Im convinced I have extremely high Glutamate levels, life is hell.

[antherder]

@jack blogs,

Re are you safe? I really don't know. People with WD can have normal ceruloplasmin and serum copper because of the acute phase reactant thing, so if you had some sort of inflammation going on at the time, that could affect your results. (My last copper tests a few years ago had just crept into normal range, which I suspect was because of increased inflammation.)

I personally would want to know what my ceruloplasmin level was at the time of the low serum copper.

Sorry if you've already said before, (I'm half asleep) but what did your doctor say about the possible cause of your deficiencies? Is your doc a general GP or a ME/nutrition type of doc?

I don't know anything about the medrol or other steroids, so not sure what impact that might have on your copper levels and general nutritional status.

Re antihistamines, was just wondering if they make you feel better if you had tried them.

 

[Gingergrrl]

Nope never heard of it until now.

In that case, it might be worth getting tested if you can.

 

[jack blogs]

@jack blogs,

Re are you safe? I really don't know. People with WD can have normal ceruloplasmin and serum copper because of the acute phase reactant thing, so if you had some sort of inflammation going on at the time, that could affect your results. (My last copper tests a few years ago had just crept into normal range, which I suspect was because of increased inflammation.)

I personally would want to know what my ceruloplasmin level was at the time of the low serum copper.

Sorry if you've already said before, (I'm half asleep) but what did your doctor say about the possible cause of your deficiencies? Is your doc a general GP or a ME/nutrition type of doc?

I don't know anything about the medrol or other steroids, so not sure what impact that might have on your copper levels and general nutritional status.

Re antihistamines, was just wondering if they make you feel better if you had tried them.

When serum copper was low, Ceruolopasmine was 30 mg/dL (25-44).

My Dr is really well read up on most aspects of health, hes a pychiatrist but really does test for and treat everything.
The poor nutrition could be because of quite a few things, i was consuming gluten since i was born yet tests have shown intolerance to it. High stress also (legit had nervous breakdowns) also have candida and sibo.

My diet has been atrocious for most of my life.

 

[antherder]

When serum copper was low, Ceruolopasmine was 30 mg/dL (25-44).

Oops. Sorry, didn't realise you meant that result was related to the low serum copper (that half asleep thing.)

I don't understand though why your doctor is telling you to take copper when your ceruloplasmin is technically within range. Ceruloplasmin is the good copper.

I'd want to get some clarification on his reasons for taking copper, if it were me. 4mg of copper is a lot. WD aside, from what I've read, you need certain minerals, including zinc and selenium, to safely remove unbound copper from your system, so if you're deficient in those, that complicates matters.

 

[jack blogs]

Took 12 days for mental helath to go back to baseline after stopping taking folate and b vitamins!!!

the moment it seemed to get out of my system felt exactly the same as the last time i went through this - and it took the same amount of days too.

I get realllllllly tired all of a sudden and extremely dizzy, have to go to bed and just lay there. Cant walk im so dizzy, lasts for about 4 hours.

Suddenly im not suicidal anymore and the torturous anxiety has dropped, still anxious but this is my baseline and i can handle it.

Wow folate really does torture me lol, its unexplainable - i assume its far too many neurotransmitters or perhaps an increase an acute increase in inflammation, who knows.

 

[jack blogs]

@jack blogs,


A lot of doctors don't know about this disease, or that low serum copper is an indicator, because that finding is not what is expected of a copper overload situation. They might conclude that you have a copper deficiency. As WD is technically a liver disease, docs often don't know that it can present as psychiatric, and/or neurological. It can also cause endocrine problems, heart problems, kidney problems, etc. LFTs can be normal too.



What did your doctor say about your copper result? Also, have you ever taken antihistamines?

Ive been researching why my urinarylsis levels are so crazy, ended up coming back to this thread and seeing that wilsons can cause kidney issues (i might be clutching at straws here)

Ive got inflammation going on for sure, so it could be causing a false ceuroplasmin.

The question is, whats the definitive test to do?


Could also be something like Fanconi Syndrome


P.S.
Recently tried antihistamines, they made be sluggish (more than usual) and had weird sleep interruptions,

 

[jack blogs]

Glutamate and Gamma amino butyrate. Look at the percentiles. Roughly, glutamate is in the yellow and GABA is in the green.

Direct glutathione supplementation can be problematic for various reasons. NAC is precursor to glutathione. If you don't tolerate that due to sulfur (thiols) you can do glutamine and glycine which are precursors to NAC. And/or you can do vitamin C which helps with recycling oxidized glutathione back to reduced glutathione.

Blood testing only shows recent exposures. If there is no current exposure, mercury may still be hiding in the brain and tissues from past exposures.

The best test is a hair toxic metals and essential elements test, interpreted with Cutler's counting rules. You can't usually directly see mercury on the test, but you can detect its presence by disordered mineral transport. It's like fingerprints at a crime scene to detect that a criminal has been there.

If you go to the Cutler section in my signature link, there is a link to the right test to get, and info on how to get it interpreted for free.

Just so I get it right, which is the right test to do out of these two?

http://regeneruslabs.com/shop?search=hair

one is an 'exposure' test, whatever that means

 

[antherder]

Hi @jack blogs, unfortunately, WD is one of those tricky diseases to rule out/confirm, as someone can still have WD even if all of their tests are normal, but 24hr urinary copper, and a slit lamp exam by an ophthalmologist, (one familiar with WD), to check for Kayser Fleischer Rings, would be the next step. Liver biopsies and genetic tests can also be done.

I've read that uric acid can be low in WD too.

 

[jack blogs]

Hi @jack blogs, unfortunately, WD is one of those tricky diseases to rule out/confirm, as someone can still have WD even if all of their tests are normal, but 24hr urinary copper, and a slit lamp exam by an ophthalmologist, (one familiar with WD), to check for Kayser Fleischer Rings, would be the next step. Liver biopsies and genetic tests can also be done.

I've read that uric acid can be low in WD too.

Dam, that stuff would be hard to do apart from the urine test.
Did you do all those things?

 

[antherder]

Dam, that stuff would be hard to do apart from the urine test.
Did you do all those things?

I did the 24hr urinary copper, and slit lamp exam, but couldn't get any further testing done after that, even though my results weren't normal. I don't think I have WD, but do think I have too much unbound copper probably as a result of malabsorption.

 

[caledonia]

Just so I get it right, which is the right test to do out of these two?

http://regeneruslabs.com/shop?search=hair

one is an 'exposure' test, whatever that means

The Hair Toxic & Essential Elements (TEE1) is the right one.

(not the exposure test and not the tri-test)

 

[TrixieStix]

@jack blogs,

I'm not sure why the lab would only show one copper result if both were requested, maybe someone else might know why, or could it be lab error, that they forgot to include both? You really need both results to evaluate your copper status. Urinary copper levels can also be of value.

If that test result is your serum copper, then just want to mention that there is a genetic copper storage disorder called Wilson's Disease that can present as psychiatric in some sufferers, anxiety, depression, even psychosis, etc. Low serum copper is one of the hallmarks, along with low ceruloplasmin. (NB: Ceruloplasmin, like ferritin, is an acute phase reactant, so could be falsely elevated when inflammation is present.)

A lot of doctors don't know about this disease, or that low serum copper is an indicator, because that finding is not what is expected of a copper overload situation. They might conclude that you have a copper deficiency. As WD is technically a liver disease, docs often don't know that it can present as psychiatric, and/or neurological. It can also cause endocrine problems, heart problems, kidney problems, etc. LFTs can be normal too.

Apologies everyone, feel like I am always banging on about copper, but I've read some horror stories about people with WD being institutionalised for decades with psych symptoms, or being misdiagnosed with Parkinson's or MS, so I just gotta mention it when I see low copper results, just in case. Especially since it is actually treatable, if diagnosed early enough, and fatal if it isn't.

I'm not suggesting you have WD, there are lots of things that could cause your symptoms, but your copper test result is low enough according to the WD literature, to at least warrant further investigation to rule it out, especially since anxiety is a symptom.

I was told that I must have a dietary deficiency of copper, based on my slightly low ceruloplasmin and serum copper, but I know I don't, and a dietitian confirmed this. I think I have a malabsorption problem that has caused a build up of unbound copper, which I suspect may explain my lifelong anemia problem, as copper is an iron antagonist. My zinc is also low, and zinc is another copper antagonist.

What did your doctor say about your copper result? Also, have you ever taken antihistamines?

I am actually seeing a genetic medicine specialist on monday to be evaulated for genetic copper metabolism disorders which are rare. Wilson's Disease is one of such copper disorders. It was last year that my low ceruloplasmin level was discovered. It was tested again last month and found to be the same. My ceruloplasmin is not extremely low but it is less than 20 which is considered the threshold for suspicion/warranting further investigation for Wilson's, etc. As for serum copper, it is not considered diagnostic for copper disorders such as Wilson's disease.

I did a 24 hour urinary copper test last year and the results were normal which makes a copper disorder such as Wilson's more unlikely, but it does not rule it out 100%. An opthamologist also looked at my eyes to see if I have Keyser-Fleischer rings, but I do not. However, given my symptoms and a few other abnormal lab results my ME/CFS doc believes that I need to be evaluated as it could possibly cause all the symptoms I am experiencing (me/cfs like symptoms plus neurological as well).

 

[antherder]

@TrixieStix, very glad to hear you are getting to see a specialist. I have seen patients say that their KF rings were initially missed, but finally confirmed later. They can be particularly hard to spot in brown eyes.

Also re the urinary copper thing, I agree that a normal, or even low reading doesn't rule out WD. There has been quite a lot of (heated) discussion of this on a WD forum;

https://www.inspire.com/groups/wils...on/low-or-normal-24-hour-urine-copper-levels/

All the best for your appointment!

 

[TrixieStix]

@TrixieStix, very glad to hear you are getting to see a specialist. I have seen patients say that their KF rings were initially missed, but finally confirmed later. They can be particularly hard to spot in brown eyes.

Also re the urinary copper thing, I agree that a normal, or even low reading doesn't rule out WD. There has been quite a lot of (heated) discussion of this on a WD forum;

https://www.inspire.com/groups/wils...on/low-or-normal-24-hour-urine-copper-levels/

All the best for your appointment!

I spent a bit of time on that forum last year when Wilson's Disease first came onto my radar. Yes there is indeed debate over the urinary copper thing on the forum. I do agree that it makes the possibility of WD much less likely.
There are also other copper transport disorders besides WD.

http://www.themenkesfoundation.org/about/news/kaler_atp7anrneurol.pdf

Thanks. I will let ya know how it goes.

 

[antherder]

I will let ya know how it goes.

Please do. Will be very interested to hear how you get on.

 

[jack blogs]

I spent a bit of time on that forum last year when Wilson's Disease first came onto my radar. Yes there is indeed debate over the urinary copper thing on the forum. I do agree that it makes the possibility of WD much less likely.
There are also other copper transport disorders besides WD.

http://www.themenkesfoundation.org/about/news/kaler_atp7anrneurol.pdf

Thanks. I will let ya know how it goes.

Also interested, be sure to post back to this thread

 

[TrixieStix]

@jack blogs @antherder So I had my appt with the genetic medicine specialist plus 3 other people were in the room with us as well (a genetic counselor and 2 residents). 6 of us total! haha He said he thinks we can confidently rule out Wilson's Disease and ATP7B Distal Neuropathy seeing as my 24 hr urine copper test was normal and that I do not have KF rings although not all eye doctors have skill to spot them. In WD that presents with just neuro symptoms 95% of ppl have KF rings. I agree with him, but want to do a 24 hr urine copper test one more time just for extra piece of mind. I will also make sure eye doctor looks for KF rings again in the future as they can be missed.

What the doctor did recommend was testing for "Inborn Errors of Metabolism" using cerebral spinal fluid. But of course insurance most likely won't cover the cost and with their institutional discount the test would cost $1,000. They sent me information about the testing so I could research it myself. They are also finding out what the differences in sensitivity are between CSF and blood as it can also be done using blood. Not only is the cost high but the thought of undergoing a spinal tap doesn't thrill me.

The doctor was talking about some kind of IEM (inborn error of metabolism) that causes dysfunction of the neuropathways in brain and results in a conversion disorder that causes neurological symptoms. My partner and I both cannot recall if this condition had a name. Anyone heard of something like this? I am going to email him and ask for more details so I can research it. Sounds strange to me. He agreed that my symptoms do seem to fit well with ME/CFS, but that there are some symptoms that don't fit. He also does not test for genetic complement deficiencies so I will have to see the immunologist. He did say that they are rare, but I already know that and rare doesn't mean much to me these days. Someone has to have the rare stuff.

The good thing about this doctor was that he took the time to get up to date on the latest research into ME/CFS ahead of his appointment with me, and said to me "I admit I used to be skeptical about chronic fatigue syndrome, but I was reading up on it and I now see there is something to it, and Harvard and Stanford consider it a real disease" (something along those lines). So that was great. He had even printed out some information about Dr. Montoya and Standford to give to me in case I was looking for a place to be seen. But unfortunately he then went on to ask if I had ever done or considered doing Graded Exercise Therapy. I quickly replied to him that GET is not recommended for ME/CFS and can make patients worse. He gave me his email so I think I will send him a short email with a few links to sources of information about why this is the case.

So overall it was a good appt and the doctor said he will work with me, but of course all the tests cost $.

 

[aquariusgirl]

we know a copper zinc imbalance is implicated in neurological disease like autism etc.....it's a not a stretch to think it may also be a factor for some of us. Also low intracellular GSH intereferes with methallotheineins incorporating copper......according to one paper i read.

 

[antherder]

Hi @TrixieStix, Glad the appointment went well, but not so good re the GET comment. I think the conversion disorder suggestion sounds a bit suss too though...

Glad you plan to redo the urinary copper and recheck for KF rings. I think I saw someone on the WD forum say their KF rings were missed four times???

I saw you mention an abnormal MRI on another thread - did they check that for WD manifestations?

With the inborn errors of metabolism, did he think glycogen storage disorders were a possibility? I read a little about them a while ago, but can't remember if they have any neuro symptoms.

Hope you get to see the immunologist soon.

 

[TrixieStix]

Hi @TrixieStix
Hope you get to see the immunologist soon.

Unfortunately the doctor who was listed online as dealing with Complement disorders got back to us and she does NOT it turns out. So now I've sent a message to a university medical center's Immunology clinic asking them if they deal with it and if not who does.

Interestingly I've just found this post on Facebook by "Dysaytonomia International"....

"This is an important abstract to share with your doctors if you are still looking for the "cause" of your dysautonomia. Ask your doctor to pull the full article. Researchers screened 195 patients with idiopathic small fiber neuropathy (SFN) for various blood tests that are used to help determine the cause of the SFN. 87% of these patients had some form of dysautonomia. 71% of patients had at least one abnormal blood test in a panel of 21 widely available tests used to screen for known causes of SFN (see the list in the comments below). The blood tests that were more likely to be positive in this population than in the general population were autoimmune related - thyroid stimulating hormone (TSH - too high and too low), Sjogren's (SS-A, SS-B), Celiac (IgA TTG), low complement C3 (associated with vasculitis and autoimmunity in general), high ESR, and high ANA (1:160 or more)." https://www.ncbi.nlm.nih.gov/pubmed/27730378

And "Dysautonomia Clinic" responded to the post with this....

"The study findings are similar to the findings of our study of 100 patients with POTS who also had a higher prevalence of positive ANA and co-morbid autoimmune conditions than the general population (Blitshteyn S Lupus 2015). Taken together, these findings challenge the current recommendations from the Heart Rhythm Society that diagnostic workup for POTS patients should be minimal. In fact, we believe that workup should be quite extensive; all of our patients with POTS and SFN get a thorough autoimmune diagnostic workup."

My issues actually started first with severe neuropathy-like symptoms in my feet then I developed orthostatic intolerance (did not know what it was at the time) and since then I have also developed neuropathy like symptoms in my face. And most recently I have developed dry mouth which can also be caused by small fiber neuropathy. How did I not know this?? Maybe it's time to get a skin biopsy done to see if it shows small fiber neuropathy.

This has great info... http://www.kumc.edu/Documents/neurology/small fiber grand rounds.pdf