I don't get it they told me i couldnt donate blood because of hemochromatosis.

My brother was recently diagnosed with hereditary hemochromatosis at levels over 600. I asked my doc to run a complete iron panel and she reluctantly ran this: iron binding capacity, UIBC, iron, iron saturation, Ferritin. I'm 54 (no uterus) and my FERRITIN was high, range of 15-150 per LABCORP and mine was 219. Also when it comes to lab ranges Quest shows for someone my age that normal is 16-232 so if that's the case and I'm at 219 am I really in range afterall or do I have to go by LABCORP ranges since that’s who did the test? My Doc said nothing to be worried about and that's that. Do I need to push for more tests? What is the exact genetic test that I need to ask for? She doesn't seem to know about it at all and I don't know if I should see a specialist or not? I also have Hashimoto's, active EBV, MTHFR c677T and feel like I struggle every single day with inflammation, fatigue, brain issues, weight gain, joint pain, etc. My a1c rose to 5.9 but I brought it down to 5.7 over a period of a year. I made her prescribe me a continuous glucose monitor which is super helpful but still trying to figure out why my glucose seems to run high (130) during the day and sometimes super low (55) at night. Especially when I don't eat carbs or processed foods & I try to intermittent fast most days. But I do like my wine with dinner which I'm trying to stop. I know that's a lot but I'm a bit of a mess. I wish I could find one doc or one naturopath that was really good at figuring this out without throwing meds and or 20 supplements at me. When I try to be my own advocate I get that glare. take care!

It’s a win win situation

I started getting atrial fibrillation at 29 after feeling tired and stressed for a long time. I started taking a beta blocker and at 31 developed arthritic thumbs and index fingers. Wish that even one Doctor would have run an iron tibc test instead of me not finding out about it until now at 33. Lucky I found out now and not later in life after more damage has occurred. Hepcidin replacement is a potential cure for hemochromatosis. There needs to be more screening for this hereditary condition. It's somewhat common but I suspect a large part of the population is underdiagnosed due to the lack of awareness of proper testing

That one guy looks sick

Been going all year now for 1 unit per week of blood taken. I was at 1298 was tested few weeks ago i was at 180 find out today latest levels. Need to be at 50 before i can donate my blood. Good luck lass with your treatment.

May I ask you your levels? Mine are 190 iron serum, 390 Ferritin, 210 Transferrin. I am going to have the Hfe gene test soon.

Tiredness and fatigue is also a symptom of iron deficiency.

Thanks for all this information. It has been very informative. I was diagnosed with haemochromatosis 5 years ago. Just diagnosed with osteoarthritis in the spine and SI joints recently.

Thank you very interesting

What's the difference between hemochromtosis and haemochromotosis? I see it spelled differently all the time, but ppl are explaining the same disease. I'm just curious because I've recently had some suspect lab work done and my Dr. Is thinking I have this.

My tcbi is 180 mcg/dl. But my lab range shows as normal. How? My iron is 114. And saturation on my lab result shows 39% which if calculated 114/180 = 63%. Any suggestions whats could the results mean?

What did the endocrinologist find that led him to the hemachromatosis diagnosis? That’s what I wanna know.!!!??

42 only found out last week been in bits since i was 20 with it to parro and hard to go the doctors any advice on food?

I’m sorry you have this blood disorder. My dad was dx’d in 1985 & my siblings & I were tested and found out my brother also had it. That was when we found my mom was a carrier, her dad’s family had it. I’m a carrier but my children are all ok. I’ve lost my dad, brother, a paternal cousin & maternal aunt to liver disease from Hemochromatosis. (USA version) Thank you for making people aware of such a common yet under diagnosed disease.

I hope you always feel healthy Miss. Also, I found out by chance like you. I did a DNA ethnicity test and I found out I'm 20% Irish-Swedish. After that, I bought a hereditary diseases kit for my results and I learned I'm carrying heamochromatosis on gene HFE H63D. That disease is common for Irish and Swedish descendant peoples and that disease aka Celtic curse. Miss, you have blue eyes and maybe you have Swedish or Scandinavian origins. Maybe you have Swedish-Irish origins like me. Thank God the HFE H63D gene has less impact. The C282Y marker is the most impactful one and my gene does not carry heamochromatosis on that marker. Dear KZbin community, if you have Swedish or Irish origins, I strongly suggest to go to the hospital for a check-up. Also, I strongly recommend doing a DNA test. I didn't know about my Swedish-Irish origin until the DNA ethnicity test results came.

IP6-inositol and curium will help prolong the phlebotomies. You'll be fine.

I always felt better giving blood that was the first sign i had higher iron levels

What was your ferritin level? I have the genetic variants and my ferritin is greater than 2000. 2000 was the max reading for the test. My iron is 208. My symptoms have been severe for about 10 years with mild symptoms before that. I'm almost 42. I figured out what i had after requesting an iron panel after 23and me DNA test showed i had the generic variants and i had all the symptoms.

Hey! I am 27, based in England and I was diagnosed a couple of weeks ago. I've had quite a few symptons unfortunately

You need cooked cabbage.

Congratulations on discovering and correcting it while you’re still so young. Fountain of youth. Your family is lucky too. 👍

I’m getting tested for this. I am the one pushing my dr because even though my rbc are high they say everything is normal I said no I want to check this. Dr mentioned this

I have this

My dad is super young too.. he found out about 2 years ago.

I have Compound variant, Heterrozygous. I have Atrial fibrillation and T2 Diabetes all apparently NOT caused by it 🤷🏼‍♀️

what level ferritin to you try and stay below and what's your TSAT%? Ideally if tsat% is above say 33% it's good to bleed when ferritin is 50 or above but if tsat% is below 33% you can let ferritin get up to around 80. Oxidative stress is said to begin when ferritin rises above 100 and the sweet spot of ferritin is around 60-80 providing your tsat% is healthy, under 33%.

Diagnosed yesterday but unsure because the symptom that put me on this path is severe “ muscle “ “aches” not pain but aches and fatigue …anyone else feel Ike they were beaten with a bat ?

Possibly another associated disease: Iron-Storage Protein Ferritin Is Upregulated in Endometriosis and Iron Overload Contributes to a Migratory Phenotype

Im 53 i got diagnosed with hireditry hemochromatosis last week i was misteriosly loosing weight now i no why iron overload as soon as i go back to my doctor i want to start donating my blood to get my iron levels down then maybe i can gain weight back

Im 53 i was diagnosed with hireditry hemochromatosis on Thursday after having my iron blood test my iron levels have always been low nowu no wht I've been loosing weight for no reason i have osteoarthritis in my neck also

I found out I have C282Y Haemochromatosis six years ago at 47 it took two years to rid my body of excess iron through weekly venesections! Its life changing but once you're iron is at a safe level, you can self medicate via periodic venesections. Your body will let you know when you're iron levels are increasing, you will start feeling very unwell, a quick blood tests will indicate how high your iron saturation (ferritin) level is, and give you an indication of how many venesections you need to drop your iron levels back down to a safe level. I hope this helps

Excellent. Good luck to You All 🍀🌞🍀

Fascinating

I had problems from Birth because of hemochroatosis. I had to have a liver transplant I have chronic kidney failure chronic pancreatitis and Rheumatoid arthritis. I just barely got diagnosed at 58. I also had to have a hysterectomy at 22. Both of my parents have it I had never heard of it before. Do all you can for yourself

I’m being tested for this medical condition as we speak as I have low ferritin and high iron with a lot of symptoms. I have a severe irrational fear of needles, to the point I pass out. I’ve become worried that if my only choice is to have regular needles put in me, I don’t think I can do it.

I have a question: if your serum ferritin is in the normal range and your TF is moderately high (60%), why would you have fatigue? What causes the fatigue?

Another great reason to donate blood, as in my case at least that works to keep the iron in check. More info on my journey on this channel in the comments on the "I found out I have haemochromatosis" shorts video if anyone is interested.

I started my journey(mid 50's) with knee arthritis that got very bad, then debilitating leg muscle cramps and crazy weird chest pains that felt like a needle was running through me. Pains in other joints began(arthritis I believe). Long story shorter: A ferritin test was an excellent pre-diagnosis, then the phlebotomy treatments brought my ferritin and iron down. The only symptom now is the arthritis, but in my case the knees got a bit better, but still not near as good as they were. My ferritin level went from 2100 down to levels it should be in just under a year.

Haemochromatosis, I am 13 I have Haemochromatosis my hands shake alot

I'm here because I really want to see if my father is anyone in insightful video or information please let me know I will pay

How you are dealing with it ?

what are the geneotypes at 12;25? how is that graph made?

Its so hard getting a doctor to refer you or atleast try and diagnose you with this disease in Australia Its like they dont want to know about it I had to see a dozen doctors before finding one that agreed to do full blood test for iron studdies etc A dozen!! Now one year later I finally got to see a haemotologist and a diagnosis But man.. why are Australian doctors so fkn useless? Telling its just the flu etc . Morons i could've died

I found out about 3 days ago .

I'm surprised HHAustralia is so ignorant of the facts. Phlebotomy goes back to the 2nd Century BC and you should look up a ''doctor'' named Eristratus. Bleeding an Amazon of blood does NOT repair a defective gene nor does it interfere with the process by which blood iron is transported via your blood to your body's organs. An excess of iron in your blood is TOXIC (and you should perhaps look up ''acute iron poisoning.'') The first thing it damages is your veins and arteries, and it gets worse from there. I have aneurysms in both legs and a two inch aortic aneurysm nobody in this backward town is going to do anything about it. I was called ''an idiot with a stomach ache'' and a ''lying hypochondriac by the Muslim woman who runs the casualty department at Wagga Base Hospital, after the chick doing the ultasound missed it. Calvary hospital found it within seconds of starting to look. I would not trust these worthless quacks to crack my chest at gunpoint. As soon as my mother's estate is released to me I'm off to Thailand (Bumrungrad International Hospital in fact) to have it repaired before it bursts and I DIE. Most people will not find out they have HH until their 40's or 50's, by which time they've suffered 4 or 5 decades of slow iron poisoning. Bleeding does absolutely nothing to repair this damage. I dare you, ask a doctor what Hepcidin is, what ferroportin is, what Deferoxamine is, what Iron Chelation Therapy is and you'll get resentment from an idiot who has no idea of what you're talking about. Australian doctors are DANGEROUSLY bereft of facts regarding HH. I've been using Iron Chelation Therapy for 13 years and have made it to 62. Most HH victims will die before this age. My sister, Rose, made it to 52. Bonny E., a friend of mine for 40 years, died in 2012 at age 52 (i went to school with Bonny). If I was an American, Canadian or maybe even European I'd be prescribed Deferoximine and I could opt for IV Chelation therapy. Talk to an Australian doctor about either and you'll get a blank look and resentment from an idiot who has no idea of what they're talking about. They'll simply tell you to go donate blood to a blood bank, which will NEVER get rid of the excess of iron, and it's THAT iron which will eventually kill you. My symptoms started in my mid-30's. Human skin, including my own, feels like snake skin and I find being touched by anyone to be seriously disturbing. It killed off my sex life and in no small way contributed to my wife's suicide. Chronic fatigue kicked in at the same time, something no clown doctor has ever addressed. Foggy thinking kicks in later, as does breathlessness. ALL of my joints ache and keep me awake, but no help from the idiots calling themselves doctors in this backward country. I was called ''a junkie looking for cheap drugs'' by one clown I would have physically assaulted if I were 30 years younger. My advice is to stop listening to the idiot doctors in this country and look up Canadian and/or American sources.

I’m 16 and I have if from genetics it’s really hard for me and idk what to do any thing to help and get me better?

I have a ferritin level of 1016 but my iron test came back ok. I did an iron test and I saw 2 doctors and blood specialist and they tell me I have normal iron levels. I did a liver ultra sound and results came back normal. I am 55 and never had high ferritin levels come back in any of my yearly blood work results. Any suggestions / advice?

What would cause a 5 year old child to have high hemoglobin (15.4), high hemocrit (45.4), high platelets (477), high potassium (5.2), high calcium (10.6) and high iron saturation (46%), normal ferritin levels? FYI she is well hydrated.