u/Kreios_IX

I was diagnosed with SFN via biopsy last summer-- I've had a myriad of issues before and since. Far and above, my most severe symptom is significant muscle soreness and muscle fatigue. Something as simple as walking up steps and raising my arms for a few seconds causes severe, near-instant muscle burnout. I can push/pull/lift with near-normal strength, but it's painful to do so and again, my muscles will burn and fatigue very quickly.

So, I posted the following in the copper deficiency subreddit about a month ago and got some helpful feedback, so I thought I'd re-post it here in hopes of gaining some additional information/tips:

So

First time poster here— I’d love some insight or advice from other folks in a similar position to myself.

I’ve had questionable symptoms for a few years: significant muscle burnout in arms and legs— particularly with even minor exertion (reaching/squatting), tingling/numbness in hands and feet, persistent sense of GI fullness, etc.

In summer 2023, I started experiencing significant GI symptoms— fullness, lack of appetite, abdominal pain, etc. Eventually, I tested positive for methane SIBO the following year.

However, by spring 2024, shortly after having COVID for the first time, I began having an issue with my nose (still ongoing): non-allergic rhinitis, along with a constant, unrelenting sense of pressure around the bridge of my nose. I breathe fine— normal facial CT and nasal endoscopy.

By around December of 2024, I started experiencing more symptoms: I struggled to track moving objects on a screen, along with generally worsening vision. I also started having problems with my equilibrium. I wouldn’t describe it as vertigo, but rather disequilibrium— almost like trying to stand still on a moving boat.

Around spring of 2025, my symptoms got much worse: my balance was very poor, visual tracking had diminished further, and my body felt so physically weak that I would often have to sit in the shower, lean against a wall, etc. I also started experiencing a lot of PVCs and elevated heart rate around this time.

Finally, by April of 2025, my neurologist found my copper deficiency. He advised I start copper glycinate 3mg 2x a day. Admittedly, he had not seen a patient with this problem prior to me, but I’m sure you all have heard that many times.

Meanwhile, my GI symptoms were as bad as they’d ever been. After doing ABX twice for SIBO, I see an integrative health provider. I do a Vibrant gut zoomer stool test and find I either have early stage celiac or a notable gluten sensitivity. I go GF immediately after getting this result and have been ever since.

After 2 months, my symptoms worsened further, now including substantial muscle soreness— almost like I was beaten in my sleep. I started to question if I had MS (prevalent along with Lupus in my family). I also start developing aura migraines— occurring every 1-2 weeks.

Around this time, I also undergo an EMG and SFN biopsy— the former is normal, but the latter comes back positive.

After being told there’s almost no chance I have MS, my neurologist retests my copper— it’s, much to his surprise, even lower. At this point, we decide to start infusions (4mg copper chloride for 4 days in a row). Frustratingly, the number barely moves.

By the end of the week, we schedule to have them done 3x a week. After 2 months of this schedule, I yet again make no progress. At this point, I learn what ceruloplasmin is and we test that too— it’s also low.

It’s now September 2025, and I decide to also implement 3mg copper glycinate 3x a day on non-infusion days, and on infusion days, take 1 3mg pill.

My copper jumps from 48-51 to 57 mcg/dl. However, my GI issues persist, so I go on SIBO antimicrobials via the integrative health provider’s plan.

Subsequently, my copper and ceruloplasmin tank— I suspected this would happen, but irritating nonetheless.

During this time (Oct-Dec 2025), I meet a hepatologist for the first time, who is the only doctor I’ve met thus far who knows anything about copper disorders. He’s convinced I almost certainly have a genetic disorder.

After the appointment, I do a 24HR copper urine and metabolic copper genetic panel to test for Wilson’s, along with a variation of ATP7A, etc. The copper urine was normal, and after a month, I get the genetic results back: normal.

It’s now January 2026 and I’m continuing with the infusions (had been since July 2025). My levels slowly rise all the way to 60 mcg/dl copper and 0.19 g/L ceruloplasmin. Upon seeing this, I scale infusions back to once a week, thinking I’m progressing nicely.

February comes around and my hepatologist refers me to the genetics department. I meet with them and speak about my issues at length for a couple hours. They decide I need whole genome sequencing. At the end of the appointment, they perform the test.

A month passes and I get the results back: normal— everything completely normal.

This brings me to current day: I’ve done about 80~ infusions since July 2025, my copper fell back down to 51 mcg/dl, and my hepatologist has sent a referral letter to the NIH. I’m now waiting to hear back from them on if I’ll be accepted.

Some odds and ends: normal endoscopy/colonoscopy in June 2025, my vitamin A, B1 (Thiamine), B2 (Riboflavin), B6 (Pyridoxine), B12/folate, and D are all normal. My zinc is low/normal at around 58 mcg/dl. My molybdenum and manganese are also normal. My iron/ferritin panel came back normal as well. I don’t consume anything with notable phytic acid like oats.

Apologies for the very, very long post, but like many of you, I’ve tried nearly everything that I can think of, and as most of you have come to find, most doctors overwhelmingly know nothing about copper— especially true deficiencies. I’m sure I missed something, but this covers most of the story up to this point.

Any thoughts?

Edit: I forgot to mention: I had my gallbladder removed in 2017, had pretty severe erosive gastritis for 2-3 years afterwards. Oddly, I didn’t have gallstones— the gallbladder was simply inflamed. I had a fairly decent diet prior and my weight was at a healthy point beforehand. I dropped about 30 lbs afterwards and I’ve been around 150-160 ever since (6ft, male). I wanted to bring this up as my integrative health provider mentioned the possibly of some type of bile loss/leak causing my copper deficiency.

I also forgot to include: I lost a considerable amount of weight from May-June 2025 (prior to going GF). I went from 156>144 lbs in about a month— I’ve since regained the weight.

Current levels for various vitamins/minerals:

Vitamin A

Normal value: 18.9 - 57.3 ug/dL

Value: 37.3 ug/dL

Vitamin B1, Whole Blood

Normal value: 66.5 - 200.0 nmol/L

Value: 111.2 nmol/L

Vitamin B2, Whole Blood

Normal value: 137 - 370 ug/L

Value: 191 ug/L

Vitamin B6

Normal value: 3.4 - 65.2 ug/L

Value: 30.1 ug/L

Deficiency: <3.4

Marginal: 3.4 - 5.1

Adequate: >5.1

Vitamin B-12

Normal range: 232 - 1,245 pg/mL

Value: 606 pg/mL

Folate

Normal value: >3.0 ng/mL

Value: >20.0 ng/mL

TIBC

Normal range: 250 - 450 ug/dL

Value: 284 ug/dL

UIBC

Normal range: 111 - 343 ug/dL

Value: 143 ug/dL

Iron

Normal range: 38 - 169 ug/dL

Value: 141 ug/dL

Iron Saturation

Normal range: 15 - 55 %

Value: 50%

Ferritin

Normal range: 30 - 400 ng/mL

Value: 165 ng/dL

Zinc, Plasma Or Serum

Normal value: 55 - 110 mcg/dL

Value: 58 mcg/dL

Copper

Normal value: 70 - 140 mcg/dL

Value: 51 mcg/dL

Ceruloplasmin

Normal range: 0.20 - 0.60 g/L

Value: 0.19 g/L

I posted this on the ENS subreddit the other day, and thought I'd see if any other folks might have some suggestions over here:

Hey, first time poster here and I'd love some advice.

So, I was historically a mouth breather my entire life, up until Sept 2022, which I had a septorhinoplasty (also had submucosal resection with lateral out-fracture). My septum was extremely deviated and one side of my nose was more or less entirely blocked prior to surgery.

My nose was very large and the surgeons felt that my dorsal hump was pinched at the top, further impeding my breathing. So, they ultimately shaved the hump down and used the excess cartilage to create a sort of make-shift breathe right strip. They also used grafts to strengthen the tip of my nose, as I also had nasal valve collapse on the left side. Additionally, as mentioned earlier, my septum was extremely deviated, so they moved it pretty far over to the left. Surgery was long, but went well and my QOL improved tremendously for about a year and a half.

Spring 2024 comes around and I catch COVID for the first time. After a few weeks, I recover and I went outside to weed-eat my backyard (I had just had a large tree cut down a few days prior). Shortly after starting, I clipped a large piece of mulch, which flew up and hit me pretty hard on the bridge of my nose.

After this, I noticed that where there used to be two little bumps inside my nostril (from the graft at the tip), was now a fairly large, rectangular piece of the graft that sticks out a bit. Also, though perhaps it was always this way, I noticed a small spiky bit of cartilage at the base of my right nostril (presumably where my septum used to connect).

Either way, not long after, I develop an issue where I feel a constant, and I mean absolutely constant sense of pressure/squeezing/clamping sensation at the bridge of my nose (right over the nasal bone). It never, ever stops, though it's notably worse when I bend over and when I'm lying down and turn my head side to side.

I eventually see both of my surgeons, whom do nasal endoscopies on me and find nothing of note. I then see a neurologist for months, though he ultimately has no ideas as to what could be the cause.

After trying gabapentin (900mg nightly) for months, I discontinue use as it didn't help. I also end up trying astepro, budesonide saline mix (2x a day for months), and ipratropium (does help with the chronic runny nose, but not the congestion or constant pressure).

I go back to my ENT and he orders a facial CT. It's normal besides the fact that my right turbinate is hypertrophied (may be inconsequential). I see him in office again and he scopes me once more. He notes that my right turbinate is quite swollen, and nearly touching my septum. He suggests we repeat the submucosal resection with lateral out-fracture, but notes he's not certain that it will be a permanent solution. He added that it's very uncommon for him to need to do the surgery more than once, and that I had some type of white, frothy substance in my nose (it didn't look like mucus). He suggested that I may have some type of autonomic issue, as my nose very frequently drips, too (much worse with eating and temp change).

After this, I try 10, then 20mg nortriptyline for 2-3 months, but it doesn't help. I realize, however, that's a low dose, but the GI side effects were just too difficult to deal with, at least for me.

This brings me to current day: I feel like I've nearly exhausted my options, yet I still don't even know exactly what's wrong with me. I don't know if it's some type of post-viral autonomic issue that or possibly a physical injury that resulted in some kind of nerve damage. I've read more and more about ENS, and I do take it very seriously. I don't want to have to get this surgery again, but I feel I'm running out of options.

Based on what you all know, does this sound like more of a nerve issue or an autonomic/vascular issue? The only other plan I have right now is to try an SNRI like cymbalta, but that's about all.

Again, this sensation around my nose is legitimately unrelenting. It's been 2 years of constant clothes-pin like pressure, and I'm just very, very sick of dealing with it.

Any advice or info? Also, apologies for the long post, but I wanted to be thorough with my story-- thanks for reading.

I forgot to mention, I also ended up having a brain MRI via neurology, and that was normal as well. Also, I probably should've mentioned: my right turbinate is indeed swollen much of the time and I'm very often congested on that side of my nose, even now.

Another note at the end here: my ENT surgeon did mention that he's able to do posterior nasal nerve neurectomy (intra-op division of the posterior nasal nerves). He also noted that he here's microdebrider for SMR.

Also, even when I take afrin and iptratropium, while the runny nose and congestion improve, the constant pressure on the bridge of my nose is still present-- it's just not as intense.

Sorry for the very, very long post, but it's been a long two years-- with that said, any thoughts?