Blood doesn’t lie…
Not intentionally anyway, but it might mislead you. That is what I am writing about tonight. I found a nice little article about the “Celtic Curse”. Whenever I say that, I imagine music in the background…the kind that leads to “certain death”. Some of you might get that reference. Anyway, occasionally I have people e-mail me and ask me about some things the doctors recommend for their recent diagnosis of hereditary hemochromatosis. Not because I have my degree in that field mind you, but because they know that something doesn’t sound quite right about what their doctor said so they ask someone who has been living with it for a long time. I always say the same thing. Listen to your doctor, but seek out a specialist in this field if there is one near you. Never stop researching or giving up on the plans you have for yourself. This is just one speed bump in the road of life.
I was delighted to find someone else who was doing more research along the same lines of my thinking. Neither one of us has attended medical school mind you, but we are smart enough to see clear patterns and know what our bodies are telling us. As I have said all along, keep a journal of your symptoms if you can so that you can provide your doctors with as much information as possible. Soooo, I’m going to go out on a limb here, but I wonder how many HH sufferers have stomach pain as well as joint pain? The c282y gene mutation could be the underlying cause of many issues we have yet to know about. The bottom line is, if you think you have made a connection between something you are eating, like gluten, or something you are not getting enough of, like vitamin D, go with your instinct to help fix what you suspect is wrong. I will leave you with this fun Blood Quiz, that oddly enough, I did very well on. So well I surprised myself. Ha. Paging Dr. House.
“Healing is a matter of time, but it is sometimes also a matter of opportunity.” ~Hippocrates
Good ole’ Hippo Crates.
Spread awesomeness:
I have HH, been through hell, still looking for answers. I’ve been de-ironed but feel terrible…and haven’t made any connections like gluten. Is there a remedy or help for the fatigue of this disorder? My doctors say the fatigue is not because of the HH…but they fail to have any other suggestions after many blood tests. What can you suggest??
I have lots of suggestions, but I need a few answers first. What is your current ferritin level and how often do you get your blood checked? Are you still getting phlebotomies or are you on the maintenance phase? In the meantime, check out this post I did a while back to help others with HH: https://theburnedhand.com/2011/05/04/getting-by/ Also, click on the word hereditary hemochromatosis and read my posts from the oldest to newest to see if anything helps you there:) Once I know your levels, I can offer better suggestions.
I missed a few of your posts on HH…they are very helpful…I’ll review again today. Thanks! My ferritin is now 24, but it was under 10 for most of 2011. I thought that was why I felt so bad. My iron is now 163, was around 6-70-31 in 2011. I was having phlebotomies every 12 weeks…now, I changed doctors, and I’ll probably have a phleb in May or June which would be a 20 week spread.
If you haven’t already had your vitamin D level checked, I would also start there. It makes sense that we really aren’t supposed to be in the sunlight much, so doctors should check that since low levels cause fatigue. I would also get plenty of vitamin B as well. Also, I am concerned that any doctor would tell you that your fatigue is NOT because of our disease; however, that being said, if it is a general doctor and not a specialist like a hematologist, perhaps they really don’t know the latest research. Good luck and always get a second opinion:)
I wrote my post before seeing your update….sorry for any confusion.
I read everything today…all of your posts re HH and everything at Daily Strength’s support group. I don’t see any real answers to the fatigue issue. I’ll take your advice re the glucosamine and I already take D3. But, today I felt awful. Can’t stand it.
In each post, if the word is a different color, I have linked it to my research. In the post I pasted above, my number 2 item mentions “I am exhausted all the time. What’s next?” It is normal for us to feel this way, and unfortunately, there is no cure. However, that being said, it sounds like you are newly diagnosed. Here is another link to read up on and I like this one because it spells out the weakness and lethargy, as well as the maintenance phase. Until you are in the “maintenance” phase for a while, you won’t feel “normal” again. Normal for us, is not going to be the same as for other people. http://www.uptodate.com/contents/patient-information-hemochromatosis-hereditary-iron-overload-beyond-the-basics
I’ll have my Vit D level checked…I never connected Vit D with energy. Also, my B12 levels are on the high side, so I stopped taking a B complex….so, I’ll get back on that…w/o the B12.
I’m on maintenance, was diagnosed 4/2008…not new to this…but the fatigue/exhaustion has been worse for the last 6 mos to a year. Recently, simple chores are exhausting, so, yes I follow the spoon method. Also, I try to keep up exercising…hard to figure out when it’ll help me feel better or exhaust me.
My internist and hematologist don’t attribute fatigue to this disorder…they think it’s something else, but have no other suggestions, since blood work only showed a slightly slow thyroid. I’m on 25 mcg of synthroid….so, maybe that needs adjusting. I’m only on that since December.
Thanks for your help.