I found out I have haemochromatosis

People discover they have haemochromatosis in many different ways.
- Some people have symptoms and talk to heir Doctor
- Sometimes it's because a family member is diagnosed and urges you to get tested
- Sometimes it is because your doctor is vigilant and thorough and orders the right tests as a part of a check up or looking for other conditions
- Sometimes it is just lucky.

[@3cardmonty602]

I found out at age 57. I was experiencing night sweats & leg cramps every single night. My ALT & AST were a little bit elevated. It wasn’t until I was sent to a Gastroenterologist that we found out my Ferritin was 4580. Off the charts. I had a severe fatty liver with Fibrosis. I’ve tried to “heal” my liver over the last 4 years with Milk Thistle and eating a low carb diet. As a result, my liver is no longer enlarged, nor fatty, and I’ve lost 150lbs - from 321lbs to 170lbs.

[@chuck4abuck1]

Thank you I just found out and it has rocked me

[@nopretribrapture2318]

@@chuck4abuck1 same here,waiting for appmt for third blood tests,been feeling terrible for years

[@kathbretherton2238]

Im 58 and waiting for blood test results to see if I have hemochromatosis. If I have, then it answers a lot of questions. I feel rough most of the time. All my symptoms have been put down to the menopause or stress! A routine annual blood check up showed elevated iron levels, liver function wasnt as good as it should be. The more experienced doctor I saw recently looked at my blood test results and has referred me for further tests.

[@chuck4abuck1]

@@nopretribrapture2318 Yes maam in one way it can wipe the medical slate clean . If you're having trouble thinking .body .aches .fatigue anxiety.depression. That's all going to be Hemochromatosis. You probably should cut down your red meat intake, stop any alcohol now. I have to say I have been feeling better the last few days and so will you 👍 You should also increase your dairy intake ...milk cheese etc . Prayers for you 🙏

[@thatisartnotpffft6368]

The leg cramps were debilitating when they'd happen. Found out I have Type 1 Hemochromatosis because my knee's arthritis got so bad I almost couldn't walk. I believe that jogging hurried the arthritis process, which had everything to do with me going to see the doctor. Longer story short, my doctor discovered the reason the arthritis was so bad and saved me!

[@karlbrown5457]

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

[@benjaminbritt7862]

If people can't do phlebotomy there's a drug called deferasirox

[@benjaminbritt7862]

I'm really glad it's helping, thank you and best of luck

[@marigoldmeadowsfarm7495]

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.

[@benjaminbritt7862]

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

[@sunbird8119]

I didn't realise it was such a big deal, after 15 odd years of knowing I've had it. "They" never told me how serious it is. Tell me what i need to know please??

[@UnderTheWhether]

If you haven’t already, I hope you’ve gotten your liver and kidney checked out.

[@sunbird8119]

​@PerswaesivPodcast liver yes but not kidney, they've been really sore lately! Will do, thank you 🙏

[@scotttucker2011]

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

[@thatisartnotpffft6368]

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.

[@alicamldere92]

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.

[@user-wb2no3bb5m]

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

[@leaht4982]

Was your ferritin high? I’m also currently being tested for this, my ferritin is in the normal range but my iron is quite high. The only reason my dr said she’s looking into it is because I have blood relatives with hemochromatosis

[@user-wb2no3bb5m]

@@leaht4982 my total iron is 151 and iron binding capacity is 309 my Dr said everything is normal range but I keep seeing my rbc as high but then I don’t know 🤷🏻‍♀️ much about what these numbers mean I hope you don’t have hemacromatosis

[@user-wb2no3bb5m]

I’m also having sharp pains and muscle cramps I never had this and looking back at labs this high RBC has been (since I’ve seen ) at least from 2021 to now

[@rory-x3]

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

[@ankitchamoli792]

How you are dealing with it ?

[@user-fd4vj4ct9m]

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

[@jacoblas1371]

Hi. What symptoms do you have? I became very unwell after binge drinking alcohol as it impacted my liver. So my liver was playing up. Initially they suspected it was the alcohol but iron studies showed my body is retaining too much iron and this is what made my liver more susceptible to alcohol. My symptoms are mostly liver related. Skin rashes Not producing enough bile Tiredness Poor wound healing Heart Palpitations

[@jeremymcadams7743]

​@@jacoblas1371my doctor told me I should stop drinking forever when I got diagnosed. You might want to do that too, along with giving blood to bring the iron down

[@csgriffith1]

I have this

[@Shirley-qh4st]

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.

[@HaemochromatosisAust]

It is just American vs Australian/UK spelling. In USA and Canada they spell it hemochromatosis. No difference at all.

[@Shirley-qh4st]

@@HaemochromatosisAust Thank you so much. It's funny how a simple difference in spelling can make an already difficult situation worse. Take care.

[@LovingIdaho]

I found out about 3 days ago .

[@Realism092]

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

[@soloios3748]

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?

[@rpgattack2789]

Give blood. I’m 19 and just got diagnosed. Once you give blood, your body regenerates blood faster than the iron can be replaced and so the excess iron stored in the ferritin is pulled out to even the iron ultimately lowering your iron. And as for needles, if you hate them??? Tough shit😂 I hate them too

[@jhill2042]

He is right but I would see what your doctor recommends. I just found out I have it had a lot of leg and knee pain I was sweating like a pig at work at home even in 65degree room .I was irritable tired and less sharp . Well the doc sent me to Plabotemy and once it was done I felt a bit lighter but the next day I was happier more energetic my legs didn’t hurt I was blown away the difference but it’s been over a week now and I think it’s creeping back up I still feel better just seems to be creeping back up and can’t wait to go get that big ass needle again and never thought I would say that..

[@benjaminbritt7862]

You don't imperatively need to give blood in order to lower iron because there are medicines to do that also. Of course those may also come with certain side effects

[@benjaminbritt7862]

Is your Dr doing things to help with your hemochromatosis?

[@Journey2growth114]

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

[@tessawebb9469]

You need cooked cabbage.

[@andrewwalsh6177]

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?