Decoding Hemochromatosis Stages
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- Опубликовано: 21 окт 2023
- Are you looking at some blood values and wondering if you might have hemochromatosis and what it indicates? My name's Dr. Terranella, and in this video, we're going to look at hemochromatosis stages and look at some of the things that may show up as you're progressing through the stages of hemochromatosis. Well, obviously, you don't want to progress through the stages. You want to catch it early, and so in this video, we're going to look at some of the things that may be showing up at different stages.
Most of the time, most people are going to catch this early if they're actually looking for it, which is what I'd recommend doing. If you have a family history of this, definitely. But even if you have Northern European ancestral genes, it's important to look at this as well.
Reference links:
In this video, we want to look at and understand the hemochromatosis stages, of which there are several, which go from more subtle to more severe complications. Hemochromatosis is a genetic disorder characterized by excessive absorption and accumulation of iron into your body and into the different tissues of your body. If untreated, it can lead to iron overload, which can damage organs or tissues over time. The progression of hemochromatosis is usually divided into four different stages, based on the overall accumulation of iron in the body and the organ damage that is taking place.
I will present the four stages, and just know that each stage gets progressively worse. So things that were present in stage one are also going to be present in stage four, but to a greater extent. You have to remember that as transferrin saturation, which is the protein that carries iron, goes up, it means that incoming iron gets less and less bound up, leaving it free to damage tissues and organs as it is left unbound and circulating in the blood, bumping into things and damaging them.
As the amount of iron in our bodies goes up, it becomes more and more difficult for our bodies to deal with that as the antioxidant systems in our bodies get taxed and depleted. Also, that iron starts to accumulate in tissues versus staying in the blood, but that accumulation process damages those organs and tissues, and that's where the symptoms start to come from.
Okay, so let's look at the actual stages of hemochromatosis. Stage zero is just having the genetic predisposition without any actual problems present.
Stage one is an actual stage, and it is kind of preclinical. This is where there are really no symptoms occurring. Routine lab tests are usually going to be completely normal and there is not going to be any indication of a problem. However, if you do end up getting a transferrin saturation test done, it's probably going to show upwards of 50 to even 55%. The ferritin is going to be normal in this stage when it is early on.
Stage two is when you are starting to get mild iron overload. Stage three is when you have moderate iron overload. This is when you may start to experience some symptoms, such as fatigue, joint pain, and liver damage.
Stage four is when you have severe iron overload. This is when you are at risk for serious complications, such as heart disease, diabetes, and liver failure. So iron accumulation begins here, and it may start to cause early signs and symptoms of organ damage. Those symptoms could be things like joint pain, fatigue, and overall weakness.
At this stage, your lab tests may still be pretty normal, but that serum transferrin saturation is definitely going to be high, around 50, 55% or even higher, and the serum ferritin is going to start to rise and be mildly elevated there. So it may not be outside the reference range, but it's going to be close to the upper end of the reference range, if not above it. You may also start to see some elevated liver enzymes, as that's one of the early places where the iron accumulation starts to hit.
In stage three, there are moderate iron overload symptoms and problems. So there's going to be more pronounced symptoms, whether it's severity in the global scale of those symptoms, and the damage in the body is going to become more evident. Symptoms can include things like abdominal pain, more joint and muscle pain.
Your skin can start to get discolored as the iron can even start to accumulate or deposit into your skin. And of course, there's going to be fatigue and weakness as well. Laboratory tests here are going to start to show more and more elevations of that ferritin. At this stage in the game, it's probably going to be outside of the reference range.
The saturation of transferrin is going to be high, as well as a percentage, you know, north of 50%. The liver damage may be progressing to where the liver enzymes are higher and higher. You may even start to see signs of cirrhosis with low platelets or other liver problems, liver enlargement, et cetera. 
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It's good to see a physician who takes this common condition seriously.
yes thank you
I agree with @Mister_NO Very informative and I'll be subscribing. I had all the symptoms mentioned, progressed to Fibrosis, diagnosed with NASH, and was found to have Liver Cancer. I had Laproscopic Surgery 7 weeks ago and they found Iron deposits on my Liver. I looked back on my tests and was only tested for Ferritin 2x's. Once in 2017 and again 1 yr ago. that seems odd to me since my Enzymes were all over the place as to why they wouldn't have tested for that more. Those ones were normal (152.5 /179.6) but you would think with the link to cancer and all the symptoms I had they would have followed that in testing. Freaks me out to have those deposits. No iron supplements, no iron cookware, no real explanation. Going to look thru your Channel and see if you have more on the tests also. Thank you!
Diagnosed at age 54 exactly 2 years ago. 2x C282Y. Zero symptoms. Ferritin 3800-4500. I had no idea. Random physical. 74 phlebotomies later. Ferritin 35. Macronodular liver with some confluent fibrosis. F4. I take no meds. Feel perfect. Never missed a day of very physical work. I run my own company and am an actor in a Broadway show at high energy 8x a week. Packed with energy and yet have cirrhosis. Blood pressure, cholesterol perfect. All other organs clear. No deposition. It baffles me. But i have to have an mri every six months to check for bad stuff. So weird.
That is weird. Probably helps that you are otherwise healthy. Thanks for sharing
Keep up on your follow ups. Its around the corner . Sorry good luck
Thank you! Lab results are often meaningless without context and can cause a lot of anxiety until you understand the significance of the results.
Yes very important
And most drs dont do a good job explaining
By the way i don't understand how your videos don't have more views as when it comes to information on this subject your channel is one of the most useful and straight to the point channels on YT. If we can help by linking some od your links in our posts on other sites let us know. I've been following you for more than a year and i trully apreciate the information you're putting out. Thank you Dr.
As far as linking, any place you see appropriate and helpful, yes.
thanks for a better understanding as I was tested at 6000mg/ul where the normal range is 24-400! I have a few fairly minor symptoms other than some shoulder pains that I'm not sure is related but apparently i'll be starting with the blood letting soon.
That’s a record! Never heard of one that high.
I have a single H63D mutation and am iron overloading. My ferritin is in the normal ranges, my iron sat 125%, really low tibc, and lots of body aches mainly in my calves and abdomen. But all my liver enzymes are normal. Still waiting to see an oncologist/hematologist but it definitely isn’t fun.
Thanks for sharing. Good luck.
thanks!
Welcome!
Thanks for video I had blood test show my iron overload it’s 475 is it bad , my iron overload because I was over iron supplements now been stopped, will I have chance back to normal if I follow the low iron diet thanks
Thank you for your excellent video, Dr.
I am wondering how hereditary hemochromatosis and alpha-1 work together. I have both. Watching your video I would say i am stage 3. I am so fatigued , hurt everywhere interfering sleep also. I have severe arthritis which makes things more tuff. Stenosis cervical and spinal. My hip needs replacement but I am so against a surgery. My 1st 9 months of phlebotomies were terrible as my blood was so thick and full of particles. It would take 2 1/2 hours to get not even a pint. I started Mediterranean diet minus red meat back then and have had much thinner blood now and only 20 minutes for phlebotomies. I push myself to exercise regular but am so fatigued.
I’m not that familiar with the alpha-1 but it looks like it would make it difficult to diagnose, hemachromatosis apart from genetics. Both are going to put strain on the body and antioxidant systems
Very useful: My iron levels have reached 885 and diagnosed as non-alcoholic fatty acid. 14 Jun I'm in the hospital for a liver and kidney scan and full blood test analysis. I hope to start Phlebotomy soon after, if not, I will have to go private for treatment.
Thank you for the info
High ferritin does not always mean hemochromatosis. You may know that but there is another video on the relationship of fatty liver and elevated carrot in so be sure to check that out. Actually one comes out tomorrow and then that specific one comes out in two weeks.
My iron levels have been in overload since I was a child. Only now am I aware of the consequences. Blood taken for testing yesterday and scans on Friday. Interestly drinking green tea reduced my ALT's from a count of 250 -300 down to 21!
How often were y drinking green tea?@@silent6142
Just diagnosed today .I mainly suffer from bad chronic muscle aches and fatigue.Cook on cast iron a lot too .Should I stop using them ?
If you have hemochromatosis, definitely
This is my problem! Thank you so much for explaining it well so I can take this to my Doctor.Can You show us a menu of kinds of foods we can eat??
Your welcome. On menu... noted will consider it.
@@swintegrative Also My Doctor recently tested me and he says that I do not have hemochromatosis so now what?
@@pattymcclannahan8094 that's good but i'm not sure what your situation / question is. you might want to check out my other videos or better yet playlists on iron and iron overload.
@@swintegrative Also the Doctor said I did not have an iron overload? But the blood bank said I did.🤔
@@pattymcclannahan8094 Did you get the values of the blood test results? If you obtain the results you can compare them with what the lab uses as its reference ranges.
It r helped alot. Thank you. It's a bit scary though can I ask something. Our doctor has. Said my husband should just continue eating the way he has been. My husband likes meat. Three times a day. What would you suggest. Should he change his eating habits or will it not have a big impact on his iron levels? His iron is jut over 400 at the moment
Well that is difficult to say on the individual level. generally speaking if you have the genetics for hemochromatosis and high iron levels you want to minimize the amount coming in. that does not always mean no iron or red meat but means a reduction to what is helping with the management of your iron while also being mindful of other health parameters. this might be something to elaborate more in a video
Thank you so much! My lab test shows transferrin saturation 94%, ferritin 80 and Iron 44. My symptoms are heart palpitations, joint pain, fatigue, nausea and dizzy. Is the next step a retest? Can supplement like vitamin c cause such a high level of saturation? Could this be a normal fluctuation?
I can’t give specific recommendations. always good to recheck especially w high saturation. Vit c can increase absorption of iron
@@swintegrative I totally understand! Thank you so much for your reply, I will try to get a retest in a couple of weeks and stay away from vit c. Have a nice day🌞
My saturation is 72% and serum iron is slightly elevated. Ferritin is normal. My doctor told me my results do not mean hemochromatosis as my ferritin is within normal range. I do have symptoms though. Liver issues and heart palpitations.
I always recommend to my patients testing the the saturation multiple times if remains high it’s a problem
@@swintegrative
Thank you for your reply. Last time it was tested it was in 2009 and it was 68% saturation. So it appears I have been having this high saturation for over 15 years. My heart symptoms started in 2016, but they couldn't identify a cause.
Yep it's damaged my pancreas..I have HH IM 53 only diagnosed 6months ago with ferritin 3000 I've been ill with lots of symptoms for over 10 years 😔
That’s terrible so sorry to hear that but good to get a diagnosis
Hi. Thank you for your videos. I am homozygous for H63D. I had a saturation level of 57% on my last test which prompted genetic testing. I don't see my doctor for 2 months unless something changes. Does this alone confirm stage 1 or 2 hemochromotosis? Thank you.
Best to get that diagnosed by the treating doctor but usually the higher the iron saturation and ferritin the further alone you are. Good luck!
I don't understand my problem, because my ferritin is 226 and my iron saturation and iron level is on the lower end. I also have high liver enzymes and low TIBC. Can you have hemochromatosis with low iron saturation along with high ferritin?
It’s possible for people to have the genetics for it but not have actual iron overload
Can this be something that attacks the kidneys, my dad's brother at 18 died of kidney disease? We are Greek, and though my father's sister brother can't certain leukemia blood cancer runs in there sorry and my grandfather had at my papa I don't know if it was CLL but they all live to the '90s but the cans of very slowly. I have CKD
Yes it can affect the kidneys but more common in Northern Europeans or their descendants
Since 2008 I have had my ferritin level bouncing between 500 and 800. I have fatty liver, migraine and sometimes fatigue. Im 36 now, my family dr told me that at this point I have to be checked out by an specialist to determine if I am positive to hemocromatosis. My question is, if I start the treatment, can organs go back to their normal sate?
If u catch it early enough yes.
Haemochromatosis does not cause fatty liver, that’s more likely to be remedied by diet exercise.
I tested positive for one of the markers on a DNA test from 23 and Me.... do I still need to test myself via lab? thanks
100% there are many different hemochromatosis genetic profiles. See my other videos on hemochromatosis for more details
I consume very little iron. I have many of the symptoms & a genetic test says I have it. Is it possible that I still hoard iron despite taking in very little?
Yes 100% possible
I have high iron level right now for first time ever. Told to see my hemotologist i have for frequently getting anemia. But my ferritin is not high? I am not Anemic right now & I'm not taking any iron right now. So why is my iron really high?
You should look at the high iron playlist for answers / clues on this. I do think that will give some clarity. Ultimately u would have to have a doctor review all your information bc there are multiple things that can influence these levels. Sometimes for women for instance they are menstruating for yrs then they stop and their situation flips.
Eating high meat diet saturation was 55% ferretiun 150s could diet be cause this?
I have seen that happen but always good to verify
I just had lab work done showing I’m between stages 1 and 2, but my healthcare provider told me everything is fine. Is she trying to send me to organ failure? I have already have symptoms.
This kind of thing (staging) can be a bit grey. If you were diagnosed with hemochromatosis and said to be in early stages, that’s good. You could have symptoms for other reasons too. It is really hard for me to say much more than that but you can always get another doctor opinion. I do know that the more testing you do the more clarity you get
@@swintegrativethank you so much for your reply. Thank you for being a doctor who cares ❤ I will be seeking second opinion
I have a question: i've been on 40mg test E3D for 2 months (started with 10/10 symptoms of low t at 570ng/dl total test). Now i feel great, all symptoms are gone, i'm going through the second puberty so to speak, all aspects of my life are better, depression gone, will to live is back, morning wood - daily, gym strentgh and recovery...all great, i feel 15 years younger i sleep 8 hours a day - i feel alive again. All my lab test came back great, test is 1060ng/dl. The only "bad" thing is my LH which came back as < 0.10 out of 1.7-8.6. (which is obviosuly normal for someone on exogenous test). Well my doc is worried by the low lh and he wants me to pause trt for 3 weeks in the next few months so that my "system do net get rusty". Do you think i should change the clinic, because according to everything i've seen and researched during the last two years of preparations for trt ( i'm 42 by the way) i think he's got no clue what he's talking about.
Well, possibly. That is an odd thing to say. Yet there is merit in taking a pause from time to time but not so early in the treatment.
Thats a no brainer lol
I have very bad shoulder pain, could it be related to this condition?
Usually will have more general pain not isolated to one joint
I think you should look at liver/gall bladder. Usually this is one of the symptoms
I have 2 C282Y. I go to a hemotologist. My levels are so low I am currently anemic. After my last phlebotomy I got extremely itchy for 2 weeks solid. I was so itchy it was making me angry. I told my hemotologist about this and she said that she didn't think it had anything to do with being anemic and she has never had another patient have the same issue. What do you think????
Hard to say what the connection is. Seems odd though.
I didn’t want to be anemic so asked my consultant to stop phlebotomies when ferritin was in normal range (200). I’m not sure why so many people allow treatment to take ferritin below 50. maybe they just want to leave a lot of space before it rises above normal range. If they are insisting you keep level under 50 i would, if you are in USA, be suspicious that it is a way of getting money out of you or they are afraid you will sue them if you get organ damage.
@@alanbaker2497 well you also have to consider the iron saturation and the damage that occurs from this. You can have high iron saturation low ferritin at the same time. If iron saturation is normal then ferritin can be much higher.
@@alanbaker2497 Haemochromatosis UK (a charity) suggest to keep both Ferritin and Tsat below 50.
@@alanbaker2497 Apparently, it's because it was assumed that Ferritin levels would rise back up, but they don't always and some symptoms don't correlate with Ferritin levels- more research needs to be done: ruclips.net/video/LYU5ZbzUzWc/видео.htmlsi=N5pDuZcMNUgWscl3
How to fix it???
If u have this diagnosis there is only management not fix. I discuss some of that in upcoming video
Went
My doctor says I have hemochromatosis.. my ferritin level is > 1000 , now .. my liver has elevated alt and ast levels .. please help
sounds like you need to see hematologist, isn't your doctor helping you?