You must be logged in to create new discussions.
-
My mom was diagnosed with HH, but my doctor refused to test me. Can I push for testing?
-
-
-
-
-
-
-
This is ridiculous they need to remember two crucial facts!
1. They work for us!
2. It’s our body!
-
-
- You must be logged in to reply to this topic.
-
WHY did no one warn me about the size of that needle?
- You must be logged in to reply to this topic.
-
It’s been almost a year since I started treatment, and I finally feel better!
- You must be logged in to reply to this topic.
-
My spouse just told me I’m ‘overreacting’ about my iron levels. Do your family and friends actually get it?
-
-
-
-
People who don’t have HH will never fully understand, but it’s exhausting trying to explain it.
-
Yeah, I’ve had to repeat myself a million times. Now I just say ‘genetic disorder’ and move on.
-
-
-
My mom still thinks iron overload is just me being ‘dramatic.’ I wish people got how serious this is!
-
-
She has, but she just says ‘everyone’s iron is different.’ Like, okay, but mine is trying to kill me. 😅
-
-
- You must be logged in to reply to this topic.
-
Ferritin is down, iron levels are better… but my joints still feel like I’m 90
years old! What actually helps with HH joint pain?
-
-
-
-
Almost forgot, make sure you take it with Black Pepper, it’s the active ingredient in Turmeric and when mixed is 2,000 times stronger than Turmeric!
-
-
Infrared sauna & castor oil packs helped my inflammation.
Just rub it on the joints, cover with a cloth, and apply heat!
-
-
Have you tried the Detox mask? I love it! The green one, my feet looked so different afterwards! I swear by it. And the bath mix!
-
-
- You must be logged in to reply to this topic.
-
Ugh, so frustrated! My ferritin was 307 before my last phlebotomy, and now
it’s 427! WHY?!
-
-
This happened to me too! My doctor said my body was pulling iron from tissues after the draw. It
sucks!
-
-
It’s because your body dumps iron out of stores after a phlebotomy. Your body is pulling out Iron to replenish you red blood cells. If you tested before 2 weeks your levels could be higher
-
-
-
You are NOT alone. Mine went up after a draw and I was so discouraged. Keep going, it gets better!
-
-
Did they check your inflammation markers? My ferritin spikes when I have inflammation, not just from iron.
-
-
-
CRP & ESR—those check for inflammation. If they’re high, your ferritin might not be
from iron alone!
-
CRP & ESR—those check for inflammation. If they’re high, your ferritin might not be from iron alone!
-
- You must be logged in to reply to this topic.
-
Who else has tried alternative therapies for HH?
I’ve been using sauna therapy, and I swear sweating helps me feel better.
What’s worked for you?”
-
-
I keep hearing about it so I started doing it at my gym. I do feel better. I hope it helps with my Ferritin levels
-
I swear by it! Red Light Saunas are the best! Steam Rooms as well! No Dr. is going to tell you anything but phlebotomy and medication! I used to listen to everything they said, not anymore and I am healthier because of it!
-
- You must be logged in to reply to this topic.
-
FREE IRON—the most toxic form of iron in your body.
💥 What is Free Iron?
Free iron (also called non-transferrin bound iron, NTBI) is iron that isn’t properly bound to proteins like transferrin. This means it’s floating freely in your bloodstream, causing:⚡ Oxidative Stress – Free iron reacts with oxygen, creating harmful free radicals that damage cells, organs, and DNA.
⚡ Inflammation & Aging – Excess iron triggers chronic inflammation, accelerating aging, joint pain, and disease risk.
⚡ Increased Infection Risk – Bacteria, viruses, and parasites feed on excess iron, making infections worse.
⚡ Organ Damage – Iron deposits in the liver, heart, brain, and pancreas, leading to issues like fatty liver, diabetes, neurodegeneration, and heart disease.🔥 Why Ferritin Doesn’t Show Free Iron
Doctors mainly check ferritin, but ferritin only measures stored iron—not how much free iron is wreaking havoc. You can have:
✔ High ferritin but still overloaded with toxic free iron
✔ Low ferritin but still experiencing iron-related inflammation🚨 Who Should Be Concerned?
- People with Hereditary Hemochromatosis (HH)
- Anyone with fatigue, brain fog, joint pain, or unexplained inflammation
- Those who have had iron infusions or excessive iron supplements
- Anyone with liver issues or infections
Next week, we’ll break down how to test for free iron and what labs to request!
💡 Does your Dr ever talk about anything other than Ferritin? Drop your thoughts in the comments!
-
-
This is SO true my Doctor never looked at anything but my Ferritin. I starting feeling really bad and found out on my own. I really don’t think they know anything but check Ferritin and this is SO rare! Sometimes I feel like we should be filling Medical Neglect on these Doctors, then maybe they would educate themselves!
-
- You must be logged in to reply to this topic.
-
Hi, I just found out I have HH from a 23andme test my Wife said we had to do. Now I am glad I did! I have the H63D & C282Y Mutation. I have a lot of shoulder and hand pain, but I thought it was from playing a lot of sports. Now I am rethinking everything I thought. Could my pain be from this? I played ALL High School sports (Quarterback) and played College Baseball. Could it be iron deposits?
-
-
Yes, it can be for sure! Unfortunately Dr.’s are not that well versed in Hemochromatosis. They just don’t ever test for it. I always went to my OBGYN, with complaints/symptoms so they are going to find something wrong with you in their field. You may have damage or inflammation from sports. If you want to share your test results, I could give you a better answer. If your Ferritin, Iron, and SAT% is high you have a lot of iron circulating around. Looking to bind into things like your joints, and organs. We are always here to help!
-
My Brother also has HH and he was a pitcher in H.S., college and played a little pro. He was scheduled to have shoulder surgery! We also found out from 23andme! He ended up not needing a surgery, that was just pure luck!
-
-
- You must be logged in to reply to this topic.
-
Does anyone donate blood? My Insurance just raised my rates so high for a phlebotomy! I feel like I am getting care vs now being just a donor.. Any donate? Would they do an IV? I need an IV after.
-
-
Yes, I donate. I just find it quick and easy. I was doing at Kaiser, and they had trouble getting blood. Maybe it was just me, but it was much quicker and easier. Plus they actually paid me, $20.00 gift card, Better than the fees the Insurance charges. Try it, maybe with the difference you could get an IV after, maybe they would do it for you. Worth a try to ask.
-
Yes, I have donated before. It was really easy. I went to One Blood , what I really like about them is they do not prick your finger. It’s almost like a blood pressure cuff for your finger. PRO TIP- make sure your finger is REALLY warm, it will help you pass the iron test! I failed the day before and she gave me a break open hot pack for my finger! I passed! I also like to do an IV after, I was lucky they had a medspa place in the same shopping center. So I went over and did the IV after!
-
I have started to just donate every 56 days. I feel like I am helping people because I have a rare blood type, plus I don’t have to worry about my levels all the time. Or worse starting to feel bad, brain fog nausea. I don’t know why I did not just do this sooner!
-
- You must be logged in to reply to this topic.