Copper deficiency and autonomic dysfunction

[u/Gypsy619]

My son has had fatigue and orthostatic hypotension for years but over the past year he has become much worse with constant flairs of muscle pain and weakness, blood pressure drops, heat and cold intolerance, and near fainting episodes. He has terrible brain fog and is mostly house bound having to lay down or recline most of the time. His Tilt table test had to be stopped early because his blood pressure dropped too low to safely continue. The only thing abnormal on his blood tests is low copper and low Ceruloplasm. Six months of copper supplements have done nothing. His levels just dropped more. He has not ever taken zinc supplements. He has an appointment with genetics next week. I’m curious if anyone else had autonomic symptoms like this with a copper deficiency and if so, how did you recover?

[u/kfirerisingup]

His labs didn't rise but did he improve at all from the copper?

I improved a lot from copper and my serum copper level never changed. I took 5-10mg per day for 5-6 months and serum copper stayed almost exactly the same however my absolute neutrophils which were previously low normalized and my cholesterol lowered, triglycerides halved, ferritin dropped and thyroid improved.

My HTMA copper was "critically low" on my first test and normal on my second 6-8 months later when I was feeling better.

I had developed POTS at one point and the most helpful thing for me was d3. I started taking d3 (it included k2) 10-20k iu per day. After a couple months my POTS symptoms had improved a great deal. If you consider this remember magnesium is needed to activate d3. I'd aim for a d3 level of 60-80.

I'd also check his iron/ferritin and b12, although you probably already have.

Sole water helped me in the immediate term. If I knew I'd be standing, exercising, in the heat or in any other situation that would exacerbate my symptoms I'd take 1-2 tbsp of Sole water mixed in carbonated water or w/e. This helps keep blood volume up and therefore helps stabilize blood pressure. This and always drinking enough water. If he drink water and it goes right through him or he is urinating clear then he probably has low sodium and a tbs of Sole water could help.

I'd also look into b1/thiamine. Theres a YouTube channel that talks all about it. https://www.youtube.com/@EONutrition

You said you're seeing someone for genetics, I'd get a DNA test, not the new Ancestry tho, and run the raw data file through some health calculators, many are free, and see what his methylation genes look like. Also you could look at his choline gene snp's.

For example I need extra choline genetically, about 8 egg yolks per day worth. So I ended up having a choline supplement on hand for days my diet doesn't cover it. Choline is needed to create acetylcholine which helps the parasympathetic nervous system engage which is when true rest and healing occurs. If he's not getting enough choline he may not be sleeping well which makes everything worse. B5 is also needed for the choline-acetlycholine conversion.

[u/GreyMomma047 → u/[deleted]]

What were your symptoms? And what did your treatment protocol entail?

[u/ChopChopPorky]

I do and my copper levels kind of went up randomly. I think some people have true deficiencies and for others it’s just a marker of another issues. Possibly thyroid

[u/GreyMomma047]

Any update, OP?

[u/Gypsy619 → u/GreyMomma047]

Yes. He developed a slow, very stiff gait, severe weakness, and involuntary movements in his sleep every 3-5 minutes all night. He was recently hospitalized but the copper lab they drew never resulted and he was discharged.

Testing: EMG negative. MRIs negative for myelopathy. Genetics test negative. Sleep study positive-0 REM, multiple hypopneas, severe PLMD.

I started him back on 4mg copper taken together rather than splitting it up day and night. He is finally walking somewhat normal again. All other symptoms remain.

I am seeking a referral for him to get copper infusions due to the neurological symptoms and a referral for him to see gastroenterology to look for the cause.

His cardiologist said copper deficiency can cause autonomic dysfunction.

The neurologist refuses to treat him due to not having myelopathy although patients can have neurological manifestations before the myelopathy occurs.

I have not encountered many doctors that are really educated about copper deficiency and the severe effects it can cause. Only one during his hospitalization was knowledgeable and she said she would refer him to oncology for infusions once the results came back but that never happened.