r/Hemochromatosis

Hi everyone. I'm a 27F, and at my yearly routine checkup, my serum iron came back at 50.4 µmol/L (ref 9–30.4). The rest of my results were all good, liver enzymes, kidney were all in the normal range. I was advised to do full iron panel in 2 weeks, which I did in a different lab, because I was sure there was a mixup.2 weeks later, I got the following results:

-Serum iron: 36.0 µmol/L (ref 9–30.4) — HIGH

-Transferrin saturation: 77.92% (ref 12–45%) — HIGH

-TIBC: 46.20 µmol/L (ref 45–76) — low-normal

-UIBC: 10.2 µmol/L (ref 12.5–55.5) — LOW

-Ferritin: 17.10 ng/mL (ref 4.63–204) — normal-low

What obviously confused my doctor is low-normal ferritin level. I will do another iron panel in two weeks, and if the levels stay high, they will order the genetic testing, but with the current ferritin, the doctor believes it's acute and dietary.

The thing is, I don't eat red meat, I don't drink alcohol, out of all iron rich foods, I eat fish and leafy greens once a week.

Vitamin D is the only supplement I regularly take. The collagen powder I bought has 90mg of vitamin C, but I only took it cca 5 times, and not in the days leading up to tests. Both test were fasted (12h prior)

At last year's checkup my serum iron was 23 µmol/L (normal). I donated blood regularly from age 18 until about 2 years ago, when I was turned away twice, ironically, for low hemoglobin.

I know everything will be a lot clearer in couple of weeks, but I would love to know if someone had a similar experience and what was the end result.

I am 36 year old male of Indian origin currently living in US. Recently, I have been feeling lethargic and often feeling the urge to nap every afternoon. My wife has low ferritin levels and is on iron supplementation. I suspected that I might have the same issue and got some labs done privately and was surprised when Ferritin level came back as 860.
After analyzing the results with ChatGPT, I went ahead and had bloodwork done for repeat Ferritin along with Iron and TIBC hoping that the previous result was a fluke. Got the results back with even more shocking numbers.

Ferritin: 876 ng/mL
Iron: 192 ug/dL
Iron Bind.Cap.(TIBC): 226 ug/dL
Iron Saturation: 85 %
UIBC: 34 ug/dL

This freaked me out and I immediately started looking for Gastro/Hepatologist appts but its been difficult to find any slots quickly especially without a referral. For now, I booked an appointment with my PCP for next week.
My father expired at fairly young age of 60 due to Non Alcoholic Cirrhosis. There is no diagnosed history of HH in my family but now I am heavily suspicious that this could be root cause of my father’s illness. Luckily, all my liver enzymes are in normal range for now.
Is it fine to wait for my PCP appt or does these numbers need more urgent evaluation?

I am really not well, and just need advice until I can get to the blood doctor on Monday…
I have lost weight, I am always agitated, always getting sick, body aches, muscle loss…

I often go over my blood tests myself because I don’t trust my doctor anymore, and something is not right.

Today I got back my tests from this week and they are still not good.I continue to have high ferritin and low iron.

I even found a test stipulating that I need testing for Haemochromatosis from a year ago, along with checking for liver damage. My doctor has never mentioned this to me!

My last test came back today and my iron is 9 and ferritin 311. My body aches, I have pain in my kidney area with a bladder infection, I am tired, bruised all the time, and i literally feel 80years old, (I am 50). My platelet count was always high too. Now my lymphocytes are low.

My doctor always says “your bloods are fine”. So I asked for a referral to a haematologist months ago and my appointment with the nurse is Monday.

My liver test are not terrible, but I am still worried.

I cannot stop peeing…it has been getting worse. I am also getting UTIs a lot. I am on antibiotics but my lab cultures just came back and said that I don’t even have a UTI.

I need to be near a toilet all day today. I am not drinking anymore than usual, but I have no idea where all this pee is coming from. Is this another symptom of possible Haemochromatosis?

Also, do I take some iron tablets in the meantime or will this make things worse?

like I said, I do have an appointment on Monday. If I hadn’t of requested it though, who knows?

Sorry, but I am panicking a bit. My mum just got over lymphoma and that is also in the back of my mind.

I’m 45 and genuinely starting to feel scared/frustrated because nothing makes sense anymore. My ferritin was 0.5 and I went through 3 months of iron infusion/transfusion treatments and it barely improved.
The confusing part is:
My periods are LIGHT
No stomach pain
No burning
No weird stools/smells
No appetite issues
No obvious bleeding
But I’m dealing with:
Extreme fatigue
Hair loss
Brain fog
Vision suddenly getting horrible (feels like I aged 40 years overnight 😭)
I honestly expected some major stomach symptoms if this was an absorption issue, but I have almost none. Has anyone had ferritin this low and found out the root cause was something unexpected? H. pylori? Celiac? Autoimmune? Pernicious anemia? Something else?
I feel like doctors just keep throwing iron at me without figuring out WHY this is happening. And I feel like I have zero symptoms of and issues that causes low ferritin. And I’m terrified of cancer who isn’t but 😭😭😭.
I Would really appreciate hearing from anyone who’s been through something similar.

My son (17yo) is a competitive runner with hemochromatosis. His total iron (218) and blood saturation (93) is very high, but he has been having so much fatigue due to LOW ferritin (22). Does anyone know how to get his body to store the iron in his blood stream as ferritin without increasing his iron intake? His sports medicine doctor wants him to take an iron supplement since his ferritin is so low for a runner, but hematologist says no. Appreciative of any input or suggestions. Thank you!

My ferritin was more than 100 and my saturation 55%. So I went to get a phlebotomy done, and I asked the nurse how much blood was being removed she said 1 unit and clarified that one unit is 500mL. She said that anytime someone gets a phleb, it is always just 500mL removed.

My question is, how do patients know if that is sufficient unit or mL’s removed based on what our pre-phleb levels are?

Shouldn’t there be some custom dosing of how much blood gets removed based on our levels?

Because if so… my hemotologist’s office has Not been doing that. …Has anyone get custom blood removal dosing… or like, … a post-phleb blood check of the ferritin and saturation to see if the phleb has removed enough back to normal range?

I think it seems that the few times I have recieved phlebs, some I don’t know how much my levels exactly lowered post-phleb, they just end up only removing barely enough to put me in… borderline normal levels.

My wife has been feeling dizzy the past month. She’s usually not one to brush aside issues/symptoms but it was bad enough this time for her to visit urgent care.

They did a blood test and this is the iron panel:

ferritin: 40.2 ng/ml
serum iron: 191 mcg/dl
tibc: 265 mcg/dl
uibc: 74 mcg/d
iron saturation: 72%

The clinic wants to repeat the blood iron panel and do HFE gene testing.

We’ve scheduled a follow-up for 6 days after the first bloodwork. Is this too soon?

Are we taking the right steps?

Hey yall,

Im Irish (M29) and I have been gifted with the Irish curse! Today I got my results back and I tested positive for Hemochromatosis. I feel a sense of vindication and relief! I have been sick regularly with no explaination until now. I had to push and push for the test, as the doctors said I didnt qualify for the test. Im so happy for sticking to my gut and start the process!

Update* I got my results today. I have C282Y homo.

How long does the phlebotomy usually take? I have my first one on Wednesday and then have my liver MRI on Friday.

Also, does anyone know of women’s multivitamins that don’t have iron but are pills not gummies?

Edited to add: I’m in Colorado, United States

• Ferritin 15 (38-380)
• Transferrin % saturation 58% (20-48%)
• Total iron 244 (50-180)
• TIBC 421 (250-425)
• labs done in morning while fasting
• Normal CBC (including MCHC, RBC, MCV, hemoglobin) and CMP (normal ALT and AST) except for high bilirubin (but he has Gilbert's syndrome confirmed with genetic testing)

This is for my husband

• 39M
• on testosterone replacement therapy (can cause low ferritin by promoting lots of red blood cell production) and used to have high hematocrit from that, so he gave blood 5x during 2023-2024 but has given blood only one time in the past two years, six months ago
• He was extremely alcoholic in the past (sober 8 years now) and likely had decompensated liver disease years ago but was able to get liver compensated again with dietary/OTC changes and never got a real diagnosis (took a long time to see a hepatologist and was doing a lot better by that point)
• Lots of alcoholism, liver disease, cirrhosis, and dementia on his dad's side
• He is European (German, Swedish, English/Irish)
• Symptoms are persistent fatigue, brain fog, knee problems
• He's never taken iron supplements but has been taking 1000mg Vitamin C most days

I saw another post about low ferritin and high transferrin saturation that led me to a Chris Masterjohn video titled "High iron saturation but low ferritin?" where around 10:00 in the video he says that he generally considers labs like these (saturation >55% and low ferritin) an early stage iron overload?

update: he had a positive fecal occult blood (home FIT test) to check for GI bleeding potentially causing the low ferritin, so between likely iron deficiency anemia, positive FIT test, and alcoholism history (can raise risks of colon cancer) he's gotta get screening colonosopy to test for colon cancer now.

I'm a 37yo woman who used function health with no specific goals in mind - just wanted a bunch of data to establish a baseline as I've been focused on improving my overall health recently. However, I was surprised to see my ferritin and saturation levels come back abnormal:

1. Ferritin

   Result: 311 ng/mL - Lab Reference Range: 16–154 ng/mL

2. Iron % Saturation (Transferrin Saturation)

   Result: 62% - Lab Reference Range: 16–45%

3. Serum Iron

   Result: 161 mcg/dl - Lab Reference Range: 40–190 mcg/dL

4. Total Iron Binding Capacity (TIBC)

   Result: 259 mcg/dL - Lab Reference Range: 250–450 mcg/dL

Is the next step genetic testing? I'm asking because researching this, it seems like a lot of people who have HH have ferritin values in the thousands. I'm just not sure if this is a borderline thing/false flag.

Other info worth noting:

I'm an American with northern European (Irish/English) ancestry.

No recent infections. My CRP was 1.3. However, in the last year I've gotten way more viral infections than is usual for me - In the last 14 months or so I got sick three times due to travel. I hadn't been sick in years prior to that despite a similar amount of travel.

I've had an IUD placed continuously for about 20 years at this point, and while I still get a period, it's a negligible amount of blood.

I do experience some diffuse symptoms that could be related to iron overload, but nothing severe. I had no idea what HH was before this blood test.

My liver values are all in the normal-ideal range. My family does have a history of liver issues, but AFAIK nobody has been diagnosed with HH.

Just curious if anyone in a similar bucket got a diagnosis of HH before I bring this to my PCP.

Hi,
I just visited the hematologist a few days ago and got my labs done. Originally I was sent to her because my iron was 300 ug/DL, but now it seems to be 27? Ferritin and hematrocrit are also low. For context, I have had a 3 month long period that thankfully stopped. (Yes, bleeding for 3 months straight.)

I think she ran the HH gene test just to see, and it looks like she mentioned that I did have it, but it was high when I was bleeding, and now low that it has stopped. 2 weeks before we saw 300, my levels were 67, so a little low, but not suuuuper low like now. Is this even possible???

Roughly how long does it take to get the blood test results back for Hemochromotosis? My other lab tests came back except this one. I thought I read somewhere that it could be weeks (but I may have misread it).

21 FTM (on T non-menstruating for 5 years, PMOS before that)
Ferritin 971
TIBC 40
Iron saturation index 0.88

My mom was diagnosed around a year or two ago, in her early-mid 50s. Because it’s genetic, I was also tested, and I also carry it. I Recently went to my doctor because I’ve been so fatigued lately- terrible brain fog, never feeling rested, exhausted all the time, (with other symptoms that I’m not sure are related) so he wanted to do a general blood panel to start, and I got my results today. I was hoping it wasn’t hemochromatosis causing problems because I’m barely 21. I wasn’t expecting it to affect me so young.

I’m just really intimidated right now. I don’t know what to do with this information. I’m going to struggle with getting phlebotomies but I’ll eventually adjust. I just know close to nothing about this.

Any support would be appreciated

I did a donation at red cross 10 days ago and got lads right away. Ferritin down 300ish points, good news.

Yesterday I had my 1st phlebotomy. I went to get labs. They told me I couldn't get them until Monday because me Ferritin and iron wont go down for 36-72 hours. Ferritin def went down the 1st time, maybe its iron that takes time?

Is this typical? Thoughts please :)

I've read that GLP1s lower ferritin, iron saturation and help with inflammation, protect the liver and help lettingnthe liver heal (i have a fatty liver to go with my HH diagnosis).

Anyone take them to help eliminate HH related iron issues?

My 1st blood donation lowered my ferritin by over 300 (900ish to 600ish ) points and iron saturation went from >88% to >87% but I want faster because I'm a greedy man ;)