copper deficiency and PN...

[KarkMuzio]

Hello everyone,

I am recent to this forum so please forgive me if this question has been answered in the past. I recently have learned that I have a copper deficiency and I was also diagnosed with PN in my feet about a year ago. I also have loss of pigment in my skin and am slightly anemic. Can anyone confirm that a supplement of copper might help my PN? Has anyone been helped by taking copper supplements. Thank you very much for any information that you may have.

Mark

[bookish]

Hi, sorry that you haven't had any replies to this interesting question. I had copper tested by my neurologist in case it was a factor, mainly because I had been supplementing zinc and too much can lower copper levels. I was told that it was normal and that gluten and vit B12 are more likely to be my personal causes. I've only ever taken a tiny amount of copper in a multivitamin. I understand that copper deficiency anaemia can happen in malabsorption, such as coeliac, crohn's and gastric surgery, but all of those can equally affect B12, and copper deficiency can occur alongside B12 deficiency (which is much more common and harder to test for accurately than you might think). Both can cause neuropathy and pigment loss and anaemia. So I'd get some advice on the best way to supplement the low copper and hopefully it will help if that is the cause, but I'd get B12 (in fact all the Bs) checked too. I think that copper supplementation is more likely to resolve haematological signs promptly than neuro - it may take time. Best wishes

[KarkMuzio in reply to bookish]

Hello bookish,

Thank you very much for your reply. We seem to have quite a lot in common. I agree with everything you say. I was finally diagnosed with PN a year ago after having beginning symptoms for about a year previous to that. My EMG test confirmed large nerve and the skin biopsy came back negative for small nerve. My doc said exercise a lot, drink water and prescribed Metanx, the usual stuff. I balked on Metanx as B6 and Folate supplements (excluding B12) are not recommended for those who have prostate cancer, which I have, but am in remission after treatment. Because my PN has been slightly progressing over the past year I have decided to start taking 2 MG of B12 a day. I have been on that for only 2 weeks now. Recently, on a fluke, I had a heavy metals test done through Quest Diagnostics and my copper deficiency showed up. After a bit of research I decided to order a copper gluconate supplement at 2 MG. Its the same strength as the Metanx prescription. I have also tested negative for Celiac. As you mentioned, it's interesting about the pancytopenia and Vitiligo connection. Who would have thought? (Then again maybe one of my doctors should have thought! ) The last tests that I will have done are the B6 level test and a Homocysteine level test. I plan on checking my copper levels on at least a 2 month basis going forward along with my B12 levels.

I hope the above all makes sense. I'm right in the middle of all this reading and research and this is why i put my post out there hoping for a response. Thank you so much for responding! If you hear of anything that you think may interest me please forward.

Mark

[bookish in reply to KarkMuzio]

Hi, sorry for the late reply. Feeling a bit rough so not capable of making intelligent comments at the moment! It does make sense, and it will be interesting to see what your homocysteine comes back as. Can't say I blame you re. the Metanx (although if he thought the PN was blood sugar related you'd have thought he'd have tried diet changes first) - folate wants to be at the sweet spot, not too high and not too low. And type matters. ncbi.nlm.nih.gov/pmc/articl... What is tricky is that serum folate can be high and you still be deficient at cellular level - so what if all those people with 'high' folate were actually low in functional folate, hence one-carbon cycle not working well, increasing risk of autoimmunity and cancer. Once you've been on the B12 for a bit, have your B6 result and the hcy result (assuming it is higher than optimal), if the B12 and B6 don't bring it down, try a little (I started with 1 drop = approx 76 mcg) of methylfolate and see if it helps. Or maybe you've already done genetic/polymorphism testing and know if you have SNPs in folate processing. Pigment is an odd one as B12 deficiency can cause hyperpigmentation or hypo. Dad has one, I have the other. Good luck, and of course I will pass on anything I can think of.

[KarkMuzio in reply to bookish]

Thank you so much for the info. If I can I have a couple more questions. What is the Folate level I should be aiming for? ...and the same for homocysteine? Are there optimal ranges for these considering the PN situation?

My past results:

a past Folate Serum test (11/23/22) was 16.6ng/ml

a Methylmalonic Acid test was 171 (ref range 87-318).

Protein Electrophoresis, Serum w/reflex Immunofixation was normal.

CRP inflammation was very low which is normal.

Sed Rate was normal.

A1C is 5.1

My Pancytopenia was diagnosed 20 years ago and my slighty low CBC results with red and white blood cell counts seems to be my 'normal'

Thanks again bookish for your thoughts on the above. I'm just trying to figure some of this out. When my copper deficiency came back last month it got my hopes up again. Nothing seems to jump out for the PCP and Neurologist that I'm seeing so I look for the details in the 'weeds'.

Mark

[bookish in reply to KarkMuzio]

Hi and sorry for the delay. I am not an expert (or medically qualified) so these are just my musings from reading and personal experience - for what they are worth! But you are more than welcome.

Folate like most Bs can be tricky, in that you cannot readily identify a cellular deficiency but can have one at any serum level. My own serum folate was near the top of the range (taking only a tiny bit of folic in a cheap multivitamin plus my usual folate from food, a reasonable but not excessive amount I'd have said) and I've read since that this does happen in B12 deficiency (the folate needs the B12 to metabolise and recycle fully and without enough B12 it can get stuck - the 'folate trap' - rising but unusable). Generally I think mid-range is where people are encouraged to try to sit with folate, but you need to know the range! Looking at your earlier test of 16.6 ng/ml, I see that a serum range is commonly approx 2.7 to 17 ng/ml, which would make you high in range, much like I was. (Mine came down to mid when I introduced methyltetrahydrofolate in smallish doses - 400-600 mcg daily, but that is likely due to my genetic SNPs so may not do the same for you, and far better to wait for your new result and homocysteine before trying to change anything else). There are red cell ranges (much higher) and plasma (lower), so you could just check that it was a serum test.

For homocysteine, I understand that optimal is now considered approx 6 or 7 - try dividing your age by 10, as rule of thumb (would make me optimal at 5.9 but as yet I haven't manged to get the consultant to provide the actual figure.....). Probably not too much concern if on the right side of 10, but brain degeneration can appear at 11.5 so you don't want to be heading towards what used to be considered the top of normal range risk point of 15+. To reduce needs B9 (folate), B6, B12, likely the other Bs, zinc, omega 3 fats.... The high hcy itself can cause damage, as well as being the sign of poor processing of those essentials.

I know very little about optimal figures for MMA, but found this labs.selfdecode.com/blog/me... which to me suggests that perhaps your figure isn't irrelevant. MMA can get very high indeed but neither it nor hcy have to be high to have a B12 or other B cycle failure/disruption, as it depends where the failure or fault is - some get high MMA, some high hcy and some both, but also some neither.

I think the upshot is that neurological symptoms (and indeed other symptoms such as depression, or tinnitus, or blurred vision....) can improve with B12, even if B12 deficiency isn't the cause or the main cause. And it commonly is. For many it needs to be injections, as just getting it into the blood is not enough to jump our own personal hurdles preventing healthy cellular use. My supplemented serum B12 is really high but I'm clearly going to benefit from injections instead.

Hope something is useful. Best wishes