Decoding Hemochromatosis Stages

[@antinatalist9995]

It's good to see a physician who takes this common condition seriously.

[@swintegrative]

yes thank you

[@thegreatkatsby]

Thank you! Lab results are often meaningless without context and can cause a lot of anxiety until you understand the significance of the results.

[@swintegrative]

Yes very important

[@carmella88]

And most drs dont do a good job explaining

[@Mister_NO.]

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.

[@swintegrative]

As far as linking, any place you see appropriate and helpful, yes.

[@lewiscleale5236]

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.

[@swintegrative]

That is weird. Probably helps that you are otherwise healthy. Thanks for sharing

[@tameramurphy8188]

Keep up on your follow ups. Its around the corner . Sorry good luck

[@maryshores6818]

Sounds like you have a good doctor who keeps checking you out.

[@survivormary1126]

Yikes! I hope you don't drink at all. Maybe on a special Holiday but that, sugar, high carbs, and bad oils you should run from. I felt fine except for being very tired and they found Cancer.

[@lewiscleale5236]

@@survivormary1126 NOT a drop. Was never much for alcohol, thankfully.

[@whatdidyouthinkwouldhappen1203]

I appreciate this video so much. I had to find my own information and this helped. My doctor said unless my Ferritin was higher and I was sicker they don't do anything but monitor people. I never go to the doctors because I am never sick but this HH took the energy right from me. I now donate blood and it has helped but I am pretty much still on my own because my doctor says he knows nothing about HH. I was referred to a Hematologist but they have not gotten back with me in 2 years to even make an appointment.

[@swintegrative]

Oh wow that is terrible 2 years!? Well hopefully it is under control now

[@chimonade]

Thank you for this video?Can diet help? If so, please could you do a podcast on it? I have the disease and dont cope well with phlebotobomies.

[@wmauibill]

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 ?

[@swintegrative]

If you have hemochromatosis, definitely

[@lisamcmullan6484]

Yes

[@michellejackson9699]

Besides whole blood donation, is platelet-only donation or chelation of some sort effective in lessening the symptoms of hemochromatosis? I've been diagnosed with heterozygous hemochromatosis, so I really don't know how much intervention, if any, that I should seek. :\

[@swintegrative]

Your iron saturation and ferritin should guide you on that and your hematologist. In terms of platelet donation… no that will do nothing for you.

[@michellejackson9699]

@@swintegrative That's good to know. I appreciate you sharing your expertise!

[@silent6142]

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

[@swintegrative]

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.

[@silent6142]

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!

[@Fran-fd6wu]

How often were y drinking green tea?​@@silent6142

[@belizejuliette7223]

How to lower the livet enzyms? My Fe is now normal but my ALT is getting higher and higher? How to manage the the joint pain?

[@wheatfieldproductions1564]

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?

[@swintegrative]

If u catch it early enough yes.

[@alanbaker2497]

⁠Haemochromatosis does not cause fatty liver, that’s more likely to be remedied by diet exercise.

[@minniemouse625]

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?

[@swintegrative]

I can’t give specific recommendations. always good to recheck especially w high saturation. Vit c can increase absorption of iron

[@minniemouse625]

@@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🌞

[@mammamia200]

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.

[@swintegrative]

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

[@jasperabura3855]

does supplementation with the zinc and copper helps to clean the blood or the zinc sulphate, please let me know as i am taking zinc and copper and previously been diagnosed with the heart problems and diabetic

[@Chris_Faraday]

Yes colloidal copper is best take zinc Iodine Potasium and Magnesium help

[@survivormary1126]

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!

[@CesarNostradamus-wj9uq]

My dad has three types of cancer and died 7 weeks later. He really didn’t take care of himself but this is freaking me out.

[@survivormary1126]

@@CesarNostradamus-wj9uq They have tried to link cancer to heredity. Overall since we all have cancerous cells in us all day every day, with our immune system fighting it, is mitigated with a healthy diet and lifestyle. I'd be looking more at common denominators relating to that and environment than driving yourself nuts that it's inevitable - because it's not! Sorry about your Dad :(

[@razedbywolves8505]

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.

[@swintegrative]

That’s a record! Never heard of one that high.

[@joeslater1904]

​@swintegrative isn't the 24-400 range in ng/ml ? His measurement is mg/ml. Or am I mistaken ?

[@razedbywolves8505]

@@joeslater1904 ug/L so it's micrograms, I believe ng would be nanograms? so my original test at 6200ug/L equates to 6.2mg/L

[@lewiscleale5236]

@@swintegrative I've seen a man in England with 19,000 ferritin.

[@rachellizzie889]

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?

[@swintegrative]

It’s possible for people to have the genetics for it but not have actual iron overload

[@mollymcfabulous]

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.

[@swintegrative]

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

[@mollymcfabulous]

@@swintegrativethank you so much for your reply. Thank you for being a doctor who cares ❤ I will be seeking second opinion

[@lesblack413]

I find your information very interesting and value your knowledge in this matter. My GP says my iron / ferritin levels are around 1,400 and has advised me to see a gastroenterologist - for which I have I have made an appointment. I don't have any of the known effects or symptoms. I am also confused as I have been having regular yearly checkups for more than 25 years - including blood and urine tests. I was diagnosed with bladder cancer about five years ago and had to go on a course of BCG (Oncotice) instillations. The cancer is in remission and I feel fine - but am now having a check cystoscopy only ever 12 months. The checks started every 3months, then every 4 months, then 6 months now 12 monthly. Prior to each check cystoscopy I had blood and urine tested. With so much testing, I don't understand why the iron / ferritin problem was never picked up. I am a 78 year old healthy male and weigh 66 kg. I am also never sick. I will know more after visiting the gastroenterologist 4 four weeks from now. Thanks again for your advice.

[@swintegrative]

Thank you. Yes more than likely it was not checked previously or at least not very often.

[@Andrea_22222]

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?

[@swintegrative]

Yes 100% possible

[@LB-sw2km]

How to fix it???

[@swintegrative]

If u have this diagnosis there is only management not fix. I discuss some of that in upcoming video

[@TrudyContos-gq1bw]

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

[@swintegrative]

Yes it can affect the kidneys but more common in Northern Europeans or their descendants

[@FollowPathfinder]

Greetings from the Czech Republic and thank you for this video. I don’t know if I have this ilness yet but I’ve been feeling very weak, I have mental fog, fatigue all the time. I took a blood test a few days ago that just showed 55.1% of transferin saturation and also slightly lowered function of my kidneys compared to normal values from two years ago. But ferritin is only 180 ug/l. Blood drainage seems to be pretty simple solution, how often do you think pacient has to do them?

[@swintegrative]

Hello, you should have your doctor follow your numbers after the blood donation to determine that.

[@lynetteobeck262]

I started out with a phlebotomy every 2 weeks, a pint of blood taken with each visit to the infusion clinic it then went to once a month for 3 months and now after 6 months I go every 2 months . You must have close follow ups with your doctor for you are walking a tightrope with blood letting so making sure levels do not dip too far down for hemoglobin,red blood cells and platelets . Frequent blood tests are needed and close monitoring under a hematologist care is a must to keep your iron overload under control and other blood levels within the normal range.

[@swintegrative]

@@lynetteobeck262 yep thanks for sharing

[@janineclaassens9019]

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

[@swintegrative]

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

[@yessyt78]

Eating high meat diet saturation was 55% ferretiun 150s could diet be cause this?

[@swintegrative]

I have seen that happen but always good to verify

[@deborahmcnaughton4394]

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?

[@swintegrative]

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.

[@familyofislam]

I have very bad shoulder pain, could it be related to this condition?

[@swintegrative]

Usually will have more general pain not isolated to one joint

[@jonahestanislao]

I think you should look at liver/gall bladder. Usually this is one of the symptoms

[@chuyenchan5654]

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

[@lisamcmullan6484]

No it's not that bad workable on doctors very dismissals over it inform yourself and work on what you can do diet wise

[@KevinCain-n3n]

What was your symptoms my numbers at first was almost thirty eight hundred

[@mikesolis2007]

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.

[@swintegrative]

Thanks for sharing. Good luck.

[@MichaTheLight]

The trait developt in Yamnaya ppl cause drinking a lot of milk over 1 Liter a day reduces iron absorption. Children of the Yamnaya were sometimes anaemic. So the trait to store iron better was an advantage and bc ppl didnt exceeded the age of 50 it rarely became a strong issue which could impair survival and reproduction

[@swintegrative]

Thanks for sharing 👍

[@user-wb4ty2ye7s]

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????

[@swintegrative]

Hard to say what the connection is. Seems odd though.

[@alanbaker2497]

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.

[@swintegrative]

@@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.

[@antinatalist9995]

@@alanbaker2497 Haemochromatosis UK (a charity) suggest to keep both Ferritin and Tsat below 50.

[@antinatalist9995]

@@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: kzbin.info/www/bejne/goq4Zo2Yr7qtjcUsi=N5pDuZcMNUgWscl3

[@adriaticseaeyes]

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

[@swintegrative]

100% there are many different hemochromatosis genetic profiles. See my other videos on hemochromatosis for more details

[@lynetteobeck262]

Yes,yes,yes follow through , I tested for one but you can have an autosomal dominant variant. I have had symptoms for over 15 years with body aches, joint pain , elevated liver enzymes,now diabetes, I hurt so bad even my hair hurt. The damage was done in some instances and is permanent but liver enzymes have come down and only one is slightly elevated . I see a hematologist and get routine phlebotomies which has helped and I restricted myself from red meat and other high iron foods or cookwear. This genetic disease cannot be taken lightly so please follow through .

[@adriaticseaeyes]

@@lynetteobeck262 thank you so much for sharing your experience!!! I will and thanks so much

[@adriaticseaeyes]

@@lynetteobeck262 I have every single one of the symptoms, you just posted above and hypothyroidism, as well as inflamed liver, and sometimes painful spleen!

[@Bonnie-ig9pu]

I have one of each genes. Diagnosed when I was 41. I'm 67 now and have uncontrolled diabetes.

[@Sisinaify]

Thank you for your videos, Dr. Terranella. I found out about my hemochromatosis via DNA test. I've had my first appointment and was told my numbers aren't high enough to get phlebotomy (iron and tr.sat are high, ferritin close to higher border of "normal"). What do I do? The only option I'm not ok is to wait till is bad enough. I'll do literally anything to feel better. In one of your videos you recommended vit. E and glutatione, so I bought those. I was reffered to a hepatologist so I'll se if the growing trend has changed.. The question is: what else I can do to prevent iron accumulation?

[@swintegrative]

Yeah that can be tricky but i think diet is key. Check out my video on best diet for iron overload.

[@Sisinaify]

@@swintegrative I will! Thank you!

[@whatdidyouthinkwouldhappen1203]

I read your post and sounds like my story. I decided to start donating blood on a normal basis until I could see my doctor and talk to him about it, it took a few times but my iron levels are good now.

[@swintegrative]

@@whatdidyouthinkwouldhappen1203 great well it is still good to have a doctor monitor and follow you.

[@whatdidyouthinkwouldhappen1203]

@@swintegrative I am still working on getting that appointment with a Hematologist, they must be really busy.

[@Mister_NO.]

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.

[@swintegrative]

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.

[@b3l3ka5]

Thats a no brainer lol

[@michellejackson9699]

Thanks!

[@swintegrative]

Welcome!

[@Jay..Darn101]

Im 38 was having tests from 2018 and sent this year for 1 unit of blood taken per week. My highest numbers was 1298 and or around that. Been going all year now and my last reading was 140. Apparently when i get to 50 should be 1 unit of blood every other month.

[@swintegrative]

Thanks for sharing and that sounds about right although it does seem like a lot of blood donations

[@Jay..Darn101]

@swintegrative I'm not sue if it's alot just so as my doctor says. I'm in England don't know if it's different treatment?

[@jacoblas1371]

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.

[@swintegrative]

I always recommend to my patients testing the the saturation multiple times if remains high it’s a problem

[@jacoblas1371]

​@@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.

[@lewiscleale5236]

@@swintegrative What if, for instance, ferritin is under 50, but saturation is at 70? What would you recommend?

[@pattymcclannahan8094]

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??

[@swintegrative]

Your welcome. On menu... noted will consider it.

[@pattymcclannahan8094]

@@swintegrative Also My Doctor recently tested me and he says that I do not have hemochromatosis so now what?

[@swintegrative]

@@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.

[@pattymcclannahan8094]

@@swintegrative Also the Doctor said I did not have an iron overload? But the blood bank said I did.🤔

[@antinatalist9995]

@@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.

[@demophobie2405]

My 3yo daughter has a congenital sideroblastic anemia (XLSA R227C) which needs blood transfusions every 3-4 weeks since birth. The iron overload caused by the transfusions leads to a vicious circle. Blood formation is getting worse and it is becoming increasingly difficult to try other therapeutic approaches (such as pyridoxine). We are now trying to remove the iron using chelators and return to a normal state to try things. Iron is the toxic factor for blood here.

[@thehimalyangamer3896]

This time what type of treatment doctors are providing please tell

[@demophobie2405]

@@thehimalyangamer3896 I dont understand. What do you want to know.

[@thehimalyangamer3896]

@@demophobie2405 any iron overlad

[@joannedavies-tz5kc]

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 😔

[@swintegrative]

That’s terrible so sorry to hear that but good to get a diagnosis

[@Kaszubito]

thanks!

[@swintegrative]

Welcome!

[@MichaTheLight]

3:28 First stage Ferretin saturation over 50%

[@tameramurphy8188]

Went