Ehi

I am e new member here
I think you are going fine and I wish the best for you, you deserve it because I think that you are constant with your treatments


I am 39y old, I was diagnosed one year ago
I have kinda mild symptoms which include depression and reduction of sex drive, but still active in some how
I have pain in my joints , but up and down, moreover I have pain in my upper abdomen
So
I need to be checked soon for my levels
but 1 year ago I was
44% Iron Sat,
Ferritin around 800
AST, ALT medium high, not remember
High cholest,
High blood pressure
low testosterone
Etc

Can you help me, are you having phlebotomies?
how is it?

thanks

Sorry up front for the High-jack.

Vetrini, what is your current treatment schedule? Are you Phleb-ing? This isn't a wait and see type of thing. It sounds like you have some iron to get rid of. Symptoms may get worse before they get better but we're talking about adding years to your life...

I am currently doing nothing
just trying to avoid alcohol
But still I drink wine
The symptoms are not so bad
I am just afraid of not having another baby
We have a baby 15 months now and we would like to have another one
I need to take some test
I cannot tell anything right now
I just got the feeling that I am getting little bit worst
How is your pathology
do you keep it under control
Do you do phlebotomy?

DO you have any problem with test or arthritis?
Or liver?
How do you cope with the disease?
I am still i shock
Thanks a lot for your reply
Fra

Vetrini,

Please get treated now. Your ferritin is approaching serious levels which affect your liver and other organs such as your heart.

You should be on a phlebotomy schedule now. I was only 369 at diagnosis and did weekly phlebs for amonth and then bi-weekly, monthly and now I'm in maintenence and phleb based on my labs which I get done every three months. One time I went 18 months without a phleb.

You can't control this by diet alone. For diet, take calcium or milk with meat. That reduces the iron absorption from the meat. Do not drink citrus or vit C with meat. Tea with non meat products will decrease iron absorption.

Try cinnamon to reduce your cholesterol.

Get your blood pressure treated. Back in 2000, I went to a cardiologist to see if the iron affected my heart. Fortunately it hadn't. However, he could see harden of my hard muscle due to my high blood pressure and I was only running in the 140's at the time. I had just started BP meds and when I return a year later he told me that my heart was back to normal.

You do want to be around to see your child grow up, don't you?

I remember my father having difficulty with his stiff knees. He died in 1981 so I don't know if he had HH but probably did.

I believe my being treated for HH kept my arthritis to "mild" rather than get "severe".

Vetrini,
Spend some time reading some previous postings about what you should be doing personally for treatment. It sounds like you already have a genetic diagnosis. Take that to either a Hematologist or GI specialist to design a treatment schedule. You need to get the iron out of your body.
This is my maintenance schedule. I personally avoid red meat, drink coffee and black tea with every meal, take daily calcium multi vitamin without iron St. John's Wort green tea extract fish oil and Glucosamine for the joints. We also need to avoid most popular cereals because they are fortified with iron. A serving of Cheerios has something like 60% of your suggested daily intake. Many organic cereals are much better ~10%. I also have a Phlebotomy every eight weeks.
Before you make it to maintenance you have to remove the concentrated iron from your storage locations.

Bronx Preston
I read something about Hemingway possibly having it too. I too have sore knees and try to treat it with Glucosamine and avoid high impact exercise like full court B-Ball. 1998 beats my diagnosis of 2001. Stay strong...

Ehi my friend,
what is your name and age?
You are being very helpful, especially for the psychological point of view.
I come form Italy, I came here 5 years ago because I am a geneticist and work in gene therapy and human molecule genetics disease as a reseacher. I got my phD in Medical genetics.
You can imagine that , knowing the disease form the books I studied, it is a total different story.
I came to the point of denial, I did not want to think that I was so unlike and also that the destiny played a strange game, paradoxical one to me!
My dream since I was a student was to cure one day a genetic disease with the gene therapy and discover new molecule mechanism involved in the such etc....
Anyhow
when it comes to yourself , you seem to be stupid, to forget all you have studied and start becoming weak and depressed.
Your words of encouragement are helping me a lot.

Hugs from your brother in HH
moreover I have the H63D/H63D in both the alleles.
So very unlucky!
Fortunately this is the milder variant of the HFE gene involved in HH


Have a nice day
Fra

Years ago I was told by a bone&joint specialist that I had the knees of an 80 year old man. I was 40 at the time. This was long before my diagnosis of HH. I have suffered from severe joint pain for years. Knowing I went undiagnosed for years still makes me mad when it's possible that an earlier diagnosis might have slowed or arrested the degeneration of cartilage not to mention all the organs that have been effected by high iron. Oh well. I'll just do the best I can.

The best exercise for knee problems is bicycle riding. That strenghtens the thigh muscles. Can't wait to get back to it.

wat is HH?my guess is..hemochromatosis?but anyhow..i started running..20-30 min everyday ..(i'm also quite anemic..so my q is..can u bloat or gain water..cuz trying 2 lose a few lbs is not successful.lol,,,,,anyone else notice it?

HH is an abbreviation for hereditary hemochromatosis. Saves you from writing it out. :-)

Fra Ventrini--
I also have H63D, it is different than C282Y that most have. My symptoms mirrored yours almost exactly, with joint pain, low sex drive, sore painful abdomen, high ALT and AST(AST stayed high) Also had a lot of weird tingling and nerve issues. After 30 phlebs, feeling 80-90% better and bloodwork almost normal (ferretin, AST,sat still 50%) Chloesterol and BP run high in H63D.

H63D has been linked to milder course in liver, but higher neuro disease and stroke, fertility issues. It causes glutamate and aspartate overload, which causes nerve issues and oxidative state in your body. I have changed diet to be mostly gluten and dairy free (80% less) and feel better. I do the tea thing with meals and take lots of anti-oxidants like vit E CO Q-10, alpha lipoic acid, etc. Combo of phlebs, diet and vitamins and I am so much better.
Please start a course of blood letting, you will get better in a hurry. H63D is a little different course of disease, and not as well understood. stroke and neuro risk is a little scary, but with preventative measures you can lower some of the increased risk and help the liver issues you are having. good luck and hang in there. jason

I do not know if you received my previous reply
I would like to thank you for your encouragement
and please keep in touch by email
I ma 39 and married with a 15 mo son
my email is vetrini@bcm.edu

I am a geneticist expert in metabolic disease and now I am studying parkinson disease mouse models in order to approach a therapy
I would like instead study HH,
unfortunately wherever money for research go there I have to go
Good luck

Fra