Hemochromatosis - My Iron Overload Story (2019)
2019 ж. 5 Сәу.
98 865 Рет қаралды
I recently found out I have a condition called hemochromatosis (iron overload) where your body absorbs more iron than it needs. I created this video to tell my hemochromatosis story and raise awareness of the condition.
In this video you'll learn:
- What led to my diagnosis
- What I learned about hemochromatosis
- How I adjusted my lifestyle to live with hemochromatosis
- How my treatment and recovery is going so far
- Weekly phlebotomies anyone?
All this as seen through the eyes of an American living in Japan.
High ferritin can be also false positive, meaning it doesn't mean you really have an iron overload, but be a marker for inflammation.
I had a test for Potassium that was off thee charts high. Flipping out researching it went back for another test days later and it was normal. Very common for bad tests.
Let me tell you my story. My ferritin was1700 in 12/2020 Doc and I blamed on supplement. march 2022 ferritin was 1700 ,again we blamed on red meat. in a mean time I experience gout. 3/2023 3month ago my blood work was so bad, ferritin 920 ALT and AST was like 200 Thyroid hormone was zero, worst of all HgA1c jumped to 6.9 .My oncologist started phlebotomy 250ml/month(concerning my low WBC and Low Neutrophil count) I had total 3 phlebotomy total blood removal 250 X 3 = 750ml. I was so desperate to become well, I started Carnivore diet + intermittent fasting on 3/22/23 . 9 weeks later I had my blood tests. ALT.AST normal,Thyroid normal, ferritin was 73, HgA1C=5.1 also lost 20lbs without trying too hard, lost 6 inches on my waist. (I do not have Hemochromatosis gene) The result was pure luck, it was not anyone's recommendation other than KZhead KenBerryMD. I am so happy to have found the way to regain my health.Doc said three phlebotomy did not lower my ferritin level. Something was causing inflammation and the cause was eliminated. In my case the cause of inflammation was Carbohydrate!
I love these Carnivore testimonies. ❤ I'm seeing them EVERYWHERE!
Everyone is DIFFERENT. I don't buy it in any way that just eating meat is ok. Maybe for a ht minute but in thee long run it can't be good. You also only get to an oncologist after you have Cancer that I know of. High carbs def bad especially if they are mostly processed foods. @@sparrowt4082
Wow.. Thats quite amazing...
Thank you man to share your experience with others its really useful
Thank you for such a great informative video .. was even humorous at times . Thank you again !
THANK YOU! I am starting this journey... Your video helps a lot.
Thanks for this video, it is so informative, I learned a lot!!!
Thank you for sharing this video. I really appreciate it.
Nicely done.... Thank, you were very clear and understandable....
LOVED THIS VIDEO. THANK YOU SO MUCH.
Thanks for the story and the helpful info!
Great video!! Thanks for doing this. Yes lets keep raising awareness!
Thanks for your video Rich, just got the same diagnosis :)
Thank you. This was most enlightening my friend. Stay well.🙂
Thanks for your video, I hope you succeed in your goal for lower iron. Will be good to see an update
Thank you for this. Take care and God bless
This is an amazing testimony! Thank you
Thank you for sharing this information with us. ♥️✋ Much love and wishes for good health
Hey Rich thanks for a great video.
Thank you for sharing your story. I was recently diagnosed with Hereditary Hemochromatosis and it has been an interesting process going through treatment.
THANK YOU SO MUCH FOR THIS VIDEO! 💕
Glad to found it helpful Brenda
Thank you so much for sharing your story, it’s been very helpful God bless you.
Thank you for sharing your experience, very helpful information. Wish you all the best.
Hi Rich, I first watched your video about 9 months ago and it was very informative. Will you do an updated on your progress please?
Thank you for this video and sharing your experience. I guarantee you are saving lives. I wish you all the best in health and happiness.
Thank you for taking the time to make this video, much appreciated.
Sure thing A Celis, glad you found it helpful.
Such an old video but so helpful thank you 🙏 hope all is well with you now.
Great story. I hope you are well.
Amazing story! Very informative. Thank you for sharing. I'm curious about my Ferritin levels now and will get them checked.
Thanks for sharing your story!
20 years ago my ferritin level was over 3000. It was off the scale. Still here, albeit with numerous ongoing health issues and operations. 75 yrs old now. The fifteen first years were the worst. Pain, opioids, chronic fatigue. I made it through and in my bonus life. I don't have high expectations - not able to do much, but I have someone to love, something to do and something to hope for, so I live thankfully. I am content.
Cod liver oil can send ferritin levels soaring.
God bless you
@@michellemcdermott2026 God has done that, tks. Give thanks in EVERYTHING. Very important. Doing that has made this life a most interesting journey. Looking forward to the next.
@@steinarbruun3852 me too
@@michellemcdermott2026 Do u have Iron overload and always hungry ?
Great info, and great job self-correcting your diet. I so enjoyed this> Thanks
Thanks!
That was a very informative video. Having just been recently diagnosed with haematomacrosis and not yet had a venesection arranged. I too am worried about my low blood pressure but due to a leaky valve in my heart and SVT I have to have it done in a hospital environment incase they cause an arrhythmia. Did you take aspirin prior to your venesection? I read that it makes it easier for the blood to come out.
Thank you for the information. Very helpful and informative.
I have your mindset your video was extremely helpful. Thank you thank you thank you.
Hi Rich, how are you going now a few years later ? going through the motions now but only at the start of the journey. Thanks for sharing this.
I like him very positive and well spoken
Thank you for your informative video.
Thank you so much! Very helpful information and i do hope you’re blessed with good health! Love!
Thank you! I enjoyed watching your video (actually had several good laughs). A family member has hereditary hemochromatosis. I tested myself, and I do not have it, but acknowledge that I may be a carrier. So awareness is needed!
Very educating ,thanks for sharing
I have hemochromatosis & have been ignoring it, after seeing your video im going to the doctors again, thanks for sharing this. Godspeed
Thank you for this. Did you ever find out why your blood pressure was low?
Thank you for your video, i just discovered i have it, my iron is high for almost 10 years, my Dr never told me about it until I asked to be tested, hope u feel better since is almost 3 years u made this video!🙏
Thank you so much for doing this video!!! It was extremely helpful and I wish you the best on your journey!
Thanks! Just went in for a checkup blood test today and will get the results by the end of the week. Feel a lot better now that the phlebotomies are over and I'm well on the road to recovery (if not fully recovered - gotta wait and see the test results)
Thank you Rich for sharing your story. It has helped me with understanding my lectures on Iron overload and Hemochromatosis. I hope to help persons with this condition in the future!
A white guy, with a Japanese accent?
I have a similar story Rich, totally didn't see this coming. High Liver Enzymes, some fatigue, but it was caught early. So glad for amazing Health Professionals.
I have the same story as you. Good luck.
@@peterjohnson8469 Do u have also High hemoglobin ?
Thanks so much for this video...I have had elevated liver enzymes for a about 20 years...tested positive for both hemachromatosis genes...iron levels have been slightly elevated....just went for a liver ultrasound and awaiting the results of that...I will be going on a more stringent weight loss program through a dietician in November and doing everything I can to get things back on track...don't have all the information yet but I also believe in radically taking the bull by the horns and doing whatever is needed to restore one's being to optimal health.... mentally, spiritually, and physically. All the best.
Thanks for the comment and wish you the best in getting your liver enzymes down. I also admire your gung-ho spirit and taking the steps you can now to improve your health, even without all the information. I'm a big fan of the "ready -> fire -> aim" philosophy, where you do enough preparation and due diligence to get started, then actually go for it and adjust based on what you find along the way.
Thank you for this. Very helpful. My blood pressure is also very low.
Thanks! I have a very similar story, but I got a genetic test that confirmed I have the homozygous C282Y mutation that causes classic heredity hemochromatosis. In other words, the iron overload mutation came from both of my parents. In 1996, archaeologists discovered the genetic source of iron overload. Bronze Age Viking skulls found in Scotland had intact DNA with the C282Y mutation that causes iron overload.
Thanks, Rich! This video is very informative. Yesterday (3-4-24), I had the result of my hemachromatosis test at 794 from the previous 791 two months ago. I wish you have have an updated video on the same topic. Thanks, and God Bless!
Thank you for your information in non-medical language. Hope you are feeling well.
Thank you so much for your story Rich! Will you be posting a video any time soon on your progress? Hemochromatosis is such a complex condition, it's nice hearing people's stories like that of yourself. My husband and I are currently looking into whether or not he has it.
why you both doing screening???
@@doctoratiq😂👍🏼
Thank you so much for sharing your story, have been feeling very fatigued lately even though I lead a healthy, actuve lifestyle. Blood tests showed my iron levels are way above the acceptable levels, my journey begins with more tests and bloodletting in the new year. Had no idea high iron levels were of concern until recently, great to see people trying to get the message across.
Please share how are you now .
@chuck4abuck1 had my latest blood tests 2 weeks ago, after several blood donations my levels are right where they should be, feeling much better.
Thank you you are Soo brave God bless you
What a great explanation of iron overload. I was told there wasn't anything to be done about it, but you've gotten your's under control, that's really encouraging! Thanks so much!
Thats because the cure is blood letting. Which isn't something that can be sold by pharmaceutical companies.
Hi Rich thanks for sharing I've got a 90% polycythaemia diagnosis, but a Dr I work with says I might have hemochromatosis also as my ferritin is very high but folate was normal, thanks for sharing your story :)
Hi Faye, thanks for sharing your story as well. From my understanding high ferritin is one sign of hemochromatosis, but there are other factors to take into account as well (such as transferrin saturation). That's why, despite my high ferritin levels, my doctor wanted to take a liver biopsy to confirm his hunch before starting phlebotomy to treat hemochromatosis. My dad's DNA test showed that he is likely an unaffected carrier of hereditary hemochromatosis, thus I got to skip the biopsy and head straight to phlebotomy. Lucky me :) Wishing you a speedy recover for polychythaemia and (potential) hemochromatosis!
Awesome man, I appreciate you, and you explained very well, may Allah protect us from all kinds of deceases
Thank you Rich.
Very informative video Thanks!
I’m iron deficient! I thought I could share why my iron levels are so low to help you guys. I’ve been taking high dose turmeric tablets for inflammation and that has severely stopped me absorbing iron. Research it. Good luck!
How much is the doseage?
Often the issue is copper not iron.
Calcium and tannins in tea inhibit iron absorption, while vitamin C facilitates its absorption. Cooking in cast iron also helps. I recommend you look into what you’re eating and how you’re eating. Food combinations can make all the difference.
@@Sufficient4UsIsAllah Tannins only inhibit absorbtion of non heme iron. It's important to make that distinction.
Thank you so very helpful video. My brother just been diagnosed with this! We had no heard of this before. Now going to get family checks done. Very useful helpful information on how you reduced your levels. Wishing you healthy happy time ahead!
Thank you for your video. You have provided a format for how to change your lifestyle once you know you have HFE. My doctors were always treating symptoms. It wasn't until I went to see an endocrinologist that immediately diagnosed my HFE based only on the bronze coloration of my skin. the genetic testing confirmed the H63D hetero gene.
Very knowledge story…❤thank you 😊
Interesting and well spoken.
I have Hemochromatosis as well. Luckily found out sooner rather than later. Also being checked for diabetes. I'm going to try IP6 and blood letting and maybe donating blood. I was taking turmeric for symptoms before and it seemed to have helped, but I didn't know I had it at the time. Going to start taking turmeric daily again. Also going to cut out most foods and supplements with iron. It's definitely good to know that I have it so I can take action now. I found out the nutritional yeast I just started taking has too much iron in it for me and I started having symptoms when I took some of that and had eggs and spinach and other foods with it.
Hi I'm a month away from my 38th Birthday. I have just been diagnosed with haemochromatosis. I have had so much anxiety about it, as I'm feeling so unwell I worry I'd feel this way forever. Thanks for making this video it helps to know I'm not alone. Even if I'm all the way in Australia 😊
How are you now?
Hey Leah. I know your message is 2 years old but I'm 38 and my Doc just told me my iron levels are really high. I got freaked out when I discovered my Hemotologist was in a cancer center. This video really helped me feel better. I'm wondering how your experience has been?
how high?did you notice any sympptoms? im at 675 which is barely elevated and have cartilage pain in my joints for days if i do too much phsyical activity. also problems with reflux@@dlodato052584
I just found out mine is 600 as well.. Looking into cutting down animal protein and going to see a hematologist.. Did you try and take anything to help with Glutathione levels??
Hello, I am going through the same. Curious, were your hemoglobin and hematocrit also a little high?
thank you so much for sharing
Well explained, thank you sir🙏🏾🙏🏾
Thanks for the info!
Thank you for sharing your journey. I'm waiting on my script to start bloodletting, leaching 😉. My levels are at 1400!! I am 44 and experiencing so many horrible symptoms. It can really will mess you up. Stay healthy my friends. ❤
Just waiting to get the 100% go ahead that mine condition is Haemochromatosis…hate feeling unwell and my life feels like it’s on hold.Onwards and upwards!
if you don't mind me asking, what kind of symptoms were you experiencing with ferritin levels at 1400? Im curious because i may be going through the same thing.
Thank you so much for this video and all the comments below. I just got my blood results. In 37 and 282ng/ml of ferritin and high cholesterol, I got scared reading what it could mean and couldn’t find anything helpful online, especially how to eat. Being here, gave me an idea at least and calmed me down...
How is your health now??
Fruits vegetables and lean meats . Stay away from process foods , cheeses , and anything made by humans
following
I am so glad you shared. I suspect I have hemochromotosis, that was diagnosed as Polycythemia Vera in error. I always have a chronically low BP. Unfortunately I didn't have good follow up as a teen, even though in the past as a child I had been placed on Hydroxyurea. Untreated, I now have secondary complications heart failure fluid overload, diabetes and other matters. Thanks for sharing
@apache, do you have scd? You mentioned hydroxyurea
@@sarahsituma53 what is SCD? I was placed on hydroxyurea when I was 14 I don't recall why, just being sick from taking it?
U think it’s HH and not pv?
thanks for posting this video very informative
Are Iron overload ?
@@Skybluewindcool i never got tested but i tried to cut out food with high levels of iron and ate things and drank things with very low iron yesterday already getting better erection better blood flow i can see it on the top of my hands i think now I'm heading in the right direction
I was diagnosed 5 yrs ago at 64. Ferritin level got up to 4700. Doctors not quite sure why I lived and without organ damage. But, numerous types of other long term damage that makes my daily life hard. Long story, hope I can tell it sometime.
I feel like my diabetes, arthritis, and hypogonadism could have been prevented if they had checked my iron levels some years back when I first complained of issues.
@@Cork_UO same thing happen to me
Thanks for this video. I am in the middle of getting diagnosed.
I received notice today that I have hemochromatosis, but I’m at the early stages l will be tested to see if mine is genetic or not. Watching your story I couldn’t help but cry because I’m scared of what’s to come for me. But, listening to you made me laugh especially when you spoke of venison meat. Thank you so much. I will be following you to see how everything works out for you. 😊😇😊
Thanks it's informative
Man Japan is one of my favorite places on Earth. I also have hemochromatosis… phlebotomy, diet, cat scans of liver (and pancreas). It’s been an over ten year battle for me. American doctors tend to not take it seriously. Thanks for the video good sir.
Did nobody ever tell you to donate blood?
Thank you for sharing!
Hey Rich, I don't know if you're still here but in the month that your ferritin levels dropped by 100 points, was that purely just diet or did it include the phlebotomies? Thanks.
Awesome video. Makes me feel more comfortable. I too experienced this, healthy, exercised, and had high liver enzymes. I tested negative for hemochromatosis but I have very high ferritin levels. Around 1,250! I'm now doing phlebotomy. And am working towards recovery
instaBlaster...
what was the cause then since you were negative for hemochromatosis??
@@user-im6fy4qp6m he needs copper bit does not know, read the book CUre.
@@user-im6fy4qp6mferritin can get cranked up like that when your body is inflamed or has an infection or other issues going on
Thank you so much!
great video u sound like me my doc did the same thing and minds was 650 now i changed my lifestyle and im waiting for my blood to get drawn on sep 1 to get rid of some of this blood
Hi Rich, many thanks for your great video! You've explained more to me in 15 minutes than the 'experts' have over the past few weeks. My ferritin level is currently 375 which has dropped from 395 over a period of 3 weeks. I'm now waiting to hear what treatment I'll be having and when it's going to start. Thanks again and keep up the good work. Hopefully you'll keep us updated on your progress, so I've subscribed!
Thanks for the feedback Mistermopar! Glad to hear you caught the high ferritin relatively early and that it's already on it's way down. My ferritin is down to 15 last time I checked during summer vacation back to the states. I'm going to follow up with my doctor here in Japan, discuss what my doctor in America told me, and see what the best path for maintenance is going forward. After all is said and done I'm definitely going to make another video. Hopefully won't be too long now.
@@richgolden375 Many thanks for your reply. Like many of your 'followers', I'm looking forward to your next video. Over here in the UK getting any info can be like squeezing lemons!! My most recent blood test (last Thursday) showed my level has remained at 375. Now the hematologist wants me to wait a month and then have another blood test! In the meantime I'm modifying my diet as per your guidance and will be interested to see what my levels are in a month. Thanks again.
@@Mistermopar is 375 considered high? I have sf of 365. I also have high alt of 99. What comes first? High ferritin or high liver enzymes?
@@davet8134 Hi Dave, sorry I've only just seen this. Here in the UK there's a lot of conflicting ideas on what is considered high sf levels. My sf has fluctuated between 340 and 395, and is currently 385. My doctor has been relaying my levels to a hematologist and, so far, he feels that treatment is unnecessary! Three days ago I spoke to a guy whose sf at first diagnosis was 900. He was immediately put on weekly phlebotomy sessions, and after several months his level is 91. He is now having fortnightly sessions and aiming for a level of 50. Now he's aged 48 and I'm 74 and I don't know if age is a factor in deciding on when treatment should be given. Getting back to your questions, based on my experience, I wouldn't think that your sf of 365 is a major concern. Your alt figure of 99 does sound high to me and I strongly advise you to press your doctor for more tests/info. I hope I haven't bored you too much! Good luck with the doc and let us know how you get on.
I think I'll change my lifestyle thank you!
Thank you for sharing your story! I am going to try eating lower iron foods.
Thank you so much for this video. My brother has just been diagnosed and he is wondering what to do.
Drink lots of cabbage juice [use a blender ------ > half a cabbage + 2 cups of water] also eat lots of cabbage - coleslaw, kimchi. As excess cabbage can cause goiter [cabbage depletes iodine = goitrogenic], you'll need to add a drop or two of lugol iodine. Takes about 2-3 months for iron level to normalize. I read that lactoferrin which is found in milk, cheese, etc. can also help. The richest source of lactoferrin is colostrum. Best is to work with a doctor or medical people as low iron is just as bad. blog.valerieaurora.org/2019/04/06/iron-and-cheese-how-i-used-lactoferrin-to-treat-iron-overload-part-3/
You are a great communicator. Very thorough and effective. I really got a lot from this. Thanks.
Me too would like to Thank You for your very informative video...well done...👍🇺🇸
I'm going through this right now. That's why I'm looking at this video.
Me too. I hope you are doing better now 6 months later.
Thank you so much sir for educating me I am a mother of a 7 year old beta thalassemia trait
You may want to look into IP-6. Seen it work very effectively in lowering levels in patients with ferritin in excessive of 2000. Dosage can be quite high at around 1500mg TID.
I have also found a single high dose of 4 grams of IP6 on empty stomach has also worked well.
Hi Peter! Hope you are perfect in health! Can you please, give us more details about IP-6? Have you tried it and for how long? Any side effects? Can you suggest a special brand? Thank you!
I ordered is it working
@@cadewahl1956 how long you been taking.
Thank you!
Thanks! My ferritin is 740 I’m seeing my dr on Friday!
An underdiagnosed disease that deserves attention!! If one family member has this, several in the family and relatives also have it, so family investigations are of utmost importance. I had a serum ferritin level of 1100, now 60 as I remove 0.5 liters of blood every two months.
Thanks for the video.
Thanks for sharing
Thanks for watching Vibian, hope you found my story informative.
Sounds like you could use to brush up on practice of Standard American more often. I came across a paper that was a write-up of a case study, where a physician had induced Fe anemia in himself via six turmeric extract capsules (538 mg) daily. It's called "Iron Deficiency Anemia Due to High-dose Turmeric." It purportedly chelates with Fe. It seems a preferable alternative to weekly phlebotomies. Those were presumably high-circumin extracts. Also, Morley Robbins has a lot of stuff on the interaction of Cu, Fe & Mg.
Very nicely said
Hi Rich. I was diagnosed with MDS....low hg (5.5), and super high ferritin (over 2000). So I can't use phlebotomy to bring down the ferritin levels. Any help much appreciated