So what did you do exactly pls?

what was your ferritin level ?

I thought giving blood was the best thing to brink down the iron level

Brought my iron levels down 3 years ago but still feel nauseous, foggy brained, weakness. Someone told the ferritin levels have to be adjusted also. But I don’t think the Dr.s know exactly what to. Everyone is different so I hear.

@@brad4004 testing me now I have Asperger's I have high transferin saturation but other s results iron ferritin are ok fybromyalgia symptoms years

Agreed!!!

We have recently collaborated with Australian GP education provider ThinkGP to develop and publish a free online learning Haemochromatosis module for doctors and health professionals. The five-hour package is accredited by professional bodies for doctor's continuing professional development requirements and has so far proved very popular with GPs. We have also developed a series of podcasts MY IRON MATTERS targeted for health professionals. So we are hoping these and other resources we provide will lead to a better informed medical and health profession.

My doctor used Google. 🇬🇧😞

I have received zero treatment for 100% of my symptoms. I won't even talk to an Australian doctor about it anymore. If the quack sitting in front of me can't tell me what hepcidin is they're just too dull and too ignorant to bother with. I have yet to meet a doctor who can tell me what it is. If you tell them you'd prefer iron chelation therapy your quack will end the conversation on the spot and you will be alone with your symptoms, as per usual.

​@@marknovak8471i would get appt. for an endocrinologist.. Asap. Always deal with professional.

Not in Australia there isn't.

Great result Emily. Early detection and family screening are the keys to success.

If you've been told that by draining some blood that somehow fixes a genetic defect where your body keeps absorbing iron 24/7 you need to get another doctor. Venasections do nothing. I personally won't have them. I use EDTA instead. The Americans have used it since the 1940's to treat heavy metal poisoning and still use it to this day for the same reason. It's been keeping me alive for the last 10 years although that's coming to an end. Watch Canadian HH videos.

i was just dignosed at 17

You don't ''catch'' HH. The moment you are conceived you have it.

My story is the same. My sleep specialist actually found out.

Good luck. Luck of the irish.......

​@@JasonMannersthey cut sleep team in our area. Especially for children

I have similar symptoms my ferritin is 389 looking to get an iron level check I've also got an ultrasound on my liver and found something I suspect iron buildup not sure hoping for an MRI to make sure if there is deposits on all organs. I noticed I was easily angered more but I also take epileptics (keppra) which was high on my blood test maybe could be due to iron. I workout consistently nothing intense.

I had a blood iron reading of 1265 before I began Iron Cheleation Therapy, something you don't need a quack doctor for. My last reading was 350. I haven't had a single ''venasection'' in my life. I'm 62, at the upper limit of age before one dies. I have an aortic aneurysm which the quack doctors in this town have no intention of fixing. I'll be flying to Bumrangrad Hospital in Bangkok to get it fixed.

Are the levels normal now?

I often wondered if they tested people in jail. .. What the results would be. In fact I wrote an article about it.

I'm recommending the use of something other than idiotic venasections which do zero to remove iron from your organs - and THAT'S the iron that will eventually cause one of your organs to fail, not the free iron in your blood. The Yanks and Canadians have chemicals which remove iron from your heart and liver (deferoxamine). In Australia they piss in your pocket until the day the HH kills you. Good luck. I mean it.

Two copies of the same gene means you have HH. My sister died at age 52 from a heart attack (in fact an aortic aneurysm). My friend, Bonny Elliot, died four years later also aged 52. She looked like she'd been rescued from Auschwitz.

How did long he figure it? What was a stage (if you know)? And how long did he die? Thank you.

@@nguoimangkieng3280 there really isn't stages with it. A person can live several years with it if you are very careful. If a person drinks or smokes it's advisable to stop. You don't want anything that will affect the liver. That being said any medications that are processed through the liver like tylenol, metformin, or cholesterol medications to name a few is a definite No-No. You have to research, research, research. Doctors still don't know a whole lot about it. Guys tend to get it while women tend to get lupus.

@@beckylangley4833 females get it . It's just more uncommon

They say its mental health. Then say its poor diet that's destroyed the liver. There's a reason its called "the celtic curse"

My aching joints and chronic fatigue, as well as tactile/sensory changed which cause me to feel human skin is like snake skin - smooth and with a polished wax feel to it, were obvious by age 35 in 1996. It had a lot to do with my wife checking out in 1999. Neither of us knew what was going on. I found out 11 years after my wife gassed herself in her car.

Sorry Question not quite clear to me. Do you mean you have had a genetic test which showed you are C282Y homozygous (Two C282Y mutations of the HFE gene)> If so you are at risk of iron overload regardless of what you eat.

My son has spherocytosis as they say it is hereditary but yet cannot be determined where it came from on either side... Willie found this out when he was 5 years old and got really sick with a headache and couldn't even be in a room with anything electric plugged-in he blacked out going to the bathroom and I took him to the emergency room where they said he had our SV which is respiratory and sent him home the next day he had a hundred and six point five fever I took him back in and they immediately did test results and he did not have RSV the doctor came in and said that he had leukemia like cells and that he was going to be transported to the Children's Hospital in town... posted up at the hospital for 2 and 1/2 Weeks not knowing anything until the last day that they let us go home with no restrictions whatsoever he had tested positive for parvo later we found out that he had spherocytosis and that the Parvovirus had created his immunity to lower his iron levels to a 3 and he ended up having several blood transfusions and has been seen for blood work every 6 months since he was five he is now fifteen years old... And not a whole lot of anything makes sense how do I find out more about these mutated blood cells that don't seem be liked by his spleen and it is quite extravagant late enlarged making his bilirubin extremely high causing jaundice and him being quite depressed

Drinking milk can reduce iron absorbtion by 50 to 60%. It's the reason why this mutation is so high in traditionally drink milking peoples, it was beneficial when the main food was milk. Before the introduction of the potato, most Irish lived almost entirely on milk. Over half of the calories came from milk.

You need two copies of the one gene to have HH. One copy of the two gene types means your gene is defective, but defective genes still work for the most part. I wouldn't worry too much but if you want children I'd get a gene test for your partner. Two of you with a half defective gene will give your kids a 50/50 chance of having full on HH. Me and my eldest sister wound up with it, 3 other sisters did not. My sister died from burst aneurysms in 2005. I now have one myself and have to go to Thailand to get it fixed - I don't trust any local quack to crack my chest, thanks all the same.

How old are you? What sort of symptoms did you have? I'm 26 and think I might have this since I'm always exhausted, have pains and other symptoms. I was put on SSRIs for 6 years, did nothing good for me. I think it might be hemochromatosis but I've never been tested for it.

Do u have this can u tell me what tast need to be dan to find out thank u

It is possible but impossible to make any real connection until you see a doctor and have blood tests done to see how your iron levels are. Those symptoms are common with iron overload from haemochromatosis (achy & tired anyway) but also for lots of other reasons and conditions. If it is haemochromatosis related, your iron levels (serum ferritin and transferrin saturation) would be well above normal. If they are not probably best to look elsewhere for a cause.

Do you get headaches?

Yes, around the eyes - me too.

Blood donation( whole blood) at least 3 times a year

I have the to is ben 5 years stell no diynos am very sik what tast I should do to find out pls help

@@zozansinde9610 ask your doctor for a genetic blood test to see if you have hemochromatosis

If the brain fog is caused by excess stored iron then treatment does generally greatly improve this as iron levels return to normal.

This would be interesting research

Iron levels in the blood are included in routine test but to detect stored iron tests are needed for transferrin saturation and ferritin levels which are not included in regular tests (would be good if they were). More info haemochromatosis.org.au/haemochromatosis/#iron-studies

Hi Sage Hard to say what is normal but your ferritin is above the reference range but your transferrin saturation is well within the range. Normally if iron overload is involved both transferrin sat and ferritin would be above the range so there may be some other explanation for higher ferritin. Talk to your doctor about other potential issues. It might be just a temporary rise too.

@@HaemochromatosisAust thanks! I'm planning to donate blood. How much ferritin would drop if I were to donate 500 ml of my blood?

@@aachaitu You can't really predict that accurately. It depends if the ferritin level is elevated because of iron overload or some other factor. If you don't have genetic haemochromatosis it may not have any effect. Even when you do have the genes the rates will vary from person to person. Donating blood is a great thing to do regardless and won't do you any harm.

⚠ Do a test to check your kidneys + drink WATER (this will help )

@@aflyingreaction4093 My kidneys both have cysts but they've been there for years and I've been assured ''we all have cysts in our kidneys.'' My liver is much scarred, but seems to be doing alright. It's my heart that has recently developed a bulge in my aorta that'll nail me in the end.

It's not just ferritin. There can be many reasons why ferritin is high. Transferrin saturation is also usually above normal and both then you should have a genetic test.

Hi - very difficult to provide any information with just this limited info in your question. I f you are in Australia I suggest you ring our INFO LINE 1300 019 028, Fatty liver is acknowledged as a potential cause of elevated serum ferritin.

@@mtonykaye Yes that's true, but would it cause 95% saturation? Seems high compared to what i've been told for fatty liver.

@@qbb01 Not sure about that. Fatty ;iver is outside our scope. However with Transferrin saturation and ferritin levels like that a genetic test for haemochromatosis is recommended. You could have both.

sat of 95% with ferritin of > 150 is often HH.

Yeah the reference value was 50-120, and I’m to young to donate

@Smatt that’s great cuz I usually eat a lot of curcumin but around the time of the test I haven’t had any for a couple weeks also recently haven’t been eating as much but sure will start eating more again

Today I found mine 600 ug/dl😭

@@akashmadde271 bhai age kitne hee

@wannabepro2186 I started donating plasma about a year ago. My very first visit, they wouldn't let me donate plasma because my hematocrit was low. They said take some iron and it will bring up your levels. It did and I was able to donate. About 3 or 4 months later, I started getting nauseated which started getting worse and worse and sometimes had projectile vomiting. I had stopped donating plasma for a while because I was so sick all the time. I had an endoscopy and colonoscopy thinking it had to be cancer to feel so bad & the symptoms mimicked those of a million other things including colon cancer. Fatigue, weakness, nausea, vomiting, weight loss, night sweats, swollen lymph nodes, etc. I had a friend come to visit and I guess I was so busy getting ready for the visit that I didn't take my meds for almost a week. I had not had as much nausea and didn't throw up at all. Then it hit me like a ton of bricks that maybe iron could be the culprit. I am not sure why this popped into my head right then, but I asked Dr. Google (LOL) and after a little research realized that maybe it could be iron overload since none of the other GI tests showed what could be causing this. I probably should have waited to reply until after I find out for sure, but I saw your post about the nausea/vomiting and have been looking for others with this same symptom. I will try to come back and post after my blood work to see if this is the cause. It would be such a relief because being nauseated all day, every day and then throwing up all the time is not how I want to live.

That seems to be the problem. The iron overload will make any other issue you have much worse. So the doctors try to address that other issue and miss the iron issue.

Fatigue is one of the most common symptoms of iron overload from hereditary haemchromatosis, along with joint pains (not so much muscle cramps). But you can have the genetic risk and even iron overload without symptoms too. Also the muscle cramps may be due to some other cause but you could still have the genetic risk of HH.

@@HaemochromatosisAust not cramps but aches ,deep aches

Tiredness and joint pain are the most common early symptoms reported but everyone is different. Other symptoms can develop as excess stored iron increases. See haemochromatosis.org.au/symptoms

Not being able to focus, joint stiffness, fatigue, mood swings, abdominal pain are some of the symptoms discussed.

you can hardly find the symptoms anywhere really - they just cover some basic ones online..

Me too...coincidence ? Hmm

NEVER GET VACCINATED!!!!!

Vaccines are poison

I never had a problem either until I got a Yersinia infection. And lots of my symptoms got better after taking antibiotics. My mother, who had been stable with schizophrenia (which might be due to iron overload due to homocygotic H63D mutation) went totally crazy in a couple of days. It took me (compount heterocygotic, C282Y and H63D) some weeks until I had neurologic and psychiatric symptoms. All of those went away after antibiotics which I needed to buy myself because no doctor would treat me properly... I also took resveratrol (Japanese knotweed) and baicalin (chinese scullcap), both of which can chelate iron and resveratrol can increase hepcidin which is the molecule people with hemochromatosis often lack. The antibiotics I took (doxycyclin) also is an iron chelator. I was stable until some monthes ago when I underwent vitamin C infusion as a preparation for a dental implant and all my psycho-shit came back. Vitamin C is known to increase iron absorption as well as worsen Yersiniosis. Took some of the chelating as well as antibacterial herbs and I was okay again.) Funny thing is that Yersinia love iron and iron-overdose is a high risk factor for severe or fatal Yersiniosis and my psycho-symptoms consisted of "craving for blood" (clinical vampirism) and severe mood swings between rage and depression. I found several accounts of people who had mood swings or anxiety attacks likely due to Yersinia infection. I also was pale as if highly anaemic. I wonder how the infection, my genes and the symptoms relate to each other...

Ikr. I have joint pain, heart palpitations, muscle spasms, muscle twitching, shortness of breath, brain fog, jerks, abdominal pain, fatigue, weakness a few more and they are just talking about how they were tired

There should be a result for ferritin or 'serum ferritin' as well. By itself, one test does not mean a lot. Check out this page on our website haemochromatosis.org.au/diagnosis/

How do you feel now?

@@lilbeviltwin I don't think i feel the affects as much, I'm now 17 but I used to feel very tired all the time but I've not been feeling like that recently

@moonbunny7380 good to hear,how's you're red blood cell count?

@@lilbeviltwin I don't know