never been investigated. I have noticed in the last few years that I'm slurring my words a bit, having trouble writing, and getting an occasional tremor in my leg. Subtle symptoms, but ones that need to be checked out, given the possible connection with excess copper.

Thanks again for your help.

 

[rlc]

sweet mate glad to help please remeber not everyone with wilsons has the kayser-fleisher rings you need the 24 hour urine copper test as well, i would recomend taking a copy of what the merck manual says to your doctor about the referance ranges for ceuluoplasmin as there pretty much the the medical bible, also if you want to contact aotea pathology about there ranges the number is 04 381 5900. The neurological symptoms your discribing sound like wilsons or copper poisening, not a hundred percent sure but i think the tests and treatment for the two are the same. i also think that there are tests and treatments for exposure to the likes of 2,4,5-Tmight be worth investigating if it's not copper, and if it's neither i would certainly want to see a neorologist about thoses symptoms i think they'd be very interested in those kinds of symptoms! best of luck!!

 

[antherder]

I was going to try and get an appt today. I will probably do the 24hr copper test too. Do you think I should try and force a copper dump when I do that though? I will take the Merck ranges to show doc, I just can't face having to beg for more tests right now...

Can I ask if you have improved with treatment? From what I've read about the copper chelators, I don't like my chances of tolerating them. Will worry about that if I get a positive diagnosis, I guess...

 

[rlc]

hi don't worry about going to the doctors yeah i know most of them are anoying at best but if you've got all the informaion you need from respectable sources e.g mercks it shouldn't be to much of a problem. get them to ring aotea lab if they start arguing about referance ranges. If they don't help try another doctor. not sure what you mean by copper dump but it you have wilsons you don't need to do anything for the 24 hour test because the bodies constantly trying to get rid of the copper so you'll get a failed resualt anyway. don't worry about copper chelators till you get a diagnosis. i know the nz medical system is crap for people with CFS but if you get a wilsons diagnosis i,m sure you,ll get good treatment. doctors love rare diseases and they'll all want to know you then. i don't actually have wilson's i was investigated for wilsons but dont have it, i know alot about it and other conditions because i lost trust in doctors years ago and always extensively reseach anything being investigated. best of luck and i hope there's no more aftershocks last thing you need!

 

[antherder]

Thanks again, rlc. Glad to hear you don't have Wilsons. Doctors sure hate it when you know more about a disease than they do!

 

[rlc]

hi just a bit of advice for dealing with difficult doctors, if you know any one who will go with you as a support person take them it can be amazing how differently they behave when theres another witness in the room. Also as a patient in nz you do have rights and if you let your doctor know that your aware of them this can also lead to a sudden shift in their attitude towards you, heres a link to your rights http://www.newzealandnow.govt.nz/patient-rights~288.html I know its a real shame that we have to go to such lengths to get proper treatment but unfortunatly theres a lot of doctors around with very bad attitudes. hope this helps best of luck!!!

 

[antherder]

Thanks for the link. Yeah, the medical profession in general has an attitude problem...

I found a great journal article yesterday that I will take to show my doctor. It shows the proper ceruloplasmin reference range for Wilson's, and is aimed at making docs aware they need to screen for this disease when certain symptoms are present. Even if I don't have it, my doc needs to be aware of it incase other patients are going undiagnosed.

http://ebm.rsmjournals.com/cgi/content/full/223/1/39

 

[rlc]

thats a good article you,ve found there! from my experiance i,d use slightly stronger words to describe the medical profesion then attitude problem LOL. best of luck mate hope it goes well for you and you get your diagnosis quickly!!!!

 

[rlc]

hi antherder found this today ◦Falsely low ceruloplasmin levels may be observed in any protein deficiency state, including nephrotic syndrome, malabsorption, protein-losing enteropathy, and malnutrition. Have you had your kidneys checked? also If ceruloplasmin and urine and/or blood copper concentrations are low, then the patient may have a copper deficiency.
hope this helps all the best mate

 

[antherder]

Thanks for that. Lack of protein could definitely be a problem. Haven't had my kidneys checked. On my list of things to do...

I'm having a slit lamp test tomorrow. I'm pretty sure I don't have Wilson's and that there will be no rings to be found, but have to rule it out. What a shame the process of elimination requires an outlay of money... Next step will be to do a 24hr urine test, and then reevaluate. I still think there's a reasonable chance I have too much unbound copper, as I have a sulfite/sensitivity and this can be copper related. Then there's the history of anemia. I was interested to read also that patients with Wilson's often have bone abnormalities like osteochondritis in the spine. Tick. Small sample size, but that's to be expected with such a rare disease. I'm guessing bone problems would also occur with copper toxicity.

Have to consider all possibilities!

 

[rlc]

hi glad to here your getting slit lamp done remember to ask them to look for sunflower cataracts as well as kayser-fleisher rings and remember if you don't have them it dosn't mean you don't have wilsons, i think when i had my eyes done it only costed about $50, best of luck!!! let me know how you get on

 

[Athene]

Antherder,
Just wanted to say that excess copper is practically normal for people with CFS. I did the urine test you mentioned and my level was seven times the "normal" maximum. Based on talking to people im KDM's waiting room, this is about average.

 

[antherder]

Thanks, Athene. That's interesting. Disturbing, but interesting. Have you had any success at chelating it? Did you get the eye test done? Do you know if elevated serum aluminium is common in CFS too? I'm wondering if it could explain my deterioration over the past year and a half (ie, since I've been taking an aluminium based ulcer med). Aside from the reduced nutrient absorption factor of a drug that lowers stomach acid, I've read that copper and aluminium are synergists.

rlc, I had my eye test today. The optometrist wants to have another look next week with some more high tech equipment (no extra charge, she was very nice). I have pigments in my eyes that she thinks are just pigments, but wants to make sure they aren't the start of the KF rings. No sunflower cataracts.

 

[rlc]

hi antherder very strange what optometrist said, what they need is a slit lamp, there is no other high tech equipment to test for this, sounds like they either didn't have one or weren't sure what they where looking for,when i had my tests done they had to look it up in a large book that contained all the possible eye illness, make sure they refer to this book, and glad to hear she was nice but dont mistake nice for good it's important that this is done right, so keep an eye on them (no pun intended) if you can get the 24 hour test done soon it can help to confirm diagnosis, you say you have neurological symptoms which is a sign of wilson's so it's very important to make sure that every thing is done properly all the best mate

 

[rlc]

Antherder,
Just wanted to say that excess copper is practically normal for people with CFS. I did the urine test you mentioned and my level was seven times the "normal" maximum. Based on talking to people im KDM's waiting room, this is about average.

hi athene dont want to alarm you and sorry if i'm saying things you already know, but not only does high 24 hour urine copper strongly indicate wilson's, it is also a strong indicator of some very serious liver conditions here's a link to them http://en.diagnosispro.com/differential_diagnosis-for/urine-copper-increased/10446-154.html if you haven't already had all possible tests to rule out these conditions, my opinion is that it would be a good thing to do it would be a tragedy if some thing was being missed, misdiagnosis is very common, autopsies show that doctors misdiagnose fatal illnesses about 20% of the time here a link to an article about it http://www.nytimes.com/2006/02/22/business/22leonhardt.html Every diagnostic criteria states that a diagnosis of CFS is only to be given to people who dont fail standard tests, if every one with CFS had high urine copper they would of worked out why years ago, they know a hugh amount about copper in the body because of it's role in these serious diseases, again sorry don't mean to alarm any one but if they have failed standard tests i would urge caution about excepting them as being caused by CFS and get them properly investigated, doctors make mistakes all the time!! all the best

 

[antherder]

rlc, sorry, I should've added more detail to my last post, but I had to go and have a nap after my big day out... She did use a slit-lamp, but sometimes a special lens is used in conjunction with the slit-lamp, to detect KF rings. I think it's called a goniolens. She had done her research on the rings and had her text book out too. She'd never seen them before in a real live patient, but I reckon very few opts would have...

I will definitely get the 24hr thing done though. I'm not sure if I will do the eye test again as google tells me they have to smear anesthetic on my eyeball which sounds decidedly icky. Might do the urine test first. Expect I will dither a bit before making a firm decision. I wonder if there is a link between excess copper and dithering...