Over the past two years my health suddenly took a turn for the worse. I was diagnosed first with osteoarthritis. Then a year later type 2 diabetes. Then most recently hypogonadism. Not one of the "specialists" thought to check my iron levels. I got lucky I found my hereditary hemochromatosis by chance when I ordered a 23andMe DNA ancestry/health kit. I was shocked to find out that HH can cause all of the health issues I have and not a single doctor thought to check my iron levels. If they had checked I would have been treated earlier and possibly not ended up with diabetes and hypogonadism. I'm lucky I found it before my liver was severely damaged.
you’re one of the first educational content creators on here that speaks slow enough for me to keep up! i don’t know what it is with medics speaking at 100mph but finding your videos has been a lifesaver! thank you :)
i know Im asking the wrong place but does anybody know a method to get back into an instagram account? I was dumb lost my account password. I love any tips you can give me!
@Gianni Thiago thanks for your reply. I found the site thru google and Im trying it out atm. Seems to take a while so I will reply here later with my results.
Anyone watching this video...he is SPOT on! Excellent short video and very accurate. I had all of the symptoms mentioned and none of the routine doctors could find the issue. I finally got a referral to the right specialist and then went through all of the testing mentioned, including the biopsy. I was confirmed Hereditary Hemochromatosis about 3 years ago. We immediately started the blood removal sessions weekly, which was a little difficult. But now I am on a qtrly maintenance schedule and so much better. The earlier in life that you are diagnosed and begin treatment the longer you will live a healthy life.
Great explanation of what and how the disorder affects people of whom I just became aged 50, so now to follow your clear and concise approach to manage the problem 👍 thank you Sir
I was diagnosed about a year ago. I have basically had a blood draw once a week for the past year. Not fun but it has done the trick. I fell a lot better overall and I can tell when my numbers go up due to I get very tired and stay fatigued. Great video.
My grandma just got diagnosed, I was diagnosed with narcolepsy at a young age, now I’m thinking I might have it and not narcolepsy… have you noticed increased energy or did you ever struggle with being overly tired?
My step dad developed iron overload as he aged. For other reasons he went on a keto diet for four months, lost 40 pounds, then continued to eat healthy. His iron problem went away.
I just took a Haemachromatosis mutation blood test, and I’m so nervous for my results. Your video is simply put and straight to the point, educational. Thank you.
Thank you from a med student from the USA! Just got a UWorld practice Step 2 question on hereditary hemochromatosis arthropathy, and this video helped me to dig deeper into the whole picture of HH.
This kind of teaching should be used at the University. In this way you can improve the attention of all students! I’m a new subscriber from Italy. I would have found you before...I graduated some months ago :)
Simply brilliant! My friend has this condition. He was adopted, so he has no genetic info. I am the opposite. I have low iron. I am anemic. I have iron infusions and blood transfusions. The liver is an amazing organ. The largest, with so many functions. Thanks!
I've just been diagnosed as having haemochromatosis. It was by chance,my GP did a hba1c blood sugar test and iron test. My iron levels are 47% up,to what they should be. I am extremely tired all of the time..
Nice clear presentation but a MAJOR symptom not mentioned: painful arthritic fingers! This along with constant tiredness are the worst (most obvious) early symptoms that every physician should know about. Sent from a C282Y homozygous person who was "diagnosed" with glandular fever 5 or 6 times during my life - but no remnant antibodies. It was HH, and the sore fingers from an early age (20s) should have been a clue. Diagnosed in late 50s, now in my 60s, loss of function in my hands is becoming an issue.
I know this is an old comment but mine started the exact same way. Painful fingers and fatigue decades before I diagnosed myself at 50 with a DNA test. I study classical guitar and piano. They actually told me my painful fingers were from overuse playing music that caused osteoarthritis. So many doctors are idiots.
Easy to call them idiots when your not the one in the area dealing with complex patients and an infinite numbers of pathologies, investigations, and typical/atypical manifestations of a multitude of dieases. Common things are common and rare things are rare. Ive seen plenty of patients with OA due to overuse. How many haemocromatosis patients have a see? a handful. I cant be testing every single person for HCT in a limited resource strained health service.. @@Cork_UO
Just recently got diagnosed with hemochromatosis, the first doctor i saw found high iron and high ferritin (around 510 ug/l) and decided to test my liver function, once he found there was no damage he decided to drop it and basically said it was nothing to worry about and told me to wait 12 months before doing another test and didn't even bother to do gene testing. I got a second opinion from a new very kind doctor and she actually did the gene testing which confirmed it was hemochromatosis and not only that within 4-5 months of seeing that last doctor my ferratin was at 1115 ug/l and my iron was also raised, im going to start treatment soon but i cant imagine what damage could've been caused if i had listened to the first doctor, not only was he an idiot but he was incredibly dismissive of all my questions and concerns. When in doubt ALWAYS get a second opinion
i was walking around with all kind of weird things for 5 years until they found out,they took 4x 500ml blood in a month time, after that it wasnt enough and now i have to go another 6 times,i dont hate it but i am scared every time i think i am going to faint. i have a poor diet and underweight cause i have also mental problems for years.i dont wish for money i wish for better health, btw my liver was also affectedd by it.
Thanks for this. I know I have had high iron content, as a child, when my mother thought it would be good to give me multi vitamins containing Iron. I didn't poo for a week so mum took me to the doctor and the GP went mad at my mother, informing her I was not to have any Iron at all in any foods wherever possible. In my sixties, I now have Non-Alcohol Fatty Liver disease which my new doctor is taking seriously, and hope to start venesection therapy.
I have just been diagnosed with Hereditary Hemochromatosis at the age of 44 and found this video very useful to help me understand what it is and how it affects me. I am now on the look out, to get involved in any research projects on Hereditary Hemochromatosis, if you or any of your followers know of any in the UK please let me know. Or do a video, many thanks.
Martin Brecknock I just went to donate blood and they checked my iron levels and they came back at 19.4 the lady told me if they were 20 or above they would not have taken the donation. I’m not sure but is 19.4 a dangerous level?
I Don't think so, when I applied to give blood they said come back when your levels are bellow 200. They are currently at 1664, I live in the UK and not sure where you are from. But from the 200 I was told and the 20 you were told. I assume yours are 190.4, if in any doubt see your Doctor.
I hope I have it it will explanation alot iron levels over 1200 but the last 7days going yellow pee outa my bum 10 times a day and crams in my tummy does this happen if u have it still waiting on my blood results
Guys a small advice. I have been diagnosed with celiac disease, subclinical hypothyroidism which is always triggered when my autoimmune gastritis gets activated, , gerd, gastroparesis, previous history of metabolic syndrome, dislypidemia, pernicious anemia with Vitamin B12 deficiency with neurodegenerative disorders, mast cell activation. I always had my ferritin on the 400/500 values even when I eating freely. Now the issue is that my saturation jumped from 12% to 58%, with total free iron of 180. ( I do follow a strict carnivore diet due to my non responsive celiac disease diagnosis). My test for polycytemia and hemochromatosis will arrive next week. What am I suppose to eat with all of these conditions?
I'm female and had symptoms at age 27, diagnosed at age 33. Finaly at 67, reduced red meat and taking zink and copper. Now my Iron is finally low. Zink, copper and iron, level each other out. so if your low in zink or copper, your iron can go higher, If you take copper and zink your Iron will go down. I am NOT a doctor, just having to deal with this myself and sharing what has worked for me..
I eat a carnivore diet with no carbs and all meats. I only need a phlebotomy once a year to keep my iron down. Everyone loads iron differently with this disease.
@@Cork_UO Yes, because even as a menstruating female at 30, I had to donate 6 times a year. Now that my cooper and zinc are up, It's been over a year.
My husband went to a blood donation bus and they took sample to see if he is a good candidate to donate. The results came back with 977 Iron level so wish us luck, he has a doctor appointment in 10 days.
My father has hemochromatosis. His father died in his 60's of a heart attack. My father treats the disease with monthly blood withdraws. I remember back when when he was tested, they performed an awake, no anesthesia or pain killer involved biopsy. He apparently went through quite a bit of pain during the biopsy. The thought of that honestly scares the living f*ck out of me. I have tried testing for the disease but I am only 27 and it's hard to know yet. My triglycerides are wacky but everything else seems normal. If anyone has any information regarding gene testing, that wouldn't cost me an arm and a leg, then please let me know.
Biopsy is no longer needed. I'm pretty sure if you do a 23 and Me test it will tell you if you have HH. These tests are often on sale during the holidays (think 60 bucks), so I would look it up and keep your eye out. If you do have HH I would go get bloodwork done so you know your levels/how much treatment would be necessary. I was lucky to still be on my parent's insurance (diagnosed at 15 years old) because my mom had recently been diagnosed and wanted me to know early so I wouldn't suffer the symptoms as she had for years. Also, I know many blood donation centers don't technically take HH blood but a lot of us go anyways and keep quiet about it. According to my hematologist, it's a "don't ask, don't tell" situation - every doc I've seen said it's fine to donate. The iron-rich blood is good for people in need of transfusion and it's free rather than you paying a doc to take it and throw it away.
Now they can do an MRI to look for iron deposits without doing a biopsy. Liver biopsy is only used these days if they believe you have advanced liver disease and they need to look at the liver tissue to stage it.
Just an FYI the 23andMe ancestry and health kits are on sale at 50% right now for $99. If you don't have medical insurance that's a good option to see if you have hereditary hemochromatosis.
Is it not possible to have your DNA tested? It’s quite straightforward and correct. I am 62 now and lately I had several complaints, at a certain point I even thought I had a brain tumor ... anyway, at a certain moment a blood test revealed high ferritin level. Because of the COVID problems in hospital the specialist decided that the DNA test was the best option because it can even determine which ‘variant’ of hemochromatosis you have... so you should take that DNA analysis I think. All the best.
My iron levels have been high all my life (even whilst becoming vegan) now have developed an enlarged liver .. no one has even suggested testing me for this 🙏🏻👱🏻♀️
SF varies by gender and age, and alcohol consumption.. but a broad number for SF is 50-150. I have HH and my value at (SELF!!!) diagnosis was 2350. As he said it's an unreliable measure of iron stores, and yes (sigh)you have to exclude inflammation (aka "acute phase reaction") but at high levels is certainly a diagnosis if it's consistently high. I had the gene test and yes I have both copies of the 282Y defect (the most common). The accurate way to determine how MUCH excess iron you actually had can only be done by measuring the volume/weight of the blood removed over a long period until an acceptable ferritin level is reached (usually 50). Furthermore, the sudden removal of blood over this period will not completely de-iron you even if you never ate a microgram of iron the rest of your life. There is a period of time after initial de-ironing where iron continues to leach out of every cell it was in in excess amounts. Lastly, iron NEVER leaves joints so even long after de-ironing with perfectly good joints you can get joint damage (which is what I got in the fingers). I did get cirrhosis and type 1 diabetes from iron overload (my initial presentation was a coma secondary to DKA secondary to iron overload undiagnosed and untreated). Damn near killed me.... My knees and hips and so on seem to be doing well as I'm almost 59 and run 2 1/2 miles daily with no real problems. Hallelujah!
Thank you for this! Thank you for speaking slowly lol seriously. My son has been diagnosed, we're looking for more info on it in kids, anyone have any leads please? Other parents with kids with HH?
Your levels are over twice the normal range. Your doctor is either a moron or is negligent to say your levels must be over 1000 to care. I would find a different and competent doctor and report him to the medical board for negligence.
Thank you for creating this; very informative. My recent blood work came back with several initial indications that I might have hemochromatosis (I know, I spell it wrong - lol). I'll soon be doing additional testing to determine whether or not I have hemochromatosis.
@@dempseywilson787 - Yes, I have genetic hemochromatosis. Blood work indicated I have anemia. Additional blood work indicated I had high Serum Ferritin levels and that it is a genetic issue.
@@Joe_At_Empire_Marketing_Group good luck. I am 16 and present no physical symptoms and am seemingly healthy however my blood work shows i have high serum iron at 40, high transferrin saturation at 59 and seemingly normal ferritin at 93 and as i do have convinced myself that i have this too, scary stuff.
@@dempseywilson787 My research indicates that significant health problems occur IF the liver is damaged before diagnosis and treatment. If your liver, heart, and pancreas (the three areas of the body where iron accumulates) are healthy, the outcome should be an average life expectancy. NOTICE: I am not a physician, and this information should not be construed as a medical diagnosis.
@@Joe_At_Empire_Marketing_Group i really appreciate your reply as i was wondering the exact thing you said. So for clarification, if i get treatment for excess iron before symptoms arise am i basically living a perfectly normal and healthy life and the only changes i need to make is to watch my iron intake? Basically if no damage is done and treatment is early enough is hemochromatosis just the state of extra iron absorption and as long as i keep my iron levels normal i should be fine?
Hi! I was wondering if hemochromatosis could be detected in adolescents? I’m a 15-year-old girl, and I took a DNA test that said that I have both of the tested variants for hereditary-related hemochromatosis. I’d rather know earlier rather than later if I actually have the disorder, so I was wondering if anything would show up in my blood work at this early of an age. Thank you and have a great day!
Not a doctor, but rather someone who wishes he had known about the generic markers for HH before so much damage had been done. I know this is a late response, but I hope you see it. The iron in those with HH builds up over time, so you're unlikely to see anything in bloodwork at this time. But there are some things you can do. Insist that your doctor do a ferritin test at least once a year, so you can keep track of whether it's building up. It often doesn't show up in women until a later age because of mensuration, but you can still give blood every once in awhile. And take supplements that either don't contain iron, or that help prevent its absorption (like turmeric). My iron is under control (with treatment) now, but damage has already been done to many of my organs, including heart and pancreas. Good luck!
If you know you have these genes, you can take steps to make sure you are not eating an iron rich diet. You don’t ever need to develop problems from taking in too much iron. Your iron levels should be regularly monitored. Many doctors seem to have forgotten what hemochromatosis is, so you’ll need to be aggressive in asking for the tests. They’re not expensive tests.
I guess its not the fe deposition directly in gonads that leads to gonadal atrophy.. gonadal atrophy is due to the fact that fe deposits in pituitary gland leading to decrease release of gnRh n hence leae testicular atrophy,gynecomastia in males n amenorrhea in females..plz rectify it bcz this question has been asked many times
I'm have syncope, dark orange/red urine, fatigue, heart palpitations, rapid itchy scalp hairloss. Blood work normal, heart normal other than paliptation .?? Please help me..
That is an interesting question. I don't know the answer but suspect it will be highly individual. If this applies to you I suggest getting advice from your doctor who could monitor your blood levels etc.
@@ZeroToFinals My brother has one copy and overloads.. I see a LOT more of heterzygotes overloading than I was originally led to believe.. but I got zapped. Real real good as they say: www.washingtonpost.com/national/medical-mystery-alcoholism-didnt-cause-mans-diabetes-and-cirrhosis/2011/05/19/AGd0hdTH_story.html
@@pamsmith1591 ironically nothing at all wrong with the blood. The red cross did for awhile let it be used, as a pilot program. Then they stopped it. Here's their logic (very difficult to swallow). Even tho you're donating blood for FREE, because you are donating and it would have cost you to donate otherwise, it is of financial benefit to you therefore you can not donate. AAAAAUUUUGGGHHHH!!!!!!
@@silasmarner7586 Funny, my hematologist recommended for me (and apparently all his HH patients) to go to the RC or any donation center regardless - just don't mention you have it. I've never been asked by RC employees either, I've been told it's a "don't ask, don't tell" situation, and more common than one would think. The iron-rich blood is good for people receiving transfusions as they are often anemic, and it's free rather than the patient paying to have their blood taken and thrown out (such a waste!). Of course, it's totally up to the individual because I know some are uncomfortable with the deceit, however I for one don't mind in this case, since it helps others in the end!
I’m also 22, I was diagnosed with narcolepsy we just found out my grandma has this, now I’m starting to think I might as well and it might not be narcolepsy. I was on birth control in hs and my symptoms were much worse then
Girls, don't listen to doctors! You are young, I am 40 and just looking into it. Get off the birth control, change your diet, check your iron levels regularly if you can.
They caught my iron when it was 40, but my ferritin was 2100. (norm is 15-560, but a 32M should be around 300) They got my ferritin down to 100 about 6 weeks ago. 2 weeks ago they measured again and it hadn't moved. So they think I'm relatively stable now and only need to be drained once every 2-3 months.
@@AtotehZ wow.. yeah mine got up to 700 then immediately started phlebotomy and now down by half that.. giving blood is hard because I can only to 250 at a time and only every few weeks
So when you have been diagnosed with Hemachromatosis. And been to every specialist, and told everything looks good. But still have terrible joint pain and heart issues. What to do next???????
i have haemochromatosis but its not due to hfe mutation. i got me and my family tested they are negative. i am from india .the question is how it is possible in countries of south asia.
I was diagnosed with Haemochromatosis In February 2020. I had been to many different Doctors over the years.. My Symtoms were Cronic fatigue, Foggy Brain, Low energy, heat sensitivity, I believe I have had this since I was a kid. I was always tired even if I had an easy day. Much worse if the sun was out and it was 75 or above. Had to pull over on the side of the highways and sleep for 2 hours even after I had slept for 10 to 12 hours. ( My question is when you get your Iron levels back down will you have higher energy and be able to function again fully? ) I give blood every 2 weeks for this problem. I'm wondering if i can give more since my ferritin levels were 800mg. My Dr. wanted to just send me to someone else once he found out I had this.. would of been nice if he would of drawn blood from me for a while before he shoved me off to another Dr. that I had to wait 3 to 4 months to see and wouldn't take my health insurance at the time.
Please research HIJAMA. Find a certified Hijama practitioner and try this. So beneficial for many issues including this. And little to no side affects. Hijama Nation Academy has a registry of practioners.
I have been diagnosed with haemochromatosis. I'm doing a venesection every two weeks, the haematologist wants me to do it until my ferritin level drops to 100 and then he told me that I can do a venesection twice or three times a year. I have already done 4 venesections so far and I feel a bit less tired, I'm still having brain fog though. How do you feel now?
Which does nothing to switch off your iron uptake system which works 24/7 no matter how much you bleed. If you think bleeding cures any genetic defect you are delusional. Don't believe the ''phlebotomy'' bullshit. Nothing can save us. They can drain a river of blood but your iron uptake system goes on sucking up the 7 pints they leave behind. Don't be fooled. You need a drug called deferoximine. Look it up.
@@marknovak8471 I have never read anyone making the case that phlebotomy cures it, rather taking the load of the internal organs. Huge different. The pharmaceutical alternatives has way more side effects than just draining some blood.
@@carlsiren How does it take any load off the organs? It removes none of the accrued iron already there and the loss of blood doesn't determine the rate at which one's body sucks up and distributes iron to the organs. At no stage does bleeding address the actual disease. It barely addresses ONE symptom. Iron in your blood is not the disease. It won't stop your joints aching and it won't stop your heart failing.
@@marknovak8471 You are wrong. The condition in itself is not harmful, however the effect of the condition is - the iron overload. If you mitigate the overload with phlebotomy you also mitigate the side effects of having systemicly high iron levels. Given that the overload is found in time, average life expectancy is normal for a person with hemochromatosis.
It can be either. I was initially presented with a coma from Diabetic Ketoacidosis and clearly was type 1 as the excess iron killed off my islet cells in my pancreas. A heckuva way to start the whole shebang!
@@zozansinde9610 DNA testing is best, according to some of the comments above. A simple way is to google up the symptoms of excessive iron and you can intuit from that. In fact this video here already lists a number of the common symptoms so just go over them. Finger joint pain, liver spots and general ageing signs are all suspect.
This video is not truthful. I'm 36 female .I have 2 copies of mutated genes on chromosome 6.There's not enough research into this illness & these videos are not factual, it's guesswork at best.
10 years ago I presented this problem my Dr talked-about eating Lee's meat and cutoff Iron Intake which I did and the Iron levels never went down and tru DNA testing a was dicnosed whit hereditary Himocromatosis .. the funny part is I am a female from Colombia 🤷♀️🤷♀️🤷♀️🤷♀️ and this illness happens only to Caucasians or European Males over the 50s... My gray gray parents are from Spain that maybe explains why.. - I still have my periods 1 year later the Joint pain was bad now I have Rumatoid arthritis the Iron levels and ferritn R Normal thank goodness.. I did had flabotomys 1 pint per month for 2 year"s Sice then I am under control obviously watching what I eat and seeing the oncologist every year.. my Surprise a lot of Dr Don't know a bout this..
Male from Brazil with Italian/German ancestry. Never thought this diseases would be a reality for me.. Currently under treatment, let's see how it goes
![เปิดใจ พี่ญา คนรุม หลังทัวร์ลง หนักสุดในชีวิต!! l [Nickynachat]](http://i.ytimg.com/vi/2-OJZRtclro/mqdefault.jpg)
Over the past two years my health suddenly took a turn for the worse. I was diagnosed first with osteoarthritis. Then a year later type 2 diabetes. Then most recently hypogonadism. Not one of the "specialists" thought to check my iron levels. I got lucky I found my hereditary hemochromatosis by chance when I ordered a 23andMe DNA ancestry/health kit. I was shocked to find out that HH can cause all of the health issues I have and not a single doctor thought to check my iron levels. If they had checked I would have been treated earlier and possibly not ended up with diabetes and hypogonadism. I'm lucky I found it before my liver was severely damaged.
did you have both alleles? (homozygous)
... and also which gene. thankfully, you found it yourself!
@@adrena7321 Homozygous C282Y. One from each parent unfortunately.
I’m sorry for your diagnosis....
Can you describe your osteoarthritis? Where is located?
@@alexsalerno6018 Knees, fingers, spine, and shoulders.
you’re one of the first educational content creators on here that speaks slow enough for me to keep up! i don’t know what it is with medics speaking at 100mph but finding your videos has been a lifesaver! thank you :)
i know Im asking the wrong place but does anybody know a method to get back into an instagram account?
I was dumb lost my account password. I love any tips you can give me!
@Andrew Zeke Instablaster =)
@Gianni Thiago thanks for your reply. I found the site thru google and Im trying it out atm.
Seems to take a while so I will reply here later with my results.
@Gianni Thiago It worked and I now got access to my account again. Im so happy:D
Thanks so much you saved my account!
@Andrew Zeke No problem =)
Anyone watching this video...he is SPOT on! Excellent short video and very accurate. I had all of the symptoms mentioned and none of the routine doctors could find the issue. I finally got a referral to the right specialist and then went through all of the testing mentioned, including the biopsy. I was confirmed Hereditary Hemochromatosis about 3 years ago. We immediately started the blood removal sessions weekly, which was a little difficult. But now I am on a qtrly maintenance schedule and so much better. The earlier in life that you are diagnosed and begin treatment the longer you will live a healthy life.
Where is treatment
Tom...I wish I could nominate you for an MBE for all this work and effort!! You have honestly made a massive difference to my studies, thank you!
Thanks Michael! So cool to hear! I feel like its just getting started and it is so exciting to get such positive feedback
Great explanation of what and how the disorder affects people of whom I just became aged 50, so now to follow your clear and concise approach to manage the problem 👍 thank you Sir
I was diagnosed about a year ago. I have basically had a blood draw once a week for the past year. Not fun but it has done the trick. I fell a lot better overall and I can tell when my numbers go up due to I get very tired and stay fatigued.
Great video.
My grandma just got diagnosed, I was diagnosed with narcolepsy at a young age, now I’m thinking I might have it and not narcolepsy… have you noticed increased energy or did you ever struggle with being overly tired?
@@katelynngraham2738
I was extremely tired but now I feel great!
I'm waiting on the gene test to come back (as is my brother). How long does the blood draw take?
@katiepetsy
It took about a week or so.
My step dad developed iron overload as he aged. For other reasons he went on a keto diet for four months, lost 40 pounds, then continued to eat healthy. His iron problem went away.
That’s because keto means less enriched foods we don’t needy added vitamins
Best, most complete summary I've ever seen in the 20+ years since my diagnosis
I just took a Haemachromatosis mutation blood test, and I’m so nervous for my results. Your video is simply put and straight to the point, educational. Thank you.
Thank you from a med student from the USA! Just got a UWorld practice Step 2 question on hereditary hemochromatosis arthropathy, and this video helped me to dig deeper into the whole picture of HH.
I'm a med student from the University of Cape Town, SA. thank you for this
Awesome! Good luck in your studies
This kind of teaching should be used at the University. In this way you can improve the attention of all students!
I’m a new subscriber from Italy. I would have found you before...I graduated some months ago :)
Thanks for subscribing! So glad you liked it
Transferrin Saturation: Serum Iron / TIBC
Very nicely done. Very clear and informative. Keep it up!
Thanks!
Simply brilliant! My friend has this condition. He was adopted, so he has no genetic info.
I am the opposite. I have low iron. I am anemic. I have iron infusions and blood transfusions. The liver is an amazing organ. The largest, with so many functions. Thanks!
I've just been diagnosed as having haemochromatosis.
It was by chance,my GP did a hba1c blood sugar test and iron test.
My iron levels are 47% up,to what they should be.
I am extremely tired all of the time..
Did anything end up happening to bring it back down?
Just found out I need to be tested. This is BRILLIANT!! Finally I understand in plain English what this condition is😊
All GP's need to be educated on this condition!!!
And nutrition and...the list goes on and on. Western medicine is not health care seems to only be drug dealers.
Plasma Ferritin: 318 and Transferrin saturation: 0,45. Early stage of Haemochromatosis?
Also have TPO-ak, suggesting Hashimotos.
See your doctor :-) Maybe get a genetic test for HFE genes
Overall screening without genetic testing is based on transferring saturation. I think you're ok, but keep looking...
Nice clear presentation but a MAJOR symptom not mentioned: painful arthritic fingers! This along with constant tiredness are the worst (most obvious) early symptoms that every physician should know about. Sent from a C282Y homozygous person who was "diagnosed" with glandular fever 5 or 6 times during my life - but no remnant antibodies. It was HH, and the sore fingers from an early age (20s) should have been a clue. Diagnosed in late 50s, now in my 60s, loss of function in my hands is becoming an issue.
I know this is an old comment but mine started the exact same way. Painful fingers and fatigue decades before I diagnosed myself at 50 with a DNA test. I study classical guitar and piano. They actually told me my painful fingers were from overuse playing music that caused osteoarthritis. So many doctors are idiots.
Easy to call them idiots when your not the one in the area dealing with complex patients and an infinite numbers of pathologies, investigations, and typical/atypical manifestations of a multitude of dieases. Common things are common and rare things are rare. Ive seen plenty of patients with OA due to overuse. How many haemocromatosis patients have a see? a handful. I cant be testing every single person for HCT in a limited resource strained health service.. @@Cork_UO
I wish all GPs were up-to-date with this information about Haemochromatosis.
Thats the best description Ive seen. Thank you. Recently diagnosed with C282Y Hereditary Hemochromatosis
Thanks so much for this informative video; you nailed it. Helps a lot with new diagnosis.
Thank you
Thank you for making it so clear.
Off to get some leaches. I'm very hopeful
Just recently got diagnosed with hemochromatosis, the first doctor i saw found high iron and high ferritin (around 510 ug/l) and decided to test my liver function, once he found there was no damage he decided to drop it and basically said it was nothing to worry about and told me to wait 12 months before doing another test and didn't even bother to do gene testing. I got a second opinion from a new very kind doctor and she actually did the gene testing which confirmed it was hemochromatosis and not only that within 4-5 months of seeing that last doctor my ferratin was at 1115 ug/l and my iron was also raised, im going to start treatment soon but i cant imagine what damage could've been caused if i had listened to the first doctor, not only was he an idiot but he was incredibly dismissive of all my questions and concerns. When in doubt ALWAYS get a second opinion
i was walking around with all kind of weird things for 5 years until they found out,they took 4x 500ml blood in a month time, after that it wasnt enough and now i have to go another 6 times,i dont hate it but i am scared every time i think i am going to faint. i have a poor diet and underweight cause i have also mental problems for years.i dont wish for money i wish for better health, btw my liver was also affectedd by it.
Thanks for this. I know I have had high iron content, as a child, when my mother thought it would be good to give me multi vitamins containing Iron. I didn't poo for a week so mum took me to the doctor and the GP went mad at my mother, informing her I was not to have any Iron at all in any foods wherever possible. In my sixties, I now have Non-Alcohol Fatty Liver disease which my new doctor is taking seriously, and hope to start venesection therapy.
I love the Playback Speed option in videos like these
Very helpful simple and clear explanation I love it. Thank you.
I have just been diagnosed with Hereditary Hemochromatosis at the age of 44 and found this video very useful to help me understand what it is and how it affects me. I am now on the look out, to get involved in any research projects on Hereditary Hemochromatosis, if you or any of your followers know of any in the UK please let me know. Or do a video, many thanks.
Martin Brecknock I just went to donate blood and they checked my iron levels and they came back at 19.4 the lady told me if they were 20 or above they would not have taken the donation. I’m not sure but is 19.4 a dangerous level?
I Don't think so, when I applied to give blood they said come back when your levels are bellow 200. They are currently at 1664, I live in the UK and not sure where you are from. But from the 200 I was told and the 20 you were told. I assume yours are 190.4, if in any doubt see your Doctor.
Read my story: www.washingtonpost.com/national/medical-mystery-alcoholism-didnt-cause-mans-diabetes-and-cirrhosis/2011/05/19/AGd0hdTH_story.html
that was a fairly good intro before i start my lecture, thanks
Thank you, I have the condition, your explanation has been the clearest.
I hope I have it it will explanation alot iron levels over 1200 but the last 7days going yellow pee outa my bum 10 times a day and crams in my tummy does this happen if u have it still waiting on my blood results
Guys a small advice.
I have been diagnosed with celiac disease, subclinical hypothyroidism which is always triggered when my autoimmune gastritis gets activated, , gerd, gastroparesis, previous history of metabolic syndrome, dislypidemia, pernicious anemia with Vitamin B12 deficiency with neurodegenerative disorders, mast cell activation.
I always had my ferritin on the 400/500 values even when I eating freely.
Now the issue is that my saturation jumped from 12% to 58%, with total free iron of 180. ( I do follow a strict carnivore diet due to my non responsive celiac disease diagnosis).
My test for polycytemia and hemochromatosis will arrive next week.
What am I suppose to eat with all of these conditions?
I'm female and had symptoms at age 27, diagnosed at age 33. Finaly at 67, reduced red meat and taking zink and copper. Now my Iron is finally low. Zink, copper and iron, level each other out. so if your low in zink or copper, your iron can go higher, If you take copper and zink your Iron will go down. I am NOT a doctor, just having to deal with this myself and sharing what has worked for me..
I eat a carnivore diet with no carbs and all meats. I only need a phlebotomy once a year to keep my iron down. Everyone loads iron differently with this disease.
@@Cork_UO Yes, because even as a menstruating female at 30, I had to donate 6 times a year. Now that my cooper and zinc are up, It's been over a year.
What are your levels now? And what were they before? Did you make any other dietary changes?
My husband went to a blood donation bus and they took sample to see if he is a good candidate to donate. The results came back with 977 Iron level so wish us luck, he has a doctor appointment in 10 days.
How is he doing?
My father has hemochromatosis. His father died in his 60's of a heart attack. My father treats the disease with monthly blood withdraws. I remember back when when he was tested, they performed an awake, no anesthesia or pain killer involved biopsy. He apparently went through quite a bit of pain during the biopsy. The thought of that honestly scares the living f*ck out of me. I have tried testing for the disease but I am only 27 and it's hard to know yet. My triglycerides are wacky but everything else seems normal. If anyone has any information regarding gene testing, that wouldn't cost me an arm and a leg, then please let me know.
Biopsy is no longer needed. I'm pretty sure if you do a 23 and Me test it will tell you if you have HH. These tests are often on sale during the holidays (think 60 bucks), so I would look it up and keep your eye out. If you do have HH I would go get bloodwork done so you know your levels/how much treatment would be necessary. I was lucky to still be on my parent's insurance (diagnosed at 15 years old) because my mom had recently been diagnosed and wanted me to know early so I wouldn't suffer the symptoms as she had for years. Also, I know many blood donation centers don't technically take HH blood but a lot of us go anyways and keep quiet about it. According to my hematologist, it's a "don't ask, don't tell" situation - every doc I've seen said it's fine to donate. The iron-rich blood is good for people in need of transfusion and it's free rather than you paying a doc to take it and throw it away.
Now they can do an MRI to look for iron deposits without doing a biopsy. Liver biopsy is only used these days if they believe you have advanced liver disease and they need to look at the liver tissue to stage it.
Just an FYI the 23andMe ancestry and health kits are on sale at 50% right now for $99. If you don't have medical insurance that's a good option to see if you have hereditary hemochromatosis.
Is it not possible to have your DNA tested? It’s quite straightforward and correct. I am 62 now and lately I had several complaints, at a certain point I even thought I had a brain tumor ... anyway, at a certain moment a blood test revealed high ferritin level. Because of the COVID problems in hospital the specialist decided that the DNA test was the best option because it can even determine which ‘variant’ of hemochromatosis you have... so you should take that DNA analysis I think. All the best.
I had a liver biopsy it was not horrible ..
Fyi
Wild. My cardiologist thinks I may have this; tested for it today. My version, if confirmed, presented as Dilated Cardiomyopathy.
My iron levels have been high all my life (even whilst becoming vegan) now have developed an enlarged liver .. no one has even suggested testing me for this 🙏🏻👱🏻♀️
I'd get it checked. Without proper treatment it'll eventually lead to organ failure...
Please research hijama and find a hijama Practioner.
@@essicaj2447 Are enlarged liver and fatty liver are same thing ?
subscribed just watching one video !!! good job
thanks!
I hope you get the attention you deserve. Much appreciated 🌹
Thanks!
You didn't mention what the numbers should be on the test. My research say 1,000 is way to high. it should be more around 100.
SF varies by gender and age, and alcohol consumption.. but a broad number for SF is 50-150. I have HH and my value at (SELF!!!) diagnosis was 2350. As he said it's an unreliable measure of iron stores, and yes (sigh)you have to exclude inflammation (aka "acute phase reaction") but at high levels is certainly a diagnosis if it's consistently high. I had the gene test and yes I have both copies of the 282Y defect (the most common). The accurate way to determine how MUCH excess iron you actually had can only be done by measuring the volume/weight of the blood removed over a long period until an acceptable ferritin level is reached (usually 50). Furthermore, the sudden removal of blood over this period will not completely de-iron you even if you never ate a microgram of iron the rest of your life. There is a period of time after initial de-ironing where iron continues to leach out of every cell it was in in excess amounts. Lastly, iron NEVER leaves joints so even long after de-ironing with perfectly good joints you can get joint damage (which is what I got in the fingers). I did get cirrhosis and type 1 diabetes from iron overload (my initial presentation was a coma secondary to DKA secondary to iron overload undiagnosed and untreated). Damn near killed me.... My knees and hips and so on seem to be doing well as I'm almost 59 and run 2 1/2 miles daily with no real problems. Hallelujah!
Thank you! Best video on this topic on YT!
Thank you for this! Thank you for speaking slowly lol seriously. My son has been diagnosed, we're looking for more info on it in kids, anyone have any leads please? Other parents with kids with HH?
Very good video for someone waiting for confirmation by genetic test. 😬
Wow these videos are amazing thanks so much for making them!
No problem. Glad you like them Alice!
My ferritin level was 754, my doctor said he wasn't concerned until it gets above 1000. Should I be concern?
no just do some bloodwork i the future to check it stays the same or less
Yes
Your levels are over twice the normal range. Your doctor is either a moron or is negligent to say your levels must be over 1000 to care. I would find a different and competent doctor and report him to the medical board for negligence.
Thank you for creating this; very informative. My recent blood work came back with several initial indications that I might have hemochromatosis (I know, I spell it wrong - lol). I'll soon be doing additional testing to determine whether or not I have hemochromatosis.
Do you have it and what were the signs you had?
@@dempseywilson787 - Yes, I have genetic hemochromatosis. Blood work indicated I have anemia. Additional blood work indicated I had high Serum Ferritin levels and that it is a genetic issue.
@@Joe_At_Empire_Marketing_Group good luck. I am 16 and present no physical symptoms and am seemingly healthy however my blood work shows i have high serum iron at 40, high transferrin saturation at 59 and seemingly normal ferritin at 93 and as i do have convinced myself that i have this too, scary stuff.
@@dempseywilson787 My research indicates that significant health problems occur IF the liver is damaged before diagnosis and treatment. If your liver, heart, and pancreas (the three areas of the body where iron accumulates) are healthy, the outcome should be an average life expectancy. NOTICE: I am not a physician, and this information should not be construed as a medical diagnosis.
@@Joe_At_Empire_Marketing_Group i really appreciate your reply as i was wondering the exact thing you said. So for clarification, if i get treatment for excess iron before symptoms arise am i basically living a perfectly normal and healthy life and the only changes i need to make is to watch my iron intake? Basically if no damage is done and treatment is early enough is hemochromatosis just the state of extra iron absorption and as long as i keep my iron levels normal i should be fine?
Thank you very much for this video
Clearly explained🙏🏾🙏🏾
This man just diagnosed what my West London doctors have failed to admit and treat for 12 flippin years. The shame.
Thanks
Excellent
Big thanks such a helpful vid
Hi! I was wondering if hemochromatosis could be detected in adolescents? I’m a 15-year-old girl, and I took a DNA test that said that I have both of the tested variants for hereditary-related hemochromatosis. I’d rather know earlier rather than later if I actually have the disorder, so I was wondering if anything would show up in my blood work at this early of an age. Thank you and have a great day!
Not a doctor, but rather someone who wishes he had known about the generic markers for HH before so much damage had been done. I know this is a late response, but I hope you see it. The iron in those with HH builds up over time, so you're unlikely to see anything in bloodwork at this time. But there are some things you can do. Insist that your doctor do a ferritin test at least once a year, so you can keep track of whether it's building up. It often doesn't show up in women until a later age because of mensuration, but you can still give blood every once in awhile. And take supplements that either don't contain iron, or that help prevent its absorption (like turmeric). My iron is under control (with treatment) now, but damage has already been done to many of my organs, including heart and pancreas. Good luck!
If you know you have these genes, you can take steps to make sure you are not eating an iron rich diet. You don’t ever need to develop problems from taking in too much iron. Your iron levels should be regularly monitored. Many doctors seem to have forgotten what hemochromatosis is, so you’ll need to be aggressive in asking for the tests. They’re not expensive tests.
@@shawnadamson9442 Thank you!
@@sw6118 Will do!
You are great 👏keep going 🥳❣️
super helpful review thank you!
What kind of doctor should I see regarding elevated Ferritin. I have many symptoms.
great repeating of textbook... thumbs up here skipper.
Thank you very much, ZTF.
You're very welcome
Isnt Tibc is low in hemochromatosis?
Great summary, thanks
I guess its not the fe deposition directly in gonads that leads to gonadal atrophy.. gonadal atrophy is due to the fact that fe deposits in pituitary gland leading to decrease release of gnRh n hence leae testicular atrophy,gynecomastia in males n amenorrhea in females..plz rectify it bcz this question has been asked many times
Nicely done.
Thanks Winnice
Thank you!!!! Keep going⭐️⭐️⭐️⭐️⭐️👏🏻
I'm have syncope, dark orange/red urine, fatigue, heart palpitations, rapid itchy scalp hairloss. Blood work normal, heart normal other than paliptation .?? Please help me..
see a doctor - and look up porphyria?? I'm not a doctor...
:/ try asking in FB groups if no doctor is helping
could be diabetes, sugar issues too
If one was to give blood every three months would this be enough to lower a patient with the geno C287Y Hetrozuguos ?
That is an interesting question. I don't know the answer but suspect it will be highly individual. If this applies to you I suggest getting advice from your doctor who could monitor your blood levels etc.
In the United Stated if you are diagnosed then you CANNOT donate blood. Unfortunately the US has not approved the use of our blood.
@@ZeroToFinals My brother has one copy and overloads.. I see a LOT more of heterzygotes overloading than I was originally led to believe.. but I got zapped. Real real good as they say: www.washingtonpost.com/national/medical-mystery-alcoholism-didnt-cause-mans-diabetes-and-cirrhosis/2011/05/19/AGd0hdTH_story.html
@@pamsmith1591 ironically nothing at all wrong with the blood. The red cross did for awhile let it be used, as a pilot program. Then they stopped it. Here's their logic (very difficult to swallow). Even tho you're donating blood for FREE, because you are donating and it would have cost you to donate otherwise, it is of financial benefit to you therefore you can not donate. AAAAAUUUUGGGHHHH!!!!!!
@@silasmarner7586 Funny, my hematologist recommended for me (and apparently all his HH patients) to go to the RC or any donation center regardless - just don't mention you have it. I've never been asked by RC employees either, I've been told it's a "don't ask, don't tell" situation, and more common than one would think. The iron-rich blood is good for people receiving transfusions as they are often anemic, and it's free rather than the patient paying to have their blood taken and thrown out (such a waste!). Of course, it's totally up to the individual because I know some are uncomfortable with the deceit, however I for one don't mind in this case, since it helps others in the end!
*Thank u 😊*
Welcome 😊
My dad had this. He was an alcoholic who died at 51. How likely am I to have this?
A strong chance. I would suggest strongly you get tested. The longer you live it the more damage is done.
@@mickjconroy6197 depends if it was genetic or alcohol-related...?
similar here
thank you sooooooo much
fantastic
Having to go on birth control to contain my cysts (so I don’t have periods) caused me to develop symptoms at 22… no doctor will take me seriously
I’m also 22, I was diagnosed with narcolepsy we just found out my grandma has this, now I’m starting to think I might as well and it might not be narcolepsy. I was on birth control in hs and my symptoms were much worse then
Girls, don't listen to doctors! You are young, I am 40 and just looking into it. Get off the birth control, change your diet, check your iron levels regularly if you can.
Good work keep it up
Great and clear summary, thanks.
I have just been diagnosed with this at the age of 44 but my iron was only 590 they caught it early but still feel unwell
They caught my iron when it was 40, but my ferritin was 2100. (norm is 15-560, but a 32M should be around 300)
They got my ferritin down to 100 about 6 weeks ago. 2 weeks ago they measured again and it hadn't moved. So they think I'm relatively stable now and only need to be drained once every 2-3 months.
@@AtotehZ wow.. yeah mine got up to 700 then immediately started phlebotomy and now down by half that.. giving blood is hard because I can only to 250 at a time and only every few weeks
sorry... :(
@@toneman8478 - you can try alternative therapies, like eating lots of cabbage, ingesting lactoferrin, IP6.
So when you have been diagnosed with Hemachromatosis. And been to every specialist, and told everything looks good. But still have terrible joint pain and heart issues. What to do next???????
I feel that drs do not take this seriously....I have so many symptoms.....and they don't care.....
@@bernie6817 What symptomps do u facing plz reply.
Great
Exam in 2 days m here ❤
nice
i have haemochromatosis but its not due to hfe mutation. i got me and my family tested they are negative. i am from india .the question is how it is possible in countries of south asia.
Bhai mera iron bhi 600 he
your teaching preety😘😘
Thanks!
I was diagnosed with Haemochromatosis In February 2020. I had been to many different Doctors over the years.. My Symtoms were Cronic fatigue, Foggy Brain, Low energy, heat sensitivity, I believe I have had this since I was a kid. I was always tired even if I had an easy day. Much worse if the sun was out and it was 75 or above. Had to pull over on the side of the highways and sleep for 2 hours even after I had slept for 10 to 12 hours. ( My question is when you get your Iron levels back down will you have higher energy and be able to function again fully? ) I give blood every 2 weeks for this problem. I'm wondering if i can give more since my ferritin levels were 800mg. My Dr. wanted to just send me to someone else once he found out I had this.. would of been nice if he would of drawn blood from me for a while before he shoved me off to another Dr. that I had to wait 3 to 4 months to see and wouldn't take my health insurance at the time.
good luck with it, Brad. Glad you're dealing with it. I found that the fatigue moderated with blood donations, but the damaged fingers remain.
Please research HIJAMA. Find a certified Hijama practitioner and try this. So beneficial for many issues including this. And little to no side affects. Hijama Nation Academy has a registry of practioners.
I have been diagnosed with haemochromatosis. I'm doing a venesection every two weeks, the haematologist wants me to do it until my ferritin level drops to 100 and then he told me that I can do a venesection twice or three times a year. I have already done 4 venesections so far and I feel a bit less tired, I'm still having brain fog though. How do you feel now?
@@max801I am about to start on the same path .Diagnosed today .My biggest symptom is bad body aches and fatigue.Are you feeling any better now ?
Did you have bad muscle aches ? I feel ole I’ve been hit with a bat every day .Just diagnosed today .
Iron in your blood is a minor symptom of a disease which was barely even mentioned here.
I am Iron Man... but my doctor think it's a good idea to have 500ml drained once a week till I reach an equilibrium where once a few months is fine.
Which does nothing to switch off your iron uptake system which works 24/7 no matter how much you bleed. If you think bleeding cures any genetic defect you are delusional. Don't believe the ''phlebotomy'' bullshit. Nothing can save us. They can drain a river of blood but your iron uptake system goes on sucking up the 7 pints they leave behind. Don't be fooled. You need a drug called deferoximine. Look it up.
@@marknovak8471 I have never read anyone making the case that phlebotomy cures it, rather taking the load of the internal organs. Huge different. The pharmaceutical alternatives has way more side effects than just draining some blood.
@@carlsiren How does it take any load off the organs? It removes none of the accrued iron already there and the loss of blood doesn't determine the rate at which one's body sucks up and distributes iron to the organs. At no stage does bleeding address the actual disease. It barely addresses ONE symptom. Iron in your blood is not the disease. It won't stop your joints aching and it won't stop your heart failing.
@@marknovak8471 You are wrong. The condition in itself is not harmful, however the effect of the condition is - the iron overload. If you mitigate the overload with phlebotomy you also mitigate the side effects of having systemicly high iron levels. Given that the overload is found in time, average life expectancy is normal for a person with hemochromatosis.
liked and subs.
thnx man
💯💯💯
Treatment- iron chelators??
yes, eats lots of cabbage preferably uncooked. Warning : flatulence.
You could try IP6, lactoferrin and curcumin.
Haven't found much evidence about chelators, but if you do not support the vassectomies, it might be a good idea.
👍x 10^6
Is it type 1 or type 2 diabetes?
It can be either. I was initially presented with a coma from Diabetic Ketoacidosis and clearly was type 1 as the excess iron killed off my islet cells in my pancreas. A heckuva way to start the whole shebang!
@@silasmarner7586 hi what tast should I have to find out pls thank u
@@silasmarner7586
Sorry to hear that. What's your condition like now after the anti-iron protocol. Has the pancreas regenerated or still type 1?
@@zozansinde9610
DNA testing is best, according to some of the comments above. A simple way is to google up the symptoms of excessive iron and you can intuit from that. In fact this video here already lists a number of the common symptoms so just go over them. Finger joint pain, liver spots and general ageing signs are all suspect.
Depends on where the excessive iron is stored. Generally,
If liver, spleen ------ > type 2
If pancreas ------ > type 1
This video is not truthful. I'm 36 female .I have 2 copies of mutated genes on chromosome 6.There's not enough research into this illness & these videos are not factual, it's guesswork at best.
10 years ago I presented this problem my Dr talked-about eating Lee's meat and cutoff Iron Intake which I did and the Iron levels never went down and tru DNA testing a was dicnosed whit hereditary Himocromatosis ..
the funny part is I am a female from Colombia 🤷♀️🤷♀️🤷♀️🤷♀️ and this illness happens only to Caucasians or European Males over the 50s...
My gray gray parents are from Spain that maybe explains why..
- I still have my periods
1 year later the Joint pain was bad now I have Rumatoid arthritis
the Iron levels and ferritn R Normal thank goodness..
I did had flabotomys
1 pint per month for 2 year"s Sice then I am under control obviously watching what I eat and seeing the oncologist every year..
my Surprise a lot of Dr Don't know a bout this..
Male from Brazil with Italian/German ancestry. Never thought this diseases would be a reality for me.. Currently under treatment, let's see how it goes
Thumbs down for this nonsense
thank you .
Thank you