Getting by with a little help from your friends…
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 12 years to learn. I don’t want you to wait that long. If anyone has anything to add, please comment below.
- My joints ache. What should I do? Start taking a product with Glucosamine and Chondroitin like this product. I use the products I linked here, and if you are really interested in buying them, you can contact me with a valid e-mail address, or just use the link above.
- 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 right here.
- 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!
- 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.
- 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.
- 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.
- Prebiotics are good for your gut!! If you are in maintenance phase and are de-ironed, add these K-cups 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.
- 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.
- 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
Spread awesomeness:
I love that quotation. So glad I found new HH friends! Great advice. Have you ever tried vitamins without iron? I’m looking into them…not sure if I want to spend the money though.
Thank you! It is one of my favorite quotes. I have tried the other vitamins, but they don’t really taste good. If anyone out there finds a good brand, let me know.
Thanks for another positive and informative read. I enjoy them very much and I thank you for sharing. RE: vitamins, when I was first diagnosed with HH, the Nurse told me to take a multivitamin without iron and the only ones I could find were the multivitamin for Menopausal or Pregnant women. The only 2 kinds without iron. I was taking them once a day, but the more I read on the HH groups about not taking vitamins with Vit. C, I just stopped taking one all together. Not sure what’s best, but those are the only 2 without iron that I have found. Have a great day!
Thank you Kami!
Thanks for posting this! I was just diagnosed in April and it’s all so new to me.
Let me know if you have any questions!
i am newly diagnosed, and it was informative, and nicely stated. I am so glad to have found your blog site! Do you ever get crazy leg spasms and or muscle twitches and ticks? wondering if this goes along with it or could i be blessed with something else as well!
If you are newly diagnosed with HH and your ferritin is high, your levels should be 13–150 ng/mL for females. There are cases where you carry the C282y gene and can actually be anemic. I have heard this causes some leg spasms, so that might be your case. Talk to your doctor about your levels. I am really glad you checked in! I was diagnosed in 1998, so if you find my threads with my first experiences, you’ll see it was masked behind another disease. ~Aimee
I honestly thought I was alone with this,Thank God I am not!
Hi Brenda! You are not alone…in fact, more of us are getting the correct diagnosis each day:)
Love your attitude! I am a year in and it is slow to get my numbers down. I was diagnosed with ferritin of 5000. I have a ways to go so, thanks for all the info.
Thanks Carrie! If you need more info you can click the word Hereditary Hemochromatosis and see all the posts I’ve made on the subject. This disease is for life, but it doesn’t mean we are alone:)