9 tips on how to manage your iron overload disease.

9 tips on how to manage your iron overload disease…

This post will be dedicated to all of my new friends and friends I have yet to meet.  I can’t wait to get to my quote, but that’s my closing signature as you know.  So here it goes.  Let’s collect all of things we have learned and put them on one page.  I’m going to start because it’s my blog.  Onto your assignment.  If you have been diagnosed with Hereditary Hemochromatosis, you already know what’s wrong with you.  Hopefully, somewhere along the way someone explained what you should be doing, but if not, click the link above.  I am moving onto the next step.  Healing.  All of the bloggers I have recently met share a wealth of knowledge, but we are not doctors.  We are here as a support group for each other, so ask your doctor about any tips we share.  I am going to share some things that have taken me over 14 years to learn.  I don’t want you to wait that long.  If anyone has anything to add, please comment below.

  1. My joints ache.  What should I do?  Start taking a product with Glucosamine and Chondroitin like Relief.   I use the products I linked here, but you can use whatever works for you.  I personally know these have no fillers and no adverse side effects for my autoimmune disease as well.
  2. I am exhausted all the time.  What’s next?  After your ferritin has reached a good level (10 is nice), have your doctor check your vitamin D.  Seriously.  Why did it take 12 years to realize this?  I can’t be out in the sun for long.  This would make sense to check.  My favorite is this one called It’s Vital Minerals.
  3. I was taking a multi-vitamin.  What now?  Stay away from them!  Too much vitamin C is not needed as it promotes the absorption of iron and obviously we can’t take iron.  It was all Mr. Flintstones fault…if only we knew back then.  Find a vitamin with either low C or none added, and no added iron!
  4. I like raw seafood.  I heard I have to stay away.  This is true…to some degree.  Do not eat raw oysters ever due to Vibrio Vulnificus.  Thanks to one of my new blogger friends, I learned this word.  Honestly, no one ever told me why, just the get sick and die part.  Seriously.
  5. Drink more coffee.  Why?  Coffee is your life’s blood.  Ha.  Okay, so not really, but it does interfere with the absorption of iron.  Awesome.  We are Bi-winning now.
  6. Can I still drink gallons of sweet tea?  Okay, so I live in the south, and drink lots of tea.  My momma will even tell you she put it in my bottle.  No lie.  Please drink all the tea you want!  In fact, it also has magical properties if you drink the green tea version.  Would I fib?  Well, maybe not exactly magical per say, but it depends on your symptoms.  We are basing this off me.  While it does have a trace amount of ascorbic acid (vitamin C), it has selenium, which helps the thyroid.  This is important as iron has played with parts of my body I was not aware of.  That statement sounds a bit off…moving on.
  7. Prebiotics are good for your gut!!  If you are in maintenance phase and are de-ironed, add these chews to make your digestion better.  Prebiotics are fibers that support the growth of healthy probiotic bacteria in your digestive system.  Very important to heal your “gut” and to think about it as something that helps balance your whole system.
  8. Yay!  I am “normal” again.  Can I stop getting treatments?  No, you can’t.  Not unless you have a vampire living with you or you are into bloodletting with leeches.  Go every 4-6 months for life and you’ll be fine.  That is why my doctor has a house on the water and just added a library addition.  I wish I was kidding.  She could at least offer me a tour.
  9. Please get checked for diabetes, thyroid problems, heart disease, or pituitary issues should new symptoms occur.

This list will continue to grow and evolve as my readers share their knowledge.  If you found my blog through Facebook, welcome!  Please feel free to subscribe and share with your loved ones.  And now the part I like sharing best…one of my favorite quotes.

“Friendship is born at that moment when one person says to another, “What? You too? I thought I was the only one.”

~C.S. Lewis

Celtic Curse…

What is Celtic Curse?

55,000 years ago is difficult to wrap your mind around, but sometime during the Iron Age, the Celtic culture established itself throughout the British Isles.  During that time, food was scarce and diets weren’t exactly well-rounded.  So the body did what it had to do in order to survive.  It started a gene mutation to protect the people of that culture.  The diet was not rich in iron at that time, so the body fought to hold onto what little stores of iron it possessed.  The war began long before I was ever born, yet once started, it seemed there was no way back.  The mutation spread as people began to move and claim land in other parts of the world.  The Vikings took it with them to Scandinavia, and much later, England, America and Australia were also blessed.

In my search for knowledge about all things connected to this gene, the earliest website I found years ago that I still use today is the American Hemochromatosis Society.  Another particularly good one to reference is called Fighting Celtic Curse.  Stephen Cobb’s story and how he has helped raise awareness was inspiring to me at a time when I felt lost as to what could possibly happen to me next.  I was diagnosed at a young age…so I was lucky, but there was no one out there like me at the time.  The year was 1998 when everything started to come out, and you can read more about my experience by going to the very beginning of my blog.

If you are one of the “cursed”, welcome.  There is much you can change in your diet as well to continue to feel better; however, be advised.  There is no cure.  Bloodletting for life is our treatment and you must keep up with all your own tests.  I advise you to start a folder and a running record on the computer.  The year, the date, and what exactly is going on.  There might come a time when you need to reference it because there is much “brain fog”.   I know this also sounds strange, but there can be anemia as well, so if that is present, please reference this page on your diet from the Iron Overload site.  It is very important to know that you do not treat anemia with IRON ever with this gene.  Here is some information on anemia.  The date on that paper is amusing to me because it was years ago and my diet was never addressed in 16 years of phlebotomies, or having pints of my blood taken.  So I now fall into the anemic category as well.  If you are new to this, please read up and be your best advocate.  Happy St. Patrick’s Day to my friends near and far and remember this:

Celtic Curse

1998 lingers on…

The Vampire Disease

So, I can’t recall all of the diseases I was tested for at this point in my life, but enough blood was taken from me to perform several tests with really long names.  At best, I remember thinking that none of them sounded good.  Porphyria Cutanea Tarda stuck in my mind all the way home.  I had a bad feeling about it, and I knew what that meant.  After looking it up and reading about it, it struck me as odd that things I found important in my life right then would be the very things I could no longer have.  Alcohol.  Seriously…no alcohol?  You haven’t met my family.  Sunlight.  SUNLIGHT.  This has to be wrong.  Lastly, birth control.  Aww, hell no.  There is no way I have this.  I am about to get married, and go on my honeymoon.  While reading about this disease, my parents tried to console me as best they could, but we all knew I had it.  I took the 24 hour uroporphyrinogen test.  Get ready for the results.

Normal people have anywhere between 50-300 milligrams in their urine.  I had 1500 milligrams.  I also had a ferritin test (a protein synthesized by the liver and is the primary form of iron storage within cells and tissues), which showed my levels as being over 550 at the time.  Again, way above normal.  Honestly, you almost have to be a doctor to understand most of the research I have found.  Some of the most interesting lore I have found suggests a link between PCT and vampirismI can assure you that I do not sparkle when I go outside.  Anyway, I digress as usual.

At the time that I was diagnosed, there were seven different types of porphyria.  The word itself is derived from the Greek word, porphyra, meaning purple pigment.  Here is where the pieces start to fit together.  What was the most noticeable change?  My urine was dark burgundy.  Wonder if Vlad the Impaler noticed a change in his?  Now, I am not a doctor, but I have studied words.  Cutanea means skin, and tarda means late.  I am told that this disease presented itself early.  I already knew why.  It wasn’t a surprise for me when I looked back at my youth.  Ha.  I was still all of 23 years old thinking this.

As the sunlight filtered through the trees, I put my head down on the windowpane and let a tear slide down my cheek.  A butterfly danced by on his way to visit the many flowers on my parents back porch.  I was getting married outside while the sun set over the water.  I had less than 3 months to get “better”, and by better it meant no burning of the skin.

“A good laugh overcomes more difficulties and dissipates more dark clouds than any other one thing.” – Laura Ingalls Wilder