Hemochromatosis, One Year Later

Today marks one year since I was diagnosed with Hemochromatosis, a blood disorder. It means that my body absorbs too much iron. Excess iron is stored in organs and can cause major complications if left untreated. So for the past year I have been going in to the Doctor to have a Phlebotomy. That's just a fancy word for blood donation! I am happy to announce my Ferritin (iron) levels have been cut in half!
Thank you all for the support!
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[@suzannehedderly1331]

I'm waiting on a genetic test now. 😣 I'm so glad you've done so well!

[@mumenrider862]

I was just diagnosed. Have C282Y markers from both parents. Have had high liver enzymes for years. My new doctor (a DO) finally chased them down and we found HH. Doctor put my on phlebs every 2 weeks (1 pint). My ferritin was so high I have a feeling they will switch to once a week. Mine was 4600 on a scale of 30 to 400. Thanks for sharing.

[@KyleClaytonGore]

So glad to hear that you found a DO that found out your diagnosis of HH. That's how I started off too, then once I got better at phlebotomies, I went once per week. I was able to keep that schedule for 5 months but it is hard. I was in a very similar boat as you.

[@suzannehedderly1331]

"Phlebs"--😂. I call them "fleas." I'm homozygous C282Y too.

[@marilyngandhi4213]

My sister has hemochromatosis and she complains that she is the only one in the family who has it. Thanks for sharing your story on youtube.

[@KyleClaytonGore]

I would be complaining too! Thank you for watching! Hope your sister is well!

[@suzannehedderly1331]

Haa! My parents have passed away so they'll never know they left me a genetic gift. 😄 I went to the cemetery and told them though. 😄

[@user-gk7mz9cy5z]

It was very good of you to provide and share this info regarding your Hemochromatosis plight. Often a calm voice can help and add reassurance to others with similar concerns. You have probably done more good for others than you realise.

[@KyleClaytonGore]

Thank you very much! That is very kind of you to say and I appreciate it.

[@Mbdnieto]

My cousin died from a liver failure caused by this disease. I'm searching for more information because I want to understand why this happened. One day her liver increased its size and stopped working. Suddenly she was fighting for her life and needed a liver transplant. Sadly she couldn't make it. I'm glad you are able to follow an adecuate treatment.

[@KyleClaytonGore]

I am so sorry for your loss. That is hard. The liver is where the excess iron is primarily stored, among other organs and the joints. As the build up gets larger, it causes cirrhosis of the liver and permanent damage. I am not sure if that is what happened but is what I have read says can happen. Hopefully that helps a little bit on your research.

[@BenRoberts12]

www.toomuchiron.ca/video/

[@suzannehedderly1331]

I am so sorry! How sad for her. I'm having an MRI in 2 days to see if I have liver damage. I had no period after I was about 31 so I've been storing iron for a good while.

[@jeanniestarks6495]

great job, Kyle! and I'm so glad to have been part of your year long journey--just think, pretty soon you'll be in maintenance and an old pro like me :)

[@KyleClaytonGore]

+jeannie starks Thank you! I'm so glad to have connected with you too! I'm looking forward to maintenance mode. I hope the port treats you well! :)

[@db2631]

There is a history of this in my family. I got tested at 42 and my ferritin was 416. I have been going and donating blood every time I can. You speak of maintainance mode, how many times do you have to go a year? Thanks

[@KyleClaytonGore]

Every three or four months, or so. Depends on your absorption, etc.

[@AngelCelis69]

Thank you for your videos.

[@KyleClaytonGore]

Thank you for watching!!

[@TECHMYBOX]

I found out 2 days ago I have this aswell have not started my treatment yet at stage you was scared and that

[@KyleClaytonGore]

Check out my other videos too. I have one about how to prepare for treatments. Let me know if you have any questions. Glad to hear you’re going to start getting your iron down!

[@pureone26]

I have HH, but ferritin is 'in range' (although range should be 20-50). My saturation is the problem/ high. Found out my prior B12 and copper/ Cp deficiency may have contributed also.

[@KyleClaytonGore]

Glad your ferritin is in range! It's such a tricky balance with everything. Thanks for watching and sharing your story!

[@andrewbatten459]

Hi there. Just curious what your blood levels were when you found out

[@KyleClaytonGore]

I was a 4,200 in my Ferratin

[@FirstnameLastname-gy4bz]

My ferritin levels are around 450-550 Should I donate blood? Is my level considered enough for the condition? My doctor says it’s about enough to be considered haemochromatosis. But I worry whether I should wait for it to go higher?

[@KyleClaytonGore]

That’s high according to my Doctor but I have a diagnosis. An Oncologist would know more and may be a good next step. Donating blood will keep your levels down and help the community too.

[@suzannehedderly1331]

I have been told in the US you can't donate blood if you have HH.

[@andyb2494]

Hello may I ask what your ferritin levels were and where is it now. And what were your symptoms with high ferritin. Thanks.

[@KyleClaytonGore]

I started at 4,200 and I'm at 425. Check out my latest video, I talk all about my symptoms: kzbin.info/www/bejne/o4XZeHdtopl8Y7s