What is the relation between ferratin levels and treatment for hereditary hemochromatosis?
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Good morning: I have hereditary hemochromotosis with iron levels of 300, ferratin levels of 310 and a 75% iron saturation level, which I believe explains the fatigue I have been experiencing. However, my hematologist says that therapeutic phlebotomy should not be done until ferratin levels reach 1,000. I don't understand the downside of getting my levels down sooner rather than later and especially when a level of 1000 has a higher incidence of organ damage. Am I mistaken that the sooner I get my levels down, the better. And what advantages are there to waiting, considering the treatment is so simple? My AST and ALT levels are each around 98, so there is already evidence of compromise of the liver.
Posted Sun, 9 Feb 2014 in Blood Disorders
Answered by Dr. Chobufo Ditah 1 hour later
Brief Answer: I think you should be start treatment Detailed Answer: Hi and thank you so much for trusting us with your health query. I am so sorry to hear about this diagnosis of hemochromatosis and the difficulties getting treatment started. Considering all the information you have provided, You deserve to start treatment for this condition in accordance with the American association for the study of liver diseases: WWW.WWWW.WW as can be seen on page 8 of this PDF document. The rising levels of your liver enzymes alongside the symptoms makes it even more imperative for you to get something going to help prevent further aggravation. In all, talk to your doctor. You may use the provided guidelines to make your case as well as asking him to justify why he thinks you are not eligible to the start treatment. You are totally right and should get treatment going unless there are some reasons known to your doctor alone. Talk to him. I hope you are currently seeing a gastroenterologist and hepatologist for this. If not, please get one on board for this. I hope you find this helpful. Thank you so much for using our services and please feel free to for more information or clarifications if need be. I wish you the best of health. Dr. Ditah, MD.
Follow-up: What is the relation between ferratin levels and treatment for hereditary hemochromatosis? 15 minutes later
Thank you for your thorough response Dr. Ditah and especially the link you provided to the AASLD document. I am printing it out and will take it with me to my appointment later today. When I asked my doctor why she did not advise treatment, she said my levels were too low, and she thought my insurance would not authorize treatment, but that is my problem, not one that should interfere with her recommendations. She also said that phlebotomy involves getting 'stuck' (which is no big deal to me) and that I might feel tired afterwards, so I didn't get an answer that satisfied my concerns. She told me to go to a blood bank and just donate blood, and they would use the blood in their bank, but I had to tell her that despite the Hemochromatosis Organization declaring HH blood as safe, very few centers actually did use the blood for donations, which surprised her. I would have two choices, either to not be transparent about having HH (which I wouldn't do) or pay for phlebotomies at the blood bank, which is not ideal as my care would be disconnected from my medical records at the hospital. My regular hemotologist/oncologist was promoted to another position, so this Doctor is very young and brand new, and I am wondering if she is just not completely aware of the guidelines, so your reference material is very important. If I do not get satisfactory answers, I will seek a second opinion at Mayo where I see the very capable and caring Dr. XXXXXXX Foran for my MGUS. Thank you!
Answered by Dr. Chobufo Ditah 39 minutes later
Brief Answer: Thanks Detailed Answer: Thank you so much for following up with me. I find this information even further disturbing. Your doctor should focus on your treatment first before the ability to pay or not pay for them. Even going as much as asking you to donate without disclosing your status is not also a very good idea in my honest opinion. I hope with the recent AASLD guidelines, she would be able to take a closer look at her plan and make sensible recommendations according to the present experts treatment guidelines. I trust Mayo when it comes to health care services. Their GI department has been the first in the country for over 25years and counting. If you have the chance to get treatment there, then I will strongly recommend it. My brother works there and for sure they delivery evidence based quality care. Let me know what the outcome of your visit today is. Dr. Ditah, MD.
Follow-up: What is the relation between ferratin levels and treatment for hereditary hemochromatosis? 4 hours later
Dr. Ditah: Thank you for your advice. I took the article that you forwarded to my GP's office today and he agreed that the hematologist was not following recommended practices and treatments and referred me to a different doctor! He also sent me to a hepatologist to review my elevated ALT/AST levels, as well as the extensive heterogeneity of my bone marrow as it may or may not relate to MGUS or HH. So you provided an instrumental piece of the puzzle for me today, my gratitude! XXXX
Answered by Dr. Chobufo Ditah 20 minutes later
Brief Answer: Am happy for you! Detailed Answer: Hi XXXXXXX Thank you so much for updating me after your doctor's visit. I am humbled to know I was of help to you today. I pray and hope that the new doctors offer quality and up to date evidenced based practices for your health problems. Feel free to contact me whenever there is need and I would gladly address them. Have a great evening! Dr. Ditah, MD.
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