I'm 71 and diagnosed 7 yrs ago. Full blown, ferritin reached 4700 before 1st phlebotomy. Chronic severe fatigue,, brain fog, every other symptoms to some degree. Quarterly blood tests, annual phlebotomy. Killed brother and father, other brother a carrier. Lose ground every winter and this may have been my last. Wish you all better luck. Good doctor is crucial.
@@faizhalbogime187 I've had 7 doctors, including a cardiovascular doc and 3 Hemotologists. 2 of the 7 were good/competent and both were women. The others could be dangerous in their own ignorant way. Not getting better and am worn out. Wish I had all day to talk with you and others, could hopefully help you with anything I've gone thrru.
@@garywright3781 thanks for replying to my message … why not create a video on your story. It would be of great benefit to all of us👍. You are right regarding doctors’ ingnorance😩 i do all the hard work when it comes to reading the latest research paper on my disease and FDA guidelines. On top of that I read and check medicines interaction!!!! We go to the doctor office just to get their approval on the prescription 😩😩😩😩😩
@@faizhalbogime187 I really wish I could share my story with everyone who has or may have Hemo. But, I'm a technological dinosaur and really am most helpful if people have questions. Two true things I have experienced. You can have ferritin level out of this world and be anemic at the same time and also have quickly rising iron and saturation levels without your ferritin increasing noticeably. Tell your doctor to explain THEM. Will communicate any way I can.
My ferratin was slightly higher than normal, and I never eat red meat, nor take iron supplements. My red cells were also larger. I've been very fatigued, muscle weakness....shocked I had an enlarged liver on CT and I don't drink, never did drugs, do not have hep A,B,C nor any virus. 23&ME testing showed one marker for Hemochromatosis. Yet, my doctor WONT order a genetic test to see if I have the other marker. 23 & Me doesn't test for all of them . I've always been mostly vegetarian, started GI swelling and super fatigue suddenly a year after menopause. I still don't know if I have this, doc wont order tests. WHY?? My uncle and grandmother both died at 59 of "natural causes" too?
Personally I think your Doctor should sort this out for you. You could maybe get a private test... I do hope you can get some peace of mind quickly and here's hoping you'll feel Better very soon. Bestest wishes, Mel 🍰🌻
I was told by a Hereditary Hemochromotosis Nurse at the HH clinic that many people, esp women , with the H63D Heterozygous mutation (one copy of the MUTATION ) can experience very severe, life long worsening symptoms too !. So we need proactive healthcare interventions. like diet and supplements to prevent the disease from progressing into full-blown Hemochromotosis ! this is a hereditary metabolical disorder and effects your entire body but esp your liver, heart and brain. Has anyone heard of the Co Q10. enzyme supplement ? I i wonder would this help control some symptoms ?
Age50, white female, 5’6”, 112 lbs. No alcohol. my labs are in. I have extremely high iron levels. Don’t know the numbers yet. She mentioned hemochromatosis. After the doctor gets my other blood work in she will call me and go over everything. For 7 years I’ve been going to doctors and specialist. I’ve had severe pain ion left top of my stomach area. If pushed on tears literally rolled out corners of my eyes. I’d jerk and grab my doctors hands. So painful. I’ve passed out lot of times from the pain. My belly bloats and it pushed up into my lungs. I’ve lost muscle tone. I have muscle pain and my hands hurts so bad!! I feel so stiff and with every move it hurts! Especially when I wake up! I have fatigue and weakness in my legs that I can hardly walk . I have to take small steps and have fallen several times. Nothing serious. My heart feels like rapid beating with vibrations in my chest and stomach. My hair gotten very thin. And I’ve been sick for so long I just don’t care about my looks and hygiene anymore. Most days it’s hell to get in and out bath! It takes all my energy and strength! And honestly it’s just left me that I don’t even think about it anymore. For some time my memory was horrible and I couldn’t figure things out. I’d wake up and would sit and cry. I knew my 9 year old son was in school but I could not remember which school. This happened almost every morning. That’s just one example . I use to sleep 14 too 16 hours a day. At least I don’t do that anymore since I’ve stopped taking certain medications from my doctor treating for depression. That’s most of my symptoms. Don’t know if this indicator… at 20 I had thyroid disease. At 37 breast cancer. 16chemo 33 radiation treatment. Ya know I pray I finally have an answer !
Many symptom similarities to me. The reason docs are so poor at diagnosing Hemo is it is different in every person and I don't care how many books you've read or patients you think you have treated, unless you have it you don't have a clue what it's like or how to make it better. As far as pain goes, mine is severe and constant but I've had a prescription to Tramadol, a weak opioid, for 5 yrs and it does handle it. However, extremely addictive, may cause constipation and no alcohol whatsoever. Worth it to me. Wish you sincere hope someone can help you.
Thank you from the UK, I found this very Interesting. I an currently trying to establish if I have it. I apparently have a high Ferritin level, my father was Irish and my mother Scottish… We will see. Either way, very interesting.
@@accountabilityisadmirable They stopped issuing slots for blood tests, so I haven’t progressed any further! I was given a code and a web address to book and it just said no available tests at this time and I couldn’t even add my name to a waiting list. I will try again shortly because I heard a rumour they were up and running again but I won’t hold my breath. 👍
Is the opposite true, can you have Hemochromatosis without an above normal range ferritin? If serum iron is high and heterozygous for 2 gene mutations? Or are you just considered a carrier?
Have a look at Prof Brissot's video in the 2020 Membership Lecture Series Playlist called "What's New for the Definition, Diagnosis and Treatment of Hemochromatosis in 2020?" He answers that question in the Q & A section, but the whole recording is informative to watch.
For those of you wondering if you have hemo, take the 200 dollar DNA test to know for sure. If you do, don't take it lightly and don't assume you are seeing the worst of the disease. Hemo, if not diagnosed until later in life, has already damaged you and will never stop trying to do more until later some facet of it, usually heart failure, kills you. No cure, no remission. Giving blood gives you some short term relief. My experience with the medical profession is overall, very poor, and I am not optimistic about finding competency. I escaped most of the damage Hemo typically causes and the docs don,the know why, let alone why I am alive. With the damage I do have, this was never my definition of life. Have lots of knowledge and stories, wish I could share them with you.
I'm 71 and diagnosed 7 yrs ago. Full blown, ferritin reached 4700 before 1st phlebotomy. Chronic severe fatigue,, brain fog, every other symptoms to some degree. Quarterly blood tests, annual phlebotomy. Killed brother and father, other brother a carrier. Lose ground every winter and this may have been my last. Wish you all better luck. Good doctor is crucial.
Keep going Gary… I’m a similar case and reached 1800 at the age of 37… what doctor do you see for this issue
@@faizhalbogime187 I've had 7 doctors, including a cardiovascular doc and 3 Hemotologists. 2 of the 7 were good/competent and both were women. The others could be dangerous in their own ignorant way. Not getting better and am worn out. Wish I had all day to talk with you and others, could hopefully help you with anything I've gone thrru.
@@garywright3781 thanks for replying to my message … why not create a video on your story. It would be of great benefit to all of us👍. You are right regarding doctors’ ingnorance😩 i do all the hard work when it comes to reading the latest research paper on my disease and FDA guidelines. On top of that I read and check medicines interaction!!!! We go to the doctor office just to get their approval on the prescription 😩😩😩😩😩
@@faizhalbogime187 I really wish I could share my story with everyone who has or may have Hemo. But, I'm a technological dinosaur and really am most helpful if people have questions. Two true things I have experienced. You can have ferritin level out of this world and be anemic at the same time and also have quickly rising iron and saturation levels without your ferritin increasing noticeably. Tell your doctor to explain THEM. Will communicate any way I can.
@@garywright3781 thank you so much . I really appreciate your insights on this issue. شكراًfrom Saudi
My ferratin was slightly higher than normal, and I never eat red meat, nor take iron supplements. My red cells were also larger. I've been very fatigued, muscle weakness....shocked I had an enlarged liver on CT and I don't drink, never did drugs, do not have hep A,B,C nor any virus. 23&ME testing showed one marker for Hemochromatosis. Yet, my doctor WONT order a genetic test to see if I have the other marker. 23 & Me doesn't test for all of them . I've always been mostly vegetarian, started GI swelling and super fatigue suddenly a year after menopause. I still don't know if I have this, doc wont order tests. WHY?? My uncle and grandmother both died at 59 of "natural causes" too?
Personally I think your Doctor should sort this out for you. You could maybe get a private test...
I do hope you can get some peace of mind quickly and here's hoping you'll feel Better very soon.
Bestest wishes, Mel 🍰🌻
Thanks for sharing this important information.
A better company is 3x4 Genetics, and it's user-friendly. I've trained with them, and I'm so impressed with their science.
I was told by a Hereditary Hemochromotosis Nurse at the HH clinic that many people, esp women , with the H63D Heterozygous mutation (one copy of the MUTATION ) can experience very severe, life long worsening symptoms too !. So we need proactive healthcare interventions. like diet and supplements to prevent the disease from progressing into full-blown Hemochromotosis ! this is a hereditary metabolical disorder and effects your entire body but esp your liver, heart and brain. Has anyone heard of the Co Q10. enzyme supplement ? I i wonder would this help control some symptoms ?
Age50, white female, 5’6”, 112 lbs. No alcohol. my labs are in. I have extremely high iron levels. Don’t know the numbers yet. She mentioned hemochromatosis. After the doctor gets my other blood work in she will call me and go over everything.
For 7 years I’ve been going to doctors and specialist. I’ve had severe pain ion left top of my stomach area. If pushed on tears literally rolled out corners of my eyes. I’d jerk and grab my doctors hands. So painful. I’ve passed out lot of times from the pain. My belly bloats and it pushed up into my lungs. I’ve lost muscle tone. I have muscle pain and my hands hurts so bad!! I feel so stiff and with every move it hurts! Especially when I wake up! I have fatigue and weakness in my legs that I
can hardly walk . I have to take small steps and have fallen several times. Nothing serious. My heart feels like rapid beating with vibrations in my chest and stomach. My hair gotten very thin. And I’ve been sick for so long I just don’t care about my looks and hygiene anymore. Most days it’s hell to get in and out bath! It takes all my energy and strength! And honestly it’s just left me that I don’t even think about it anymore. For some time my memory was horrible and I couldn’t figure things out. I’d wake up and would sit and cry. I knew my 9 year old son was in school but I could not remember which school. This happened almost every morning. That’s just one example . I use to sleep 14 too 16 hours a day. At least I don’t do that anymore since I’ve stopped taking certain medications from my doctor treating for depression. That’s most of my symptoms.
Don’t know if this indicator… at 20 I had thyroid disease. At 37 breast cancer. 16chemo 33 radiation treatment.
Ya know I pray I finally have an answer !
Many symptom similarities to me. The reason docs are so poor at diagnosing Hemo is it is different in every person and I don't care how many books you've read or patients you think you have treated, unless you have it you don't have a clue what it's like or how to make it better. As far as pain goes, mine is severe and constant but I've had a prescription to Tramadol, a weak opioid, for 5 yrs and it does handle it. However, extremely addictive, may cause constipation and no alcohol whatsoever. Worth it to me. Wish you sincere hope someone can help you.
Thank you from the UK, I found this very Interesting. I an currently trying to establish if I have it. I apparently have a high Ferritin level, my father was Irish and my mother Scottish… We will see. Either way, very interesting.
Hi Ian, how did it go did? did u get diagnosed ?
@@accountabilityisadmirable They stopped issuing slots for blood tests, so I haven’t progressed any further! I was given a code and a web address to book and it just said no available tests at this time and I couldn’t even add my name to a waiting list. I will try again shortly because I heard a rumour they were up and running again but I won’t hold my breath. 👍
Is the opposite true, can you have Hemochromatosis without an above normal range ferritin? If serum iron is high and heterozygous for 2 gene mutations? Or are you just considered a carrier?
Have a look at Prof Brissot's video in the 2020 Membership Lecture Series Playlist called "What's New for the Definition, Diagnosis and Treatment of Hemochromatosis in 2020?" He answers that question in the Q & A section, but the whole recording is informative to watch.
@@toomuchiron Thank you for your kind reply and information. Best regards.
Ty
For those of you wondering if you have hemo, take the 200 dollar DNA test to know for sure. If you do, don't take it lightly and don't assume you are seeing the worst of the disease. Hemo, if not diagnosed until later in life, has already damaged you and will never stop trying to do more until later some facet of it, usually heart failure, kills you. No cure, no remission. Giving blood gives you some short term relief. My experience with the medical profession is overall, very poor, and I am not optimistic about finding competency. I escaped most of the damage Hemo typically causes and the docs don,the know why, let alone why I am alive. With the damage I do have, this was never my definition of life. Have lots of knowledge and stories, wish I could share them with you.