Hi Kascali
HH is a strange condition that we suffer from, as no 2 people have the same symptoms.
I have heard some people say that bread affects them, but I don't think it affects me.
I suffered from many symptoms that the doctors could not find the cause of before I was finally diagnosed with HH after a long chest infection.
I was told that I had Asthma, and IBS, but since diagnosis and de-ironing these have both disappeared although I still have breathing issues.
You should not worry about eating vegetables as the iron in them is not easily absorbed and you need the other nutrients.
Don't take vitamin C supplements as these can increase your iron absorption, avoid regular consumption of red meats and anything that says it is fortified with iron like breads and cereals.
Raw shellfish and sushi is a big no no for people with HH as these can contain a potentially deadly bacteria to HH sufferers that could lead to death.
My pains have eased with the plebs and the de-ironing, I have classic HH pains in my finger joints, toes and hips, and these seem to get worse as I approach my scheduled maintenance phlebotomy.
I suffered from pains in the abdomen and these are a bit better since the de-ironing.
The worst thing for me is the fatigue, I sometimes wake up feeling like I have not been to bed and also am so tired in the day.
I also think that I was suffering from the classic HH "Brain Fog", at one point I though that I was going mad or getting dementia, this has nearly gone with the de-ironing thank goodness.
Trying to make other people understand can be very difficult as well
they either don't believe you or think that you are making it up.

Try to list your symptoms and what you have been to the doctor with over the last few years, I did and it was surprising how many you can attribute to HH. However as my liver specialist told me don't attribute everything to HH and leave it always get it checked out as it may be something else.
However people with HH are known to get more infections and to suffer more with them.

Take care I must go its getting late here its 23:10.
Regards

Steve

Hey Steve, I just wanted to say that was a great post!! I agree, my doctors told me not to worry about what I ate. They said "you will need a phelb anyways". It makes a huge difference, which I learned from this site. I don't worry about veggies, but red meat;(. It makes a difference for me. Exercise is also key, but sometimes you just don't have the energy, fight it whenever possible:)

Hi Stephanie
Thanks for the comments.

I agree with the exercise thing being good for us, I have just got back from 2 weeks in Cuba, and I was determined to walk the beach twice a day and swim as often, however I had some sort of chesty type of infection when I went on holiday and was on antibiotics the result was that I felt so tired that we only walked the beach twice and I only swam about 6 times as I was so tired, enjoyed the sun though!!!

Take care

Steve

I eat whatever I want but in saying that most of what I eat I grow myself, hunt myself, or trade with friends who raise chickens, both for meat and eggs. I also am on a strict phlebotomy schedule to maintain my ferritin under 50, I do not let is rise and then take action. I was diagnosed 10 years ago and live a normal happy life, but I work hard everyday physically and I think that helps also.

I have definitely noticed that no 2 people are the same when it comes to how their bodies store the iron!

My ferritin was 449, iron was 153, and saturation was 57% when I was diagnosed with HH. After my 1st phleb, it raised to 524. After about 4 or 5 phlebs (with my last one 12/4/14) it dropped to 78 and has continued to drop on its own since. The most recent test showed my ferritin at 29 and my iron at 39.

The Dr asked me to start eating more iron fortified foods (cautiously)

I'm stumped as to how my levels are dropping on its own.

For more details about what i'm about to write here, see my brain fog let's research post!

Doctors seldom focus on the Transferring Saturation issue (or the rise in saturation immediately after every phlebotomy.)
iron must be safely transported by transferrin when travelling through blood stream, or its an absolute free radical poison, causing cellular damage everywhere; Extreme fatigue comes with this, plus for me nausea and a general "not well" feeling even though i have no liver or organ damage (originally caught my HCC at 650 Ferritin level).
The free radical episodes also can cause extreme brain fog. There's debate over whether iron crosses the brain barrier, but i've tested myself over & over and whenever my saturation is in alert status (meaning there's free radical iron unbound in my bloodstream) my brain fog is most intense AND my central sleep apnea gets worse (central apnea is the rare type where the brain stops telling your lungs to breathe during REM sleep especially).

Once your ferritin is truly low (for me, that means below 40-50), my fasting saturation finally drops--and as Stephen has also observed, my brain fog significantly clears (and my central apnea tends to get better). This must be because the body is trying to conserve the little iron thats left in storage and doesn't release it into your blood stream as readily. it truly should be maintained LOW for best brain and body health. Though few hemotologists are sensitive to this issue, there are those who wlll maintain below 50.
Also watch your diet--it DOES matter keeping diet low in iron, because high iron meals will send you into transferrin saturation episodes! Stored iron is NOT the only issue!
And Vitamin C not only causes more iron to be absorbed from food, it also releases iron from storage (So large amounts of Vit C also can send you into T Saturation Episodes, and MSM also can by releasing iron from storage). These issues are very important and DO explain some of your symptoms!! Best Wishes :-)