Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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ColemanS 08/15/2009

I have been recently diagnosed via the genetic test for HH. My journey began as a suspected skin condition (of course I had the fatigue for several months, but attiributed that to the fact that I have a toddler that wears me out!). Six months ago, I started developing painful blisters on my hands that would not heal. I saw a dermatologist in July and he did a skin biopsy and ordered some blood tests. He diagnosed me with porphyria cutanea tarda (PCT). I was negative for Hepatitis C. Because my ferritin levels were high (I do not know how high), he advised me to see a hepatologist. The hepatologist ordered the test for HH and several other tests. The doctor prescribed Chloroquine for the PCT (which made me so sick I ended up in the emergency room after just one dose). Long story short, my insurance does not cover the hepatologist I was referred to see. Instead, I will be seeing a hematologist on August 24 and hope to start the phlebotomies ASAP. The hepatologist advised me that I needed to have a liver biopsy, but since my insurance won't cover it if he orders it, I will need to talk to the hemotogist about that. My question is, has anyone here had PCT along with HH? Do the phlebotomies make the symptoms go away? HH symptoms are bad enough to deal with, but PCT makes you feel like a vampire (avoid sunlight, etc.). Please help!

GidgetD 08/15/2009

Yes the phlebotomies did make most of the symptoms go away, After a year of weekly phlebs I was a new person. It is hard to even put into words how much better I felt.

ColemanS 08/15/2009

Thanks for your reply GidgetD. There are times I hurt so much just trying to take care of my two year old son because my hands cut with the slightest trauma. It is nice to know a normal life is possible :)

bronxpreston 08/16/2009

Get your lab results so you know where you are in treatment. It's my understanding that a liver biopsy is not necessary if the serum ferritin is below 1000. The point of the liver biopsy is to see if there is liver damage. The blood work should determine if your iron levels are high. I'm surprised the hematalogist didn't suggest a MRI instead of the liver biopsy. It's less invasive.
I prefer going to a hematologist to be pheblotomize because the nurses there are used to all types of veins. I have very bad veins and they will use smaller needles on me.
If I might ask, where do you live that your insurance didn't allow you to see a hepatologist?

GageL 08/16/2009

I also go to a hematologist for the phlebotomies, just better all round, they know the viens, etc. You should start feeling better when the phbleebs are started. Sorry to hear about your complication with the skin disease. I am not aware of that as a condition connected with HH but the book on HH has not been written that I am aware of. A liver biopsy sounds kind of old school medicine to me, do your research. Find a doctor that knows a lot about HH if possible. Most dont.
Go directly to ironoverload.com and read their information on HH.

I am always very surprised to read on this forum that so many people are told by their doctors that they have high ferritin levels but are unaware of the numbers. Best advice? Get involved with your condition, follow your blood work results, take control of your treatments, do not trust any doctor 100%, always do internet research, see what other countries besides the US are doing with HH. Keep us informed. GageL

ColemanS 08/17/2009

I live in Rock Hill, SC. There are no hepatologists in Rock Hill, but there are some in Charlotte, NC. My insurance carrier, BC/BS claimed the hepatologist in Charlotte was not one of their providers. However, given that he was so quick to order a liver biopsy (which I am now discussing NOT having done with my Hematologist or at least exploring other options like an MRI), I am really not upset that I won't be seeing him anymore. I had an ultrasound on my liver that showed it was "unremarkable" and a CT scan when I was admitted to the E/R. Both show my liver looks normal. Thanks for the advice on getting my lab results. I will keep you all updated when I receive them. Thank you so much for all of your help as I begin this process.

GidgetD 08/17/2009

I had ferritin over 2400 and high ast and alt, we did a liver ultasound after my ferritin went below 500 and did not see any damage, A liver biopsy seems excessive, but what were your Ast and Alt numbers.

bronxpreston 08/17/2009

My serum ferritin was only 369 on diagnosis and the MRI showed iron deposits on my liver. I had a liver biopsy because the doctor I was seeing then (1998) claimed the insurance company would not pay for HH treatment unless the liver biopsy was done. My mistake was that I didn't contact the insurance company to confirm this. Fortunately I had no complications from it.

ColemanS 09/04/2009

Since my last post, I am happy to report that I have had two phlebotomies and my skin is looking a little better every day. Although I admit that I didn't write it down, I did discover today that my ferritin is only 160 with 66% saturation (I hope I am stating this correctly). The hematologist that I am seeing does not think a liver biopsy is needed and now, knowing my ferritin levels are well under 1000, I think it would have been an unnecessary procedure. I am having treatments every two weeks.

bronxpreston 09/04/2009

Glad to hear you're doing so well.

tuistone 09/23/2009

I just returned from the Mainland where I spent time with my sister. She has been suffering terribly for nearly a decade from PCT. She has not been as active in her phleebs in the past, but is now keeping her ferritin below 30. It has been my experience that when 'traditional' medicine is ineffective, folks reach out for other possibilities. Sue, my sister, has a gluten sensitivity and is trying to be gluten free. She is noticing some improvement, but it hasn't been startling. I'll keep you posted as to her success.
Also, her son, who is just a carrier is experiencing PCT to a lesser degree. That raises more questions as to carriers.
Best of luck.

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