How Often Do I Have to Put Myself Through That?
The most commonly expressed concern is about the frequency with which further treatment should be carried out. Well, there is comfort to be derived from the fact that, once the desired level has been achieved, three to four phlebotomies a year should suffice. But it cannot be stressed too strongly that a) to reduce the stored iron to that extent, may take several years and b) it should not be left to the physician to take the first steps in initiating the follow-up therapy. This is a critical stage and it is in the interest of every hemochromatotic to ensure that regular tests are carried out. Naturally there are those for whom, at the time of diagnosis, it was already too late, but I prefer to quote Bassett, Halliday, and Powell: “The patient can be reassured that the prognosis is excellent, provided that iron re-accumulation does not occur over the long period of follow-up.”
I can only repeat that no matter how depressed someone might be at the prospect of having to regard this as part of the rest of his or her life, the first phlebotomy is the first step on the road to hope! All hemochromatotics who undergo this form of therapy owe their lives to Professor C.A. Finch of Seattle, who first instituted therapeutic phlebotomy. One could go back further: to Bothwell of South Africa, Edwards and Charlton and Powell of Australia, and Canada’s own Valberg; to Jacobs and Bassett and Halliday and Cook; and on... and on... back to those who have been doing research and writing about it since 1865. If the iron is not removed, the estimated five-year survival rate after diagnosis is 18%, and the ten-year survival rate, 6%.
Article comments
1 - pat dwyer
I knew my grandmother had died from heart disease due to too much iron (a few weeks after getting the diagnosis) so I always told my doctors over the years of this even though I didn't yet know the name of the condition. Finally, I got a high iron blood result and started treatment at 58 years old. It's been a year now and I'm amazed that my cholesterol went from always being around 230 down to 170 in my last test.
2 - Melinda Terblanche
Can anyone please tell me why you say it is necessary to fast before having blood tests for HH? Our doctor has never insisted on this.
3 - Jono
It is NOT "neccessary" to fast to have the test on a regular basis (dependng on what test yor referring to and what stage of treatment you're in); fasting may eleviate the odd errant high serum iron reading - particularly if you've had a nice juicy steak 8-12 hours prior.
4 - Marie Warder
The previous comment posted by 'Jono' is quite correct, although I know of physicians who require
this more frequently - especially if the patient has allowed too long a time to elapse between phlebotomies. I think what has confused you is this reference in a previous article:
* "Few are told that it is necessary to FAST before the tests are done. That it is essential for physicians to stipulate this was shown in the Utah study some years ago. In the more recent study carried out to determine iron overload in an “outpatient” population in British Columbia (S. Krikler and JC Heathcote: BC Biomedical Laboratories)" an abstract of which was presented at the Bioiron99 World Congress on Iron metabolism in Sorrento, Italy May 1999 " of the 108 subjects who had an initial elevation in saturation, 29 normalized on a fasting repeat."
5 - Jonathan Thompson
I have several family members with this disorder, and I feel sure that Ihave some of the symptoms, but all my blood tests show my hemoglobin to be normal. Can the lab possibly be misinterpreting the results?
6 - Marie Warder
Unfortunately some family doctors still request the same test for iron overload as they do for iron deficiency - mistakenly expecting that, in the case of hemochromatosis, hemoglobin levels would be elevated - whereas, in HH, they are normal. I advise you to insist on a COMPLETE iron profile. In other words, tests for serum iron concentration, percentage saturation of transferrin, and also serum ferritin concentration should be performed.
7 - Marie
Jonathan, it is possible for your hemoglobin to be normal while your iron levels are not. A test for ferrtin is part of an accurate diagnosis, not hemoglobin.
8 - lonnie s
I am 53 year old female, my daughter was dianosted with hemochromatosis. I was told to get tested...but, new to this I put it off. Well, after fighting fatique (for most of my life) and now bad hip pain and hand pain, losing hair. I had to insist on having my doctor check my iron levels, my binding was 222, tibc 32, serum 190, saturation 86, and ferritin 478, hemoglobin was normal. my colesterol was 256. I got a letter from my doctor saying that my test were normal, iron a little high and to stop taking iron supplements(I am not taking supplement) are my test normal????
9 - Bob Rogers
Lonnie s
Your transferrin saturation is very high at 86. Your ferritin is elevated (above normal). Since you daughter has been diagnosed with hemochromatosis (HHC) the accepted protocol a doctor should follow is to have "all first relatives" genetically tested for the HFE gene mutation. If your doctor will not do this test, please contact me at my office.
Bob Rogers
Executive Director
Canadian Hemochromatosis Society
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