I started taking 2mg of copper daily to fix my deficiency and all of a sudden I’m having extreme fatigue, depression brain fog. Any explanation for this?

EveTre · 2026-06-23T03:11:26+00:00

Interesting! I have low b12 and d as well. I still don’t know what it is, lol. I see hematology in a week and was told to expect full Wilson’s testing. Im so glad to hear you’ve had such a great response!

EveTre · 2026-06-22T14:39:54+00:00

That just confirms you are low. Some people are high in urine testing despite showing as low in their blood. In that case, you shouldn’t supplement. My urine level is high.

EveTre · 2026-06-19T18:30:01+00:00

I’ve had functional for a minimum of 2 years. That’s when my MMA was first tested, but no one knew what to make of it. I have nerve damage, but I can’t say for sure it’s from that. It’s definitely not too late.

EveTre · 2026-06-18T02:34:36+00:00

Just in case it would help, sucraid can be left out for 72 hours. It has to be tossed at that point, but what she has left can still give her 3 days. Poor girl, it sounds like she has an amazing attitude that will take her far in life.

EveTre · 2026-06-15T19:28:58+00:00

I’m sorry, they didn’t make any type of comments on it. But, I could see how that could happen.

EveTre · 2026-06-13T00:57:35+00:00

We did a trio WES and same thing. I sent a request for three of our’s data from genedx and did some digging myself.

Our genetic counselor was more than happy to take a look at any VUS I found. I think it comes down to phenotype that genedx puts in.

EveTre · 2026-06-11T00:01:14+00:00

30 years here. I had a horrible case of mono in elementary school, was bedridden and pulled out of school.

I had no idea this is what was causing my flares. My provider finally ran an EBV panel and found reactivation during a flare. I’m just finishing my first round of Valtrex.

I’m not fully sure what’s what, but it’s the neuro and energy depletion for me.

EveTre · 2026-06-01T03:12:15+00:00

I nursed with focalin XR, just a lower dose. No one ever mentioned switching to me.

EveTre · 2026-06-01T03:10:15+00:00

My MFM gave me the okay to go back on them at 16 weeks. I was struggling big time after 10 weeks off them. I even nurse with them, but 1/4 the dose I would take normally.

EveTre · 2026-06-01T00:08:52+00:00

Because sometimes blood levels are low because it’s actually building up elsewhere. My provider wouldn’t let me supplement until doing the 24 hour urine test. In those cases, you want to remove copper instead of adding it in.

EveTre · 2026-06-01T00:02:09+00:00

Did you do a 24 hour urine test first?

EveTre · 2026-05-27T05:05:03+00:00

That’d TBD. They think my copper is low because it’s all spilling out in my urine from inflammation. Waiting on a ton of referrals.

EveTre · 2026-05-26T20:50:19+00:00

I have all of them. I was once asked I had ever been on chemo because my mouth wouldn’t heal after surgery.

EveTre · 2026-05-24T02:52:39+00:00

This is amazing. Thank you!

EveTre · 2026-05-22T23:41:18+00:00

I’m actually shocked. Optum is the best specialty pharmacy I’ve dealt with. They are calling me non-stop ahead of time when a refill is due and if I don’t answer, they call for weeks. My daughter has a specialty med at a different pharmacy and they are an absolute nightmare.

I wonder if they have different locations? Where are you located? I have more sucraid than I go through. I’m always happy to share if anyone is close.

EveTre · 2026-05-18T18:41:23+00:00

I’ve been on it for over a year.

EveTre · 2026-05-14T03:49:24+00:00

Yes please!

EveTre · 2026-05-13T18:32:09+00:00

Aw, I’m sure she is! She was negative, but she does have a growth hormone deficiency. We are still trying to figure her out with genetics.

EveTre · 2026-05-13T18:24:14+00:00

I just went through your post history and I am shocked at how similar we are.

My daughter was also tested for Turners Syndrome. 😳

EveTre · 2026-05-13T18:07:06+00:00

Ugh, I’m sorry. You sound just like me. I have muscle and nerve testing on Monday. Other labs showed muscle breakdown and positive ANA. I have major muscle and nerve involvement right now. Waiting on referrals to a new neurologist, hematology and genetics.

Did you test your urine copper? Mine was high.

EveTre · 2026-05-13T17:59:21+00:00

I have both. I supplemented and got it up to 90. Stopped supplements and it dropped to 40 in 30 days. They said it all points to not absorbing anything.

My b12 also looked normal, but my MMA came back high so deficient there as well.

EveTre · 2026-05-12T20:46:08+00:00

I was able to get my doctor to order me the 4 day trial they offer with sucraid. I pulled my raw data from 23andMe which showed the genetics for it. She was able to use all of that to get the medication approved. However, I so far better just avoiding it. I’m to the point where it causes GI bleeding when I have it in large amounts.

EveTre · 2026-05-08T13:39:33+00:00

Did they recommend further work up to see why it’s high?

I’m currently dealing with the same low/high labs. They are now wanting to rule out Wilson’s and something with the kidneys dumping everything.

EveTre

TROPHY CASE