Hereditary Hemochromatosis - Advice and Help, STAT

Hello. My name is Kay. On my mom's side is a history of hemochromatosis (diagnosed) and iron overload. On my dad's side is a history of liver, heart, and lung issues. My paternal grandfather died of cirrhosis of the liver.

Recently I have had nebulous labs, conditions doctors cannot make sense of. It is clear to me, after 2 weeks of confusion and being between brain damage and the life I want, that I most likely have the H63D Syndrome and gene mutation. I have narcolepsy and iron overload in the brain, but not so much the blood stream.

In early December, my doctor tried to treat my "overeating" edema, by giving me Wegovy. I started worsening, and started preparing for a brain death or damage, that I wasn't consciously aware was coming. I begged for help from my family, but they did not hear me.

In late December, my doctor (PCP) then tested my iron. My TIBC was insanely high, but my ferritin in my blood was 8. My iron was "normal" and my transferrin saturation was 12%.

I started 65mg oral iron, doctor's orders. I quickly started physically declining, felt like I had the flu! No one could explain it, and my family wouldn't listen. I thought it was a "me" problem. So, Sunday Feb 7 2026, I added 1,000mg Vitamin C to try and force absorption of the 65mg oral iron.

I immediately went into a state of confusion, almost like dementia. And I'll tell you, that nothing explains what's happened to me, other than a will to fight, and the grace of God.

We went to the ER 4 times. They couldn't find answers. One ER ran every blood test known to man, and started the HFE gene mutation test, despite not being able to admit me due to my labs not technically meeting admission level. This phlebotomy bought us time. That morning, I had to go see my abusive ex husband in court, and saw God's hand guiding the situation to a dismissal without prejudice - meaning that I can refile if he ever harasses me again. I have a feeling, he won't. And my life is more than that bastard now.

My heart was too weak. I couldn't take the adrenaline that he gave me the second I saw him turn around and smirk. But I fought, got what I needed, and I'm proud of myself. Now I'll take care of me and my family.

I need advice on how to manage this at home. I've realized that there's some issue with my cat's litter or feces. I've realized I can't tolerate the shower or sink water (Southern USA, Georgia). I've been drinking filtered water. I realized that sunglasses that are black and amber colored sunglasses, stop the epileptic-type cycles. I need help understanding what foods are safe for someone who is highly reactive to histamines and histamine liberators, but who also needs enough protein to survive. I've been taking famotidine with meals, and 1 claritin a day.

Any advice at all, for a girl who is pseudo-allergic to everything, could change my life. I want to make it to my 26th birthday and have a fresh start. I don't want to be "allergic" to the world anymore. I think by the grace of God, I will survive this, and that we caught it before cardiomyopathy, before more than a little liver scarring, before any issues with my uterus or ovaries.

I have one complication. Whether it be natural in my body or not, I believe my ex husband may have given me Ureaplasma STI. I wrestled with urethral pain for 4 years, til I divorced him. I don't think it's active in my body from his cheating and constant reinfection of me anymore, however, there is some Urea Cycle Issue. Maybe the kidneys. I'm highly sensitive to toilet paper. I had to take Azo for years, to help the pain. It always caused severe pain when it went through my kidneys.

I really want to live. My family is low income to the point where my mom will not be able to retire this year like she wanted to. I desperately want to make it to the Mayo Clinic for Hereditary Hemochromatosis, in Jacksonville, Fl. I've printed out the financial assistance paperwork. Please, any guidance on how to get seen sooner, what referrals I need, and who to call, could save my life.

The kind ER physician started running the HFE Gene mutation Hereditary Hemochromatosis test for me, on the 17th of February, 2026. It says results should be 1-3 weeks. If it comes back positive, how may I use this to see the specialist in Florida more quickly? My heart is being led there. I want to LIVE.

Thank you to any and all who read, and God bless you.