Have Hemochromatosis. Taking Treatment. Suffer Pain In Lower Rib Cage. Pain Spreading To Spine. What To Do?

Posted on Tue, 15 Oct 2013

Question: I have hemochromatosis and have been in treatment since Sept. 2012. Phlebotomy every 2 weeks, 5 treatments then blood work to test for iron level then another 5 treatments. I am waiting for the results of my last blood test but my specialist is away until mid October. In the last two weeks I have been experiencing ongoing pain deep under my back area between the lower rib cage and the above my waist. The pain is deep and spreads from my spine around to the front of my torso. I have experienced sharp shooting pains going from my back around to my front bad enough to make me turn white in the face and having too stop everything until the sharp pain subsides. I am trying to figure out which XXXXXXX organ could be causing this as the liver is suspectible to damage with my disease. My iron count was at 1400 when diagnosed and will not come down under 500 since. Should I go to the hospital or wait till my specialist returns? There are other organs associated with this disease but I am not sure if this is the disease causing this or something else. Thank you.

Answered by Dr. Nsah Bernard (1 hour later)

Brief Answer:
If pain is from right side is probably liver

Detailed Answer:
Hello XXXXX,

Thanks for posting on XXXXXXX

If the pain is originating from the right upper quadrant just below the right rib cage, then the pain is most likely coming from liver but possibly coming too from the gall bladder or bile duct. With hemochromatosis you may experiencing a lot of arthralgia or joints pain, fatigue, abdominal pain, skin color changes, cardiac diseases etc. If your pain is from left side, then it is probably due to splenomegaly (enlarged spleen). You may also experience arthropathy of back/vertebral column which could explain the back related pain.
I strongly believe your recent symptoms are related to your hemochromatosis.
Surgical procedures such as phlebotomy are used to treat 2 important complications: end-stage liver disease and severe arthropathy. If presently your iron levels are still very high, then you might require subsequent procedures and maybe antidote-iron toxicity (deferoxamine mesylate).
You may go to the emergency room if pain is moderate to severe so they can provide you with emergency treatment before you can see your doctor when he is available.

Hope this helps and wish you the best.
Dr. Nsah

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar

Follow up: Dr. Nsah Bernard (19 hours later)

Dr. Nash: Thank you for the information and yes I found it to be helpful. One more request regarding this medical question. After the last three phlebotomies I have left the hospital toptally pain free. All symptoms seem to disappear. Though pain free I am unable to work that day as I get headaches, light headed and extreme fatigue afterwards and have no choice but to rest the rest of the day. In your opinion can the removal of blood (250 units per visit) actually produce this kind of result which only lasts a maximum of two days and then returns until the next treatment. I am asking your advice as a second opinion as my specialist has only told me the past that everyone is different. It just seems unusual that removal of blood can immediately change the pain factor. Any thoughts on this would be appreciated. XXXXXXX

Answered by Dr. Nsah Bernard (5 hours later)

Brief Answer:
It depends on individual actually

Detailed Answer:
Hello XXXXX,

While in some individuals (mostly psychological state) while after removal of blood the pain is immediately relieved, in others could take some time. But the whole aim of the procedure is to relieve you from the pain and other symptoms related to hemochromatosis. If you feel relieve immediately that should be good for you. Headaches and extreme fatigue are normal side effects of phlebotomy given that a good chunk of blood is removed from your system resulting to sudden physiologic changes which can manifest as headaches, weakness, fatigue etc.
Pain comes from excess blood and while it is being removed it is normal that you should feel relieved.

Hope this helps
Dr. Nsah

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Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar