Volume I, Number 3
Guest Blog By Lynn Philip Hodgson
Mr. X died of natural causes at age seventy-eight; sounds reasonable, that’s basically the life expectancy of a man living in Canada today. But was it natural causes? After all, he had never been sick a day of his life. Over time, he began to experience strange symptoms; strange because it wasn’t like him to be so tired all of the time. He suffered with joint pain due to arthritis, but everybody his age has some type of arthritis, don’t they? He had mood swings, memory confusion at times, loss of libido, the odd bouts of abdominal pain and a strange bronzing of the skin; the latter he didn’t mind as it gave him an all year round tan. Nothing at all to be concerned about, he thought.
Mr. X had worked hard all of his life and was enjoying retirement, golfing in the summertime, heading south in the winter; life was grand until that fateful day when his heart became erratic and caused his death. Heart failure they said, as they moved his lifeless body onto a gurney for the short distance to the elevator, which would take his remains down to the morgue. A trip taken so many times before him by people with similar conditions. But was it heart failure, or some other hidden set of circumstances that could have been avoided?
My story started with a routine check up; the doctor suggested a series of blood tests based on symptoms that I had described to her. The blood work came back abnormal and she had recommended a treatment for me. After a follow-up appointment a number of months later, a further blood test was done with similar results; there had been no change. The doctor was puzzled, what could be causing these results?
About a month later I received a phone call from the doctor’s nurse, please come in right away for a further test; did the doctor know what was causing my symptoms or did she simply have a hunch? Several weeks after the test, I was once again summoned to the doctor’s office. The results were in; I had Hereditary Hemochromatosis. What was that I asked? To make a long story short, and to put it in laymen’s terms, I was suffering from iron overload. It doesn’t sound ominous, certainly nothing to worry about, I mean, you can’t die from it; or can you?
In 1996, a California doctor discovered through DNA testing, a defect in C282Y and H63D on the HFE gene. This is Hemochromatosis, an iron overload, which can cause disease in vital organs, as it accumulates in the organs, joints, and tissue of the body. In fact, 1-300 Canadians are walking around with the disease and in most cases they are totally oblivious of having it. Even more shocking, 1in 8 people from a small section of the U.K., specifically, approximately 100 miles on either side of the Scottish/English border, have the disease. For this reason, both my wife and I have Hereditary Hemochromatosis. If you are tested positive for HHC, your family should be tested, as there is a likely chance that some of them will be positive as well. In my case, just one of my daughters has been tested and she is positive.
The facts are hidden in simple numbers; my Ferritin count (iron) was 2,769; what should it be I asked? It should be below 300, she replied. The normal Ferritin count for a woman is below 200 ng/ml and 300 ng/ml for men. Damage to major organs can occur in people with counts above 1,000 ng/ml. I was sitting at 2,769; what can be done about it I asked? The answer, “phlebotomies,” she replied.
A phlebotomy is the technical name for bloodletting or the purging of blood. The treatment will be determined by your doctor but could range from once a week to once per month. In my case, my age was a factor so I was put on a once a month regiment for the first year, with the procedure being done at our local hospital. After a year, my numbers had come down, but not enough. In fact, they started going back up! My schedule was switched to every three weeks and that resulted in an immediate improvement. The following is my actual chart numbers. With what you now know about HHC, scary isn’t it?
Date Count Range
April 26, 2006 2,769 Abnormal
Sept. 13, 2006 1,804 Abnormal
Nov. 21, 2006 1,127 Abnormal
Jan. 24, 2007 902 Abnormal
Mar. 31, 2007 982 Abnormal
May 19, 2007 748 Abnormal
Jun. 23, 2007 952 Abnormal
Oct. 13, 2007 585 Abnormal
Dec. 7, 2007 229 Normal
Feb. 23, 2008 90 Normal
Apr. 4, 2008 79 Normal
It’s ironic that the last test showing a normal result, April 4th, was exactly sixteen years after the date of my father’s death; a death that I believe was a result of a lifetime with the ‘Silent Death’ disease.
The above chart is based on test results of follow-up blood work, which should be done regularly in order for the doctor to properly analyze your progress, to determine whether or not you need to decrease or increase the number of phlebotomies.
In conclusion, I am certain that HHC took the life of both my father and mother, prematurely. I will need to have regular phlebotomies for the rest of my life. Others in my family, including all grandchildren, will have to be tested. But thanks to this particular doctor who had the foresight to look further, I’m keeping my fingers crossed that she caught it in time and the ‘Silent Death’ will not strike me.
For more info on HHC see: www.toomuchiron.ca
June 7, 2008
Hi,
I’m very tired and have shown high iron in my blood. I just had my second test done and I expect to be told that it is iron overload my next doctors appointment.
I was told I had hypothyroidism a few years back but the treatment did not get rid of the tireness.
I found out that I had moderate sleep apnea. The treatment helped but I never regained my energy from previous years.
I thought it was middle age. Recently I found myself more tired, not having the energy to get out of bed but of course we don’t have a choice.
I am not sleepy but my brain and body are so tired.
Can you tell me when you started to regain your energy again? Did you regain your energy again?
Thank you!
BakerStevens
June 10, 2008
Actually, I have not regained my energy at all. Two years of regular phlebotomies has left me with very little energy. In my case, I also have a disease called Sarcoidosis, which almost took my life when I was thirty-five. At that time I was given five years to live and here I am still alive at sixty-two. What I don’t know is how much damaged was done to my vital organs over sixty-two years on top of the Sarcoidosis. Right now, every year is a bonus and I was able to see my daughters marry and now enjoy my four grandchildren.
I hope this helps,
LPH
August 24, 2008
thank you LPH and Baker Stevens…. part and parcel with my 61 yr. that has just been given a pos test for Hemochromotosis. The comment “brain and body”, I am fully aware of the lethargy and the physical let down on a time line that has escalated ten fold over the last decades. The loss,again very gradually,of libido. Two ways to gain divorce. My main trip wire, that set off bells, was what a Cardiologist told me after re establishing electrically a tachycardia at emergency. She said I should ask my GP to test for HHC because of patches of a brown colour on my forhead and a pockeling of smaller around my hair line, something I had asked my GP and other doctors about for the last 10-15 yrs. I was told ,without exception, that the discolourations were from sun damage, and to use sun bloc. Its been 3 months since this pandoras box was opened and will be another two weeks until my first phlebotomy, and I`m using this time to come to terms with the needs to do. The most upsetting part is coming to terms with my brains idiosyncracys. The tardiness, the drawing back of completing just about anything that takes anything more than an hour or two. Just getting to a job accross town is not really a problem, the vehicles doing it for you, but starting the job, that takes analysis has become something that can literally find me stalling,procrastinating, and if finished walking away without billing the customer… something totally alien to my earlier years. This is the most difficult part of my life, making ends meet. It seems almost normal and easy to ignore everyday activities, particularly the most rewarding ones. I am dearly hoping that diet, phlebotomys, and knowledge , will allow me to regain a good health of mind and body..Anyone with any support and info is most appreciated… thank you all Pat Venton.
December 4, 2008
I consider myself lucky. I was diagnosed at age 49 with a ferratin level of 1083, confirmed by genetic testing. I had experienced some arthritis, thought I was getting old. My intestinal discomforts and generally feeling poorly I attributed to work related stress. My brown stained ankles seemed to be related to scarring from my many bumps and bruises from years of playing hockey. In hindsight I was also becoming a bit of a crab, a bit short tempered perhaps but again I put that down to stress. Now after de-ironing and maintenance for 3 years I feel much better and have a better outlook on life. My goal is to keep spreading the word about HH to ensure those who might be suffering from it at least become aware of it and hopefully get tested. Each of us is different and HH will affect all of us in different ways. The best thing to do in my opinion is try to keep a positive attitude and enjoy life to the fullest degree possible, while maintaining an awareness for risks associated with HH.
January 8, 2009
Well, read my long epic. Today I got the news that after 8 weekly phlebotomies my SF had only dropped from 1480 to 1461. That is crushingly disappointing, let me tell you. However, I’m down from a high of 2360. But I have cirrhosis, libido loss, full-on insulin dependent diabetes.
Having said that, reading the iron levels vs. time I’m somewhat heartened to know that, sooner or later, it’ll go down. 2750? Wow, I guess I don’t feel so bad. You must have a steel-lined pancreas - I’m astounded you don’t have diabetes.
Oh, yeah, and, guess what? I disovered my HH MY SELF!!!!!!!!
You can read the story at http://www.78thfrasers.us/my_story.htm
This blog site is great! I’ll repost this as a top level posting. Tell one, tell all! Thanks. Jeff
January 12, 2009
I am 29 years old and I just found out that I have HH. My Ferritin level is 3,000. I have completed a liver biopsy, an ultrasound, an echocardiogram, and 3 phlebotomies in the past 6-8 weeks. I have bouts of sleepiness and sometimes they are overwhelming. My joints hurt. I get the shakes if I don’t eat or if I eat a lot of sugar. I guess I can’t complain though… Thank God the doctors found it when they did. Good luck sir, good luck to all of us.
January 16, 2009
Après deux années d’examens de toutes sortes, un gastroentérologue m’a fait passer un test sanguin qui a permis de diagnostiquer l’hémochromatose. J’ai depuis juin 2007, une phlébotomie a tous les mois. Mes problèmes d’estomac ainsi que mes troubles intestinaux ont pratiquement disparues mais je demeure avec des problèmes d’arthrose et de libido qui semblent s’intensifier au fur et a mesure que mon taux de ferritine descend. A 51 ans, j’ai eu la chance d’alerter mes frères qui eux aussi ont été diagnostiqué positivement. Je leur ai ainsi épargné plusieurs années d’examanes.
February 6, 2009
Update. And my, what an update.
Since my last “response” to this blog, here are my results:
Jan 7th: 1461
Jan 14th: 1409
Jan 21st: 1390
Jan 28th: 1253
Feb. 4th: 960!
Sheesh! Well I finally dropped below 1000. Little did I know how fast I could do it. 300 points in one week must be some kind of record. On the 7th I immediately increased the donation to “fill the bag”, going from 250mL to 450 or somewhat highter for four weeks straight. The results were dramatic. however I paid the price with mild anemia, so I’ll take a breather for a few weeks, which now I can sort of afford. I will test next week for my lighter donation last week (the blood test is immediately BEFORE the donation) so we’ll see. If you’re driven, you do it. I also had to do a two-state test (donaton vs. rates of decrease of HB, HCT, and of course SF). More fine tuning to optimize the rate will clearly be in the plans in the next few weeks.
I’ll repost in several weeks.
A question for the group: If you get down to therapeutic levels, what happens to the risk from the various bacterii?
Does it match those of people with “normal” SF levels? I would presume so but I am not a doctor yet.
April 7, 2009
I was recently diagnosed with HHC…I had a ferritin level of 3994 and I’m only 26. I felt just fine before phlebotomies, but now that I’m having two phlebotomies a week of 500ml each time I feel pretty wiped out… I suppose this is expected?
July 10, 2009
Hi all
Update on my situation. I have just completed 3 years of phlebotomies (every 3 or 4 weeks) and my count is back to normal. What is apparent, I will have to have maintenance phlebotomies monthly for the rest of my life. My doctor put me on self maintenance 6 months ago. The 1st of every month, I go for blood work with a standing order and then call the office the next day. If my count is above 250, I go into the hospital for a phlebotomy and start the process over again in 4 weeks. I only have to see the doctor once a year.
LPH
December 23, 2009
Update December 23/09
Yesterday, December 22nd, I was at Port Perry hospital having my monthly Phlebotomy, (I know sounds funny,) when I had what my doctor described as a “Phlebotomy Trauma Event”. (Note: I’ve been having monthly Phlebotomies since 2006)
At approximately 10:00 a.m., I was in the ER having what was a normal Phlebotomy. After I was hooked up the nurse put the bottle on the floor so that I could see it. The procedure usually takes about 15 to 20 minutes and they take 600 cc’s if they can get it. The nurse then left me to do other things and said that she would be back in 10 or 15 minutes; not unusual at all.
At the 250 cc point, the blood flow suddenly stopped. I tried to adjust the needle but nothing worked. I had a tourniquet on my left arm and I remembered that previous times nurses had released the tourniquet, which resulted in the flow resuming. As the nurse was nowhere in site, I sat up on the edge of the gurney and release the tourniquet. Immediately there was a loud gurgling sound in my chest and I felt like I was going to faint. Fortunately, the nurse came around the corner at that exact time and asked, “How are we doing?” I replied, not well. I told her what happened and she said, “I’m going to stop the procedure.”
I immediately went into shock. I was hooked up to a blood-pressure monitor and my heart beat dropped, my blood-pressure went from 124 over 80 to 88 over 48 in a matter of seconds. I was soaking wet from perspiring and I couldn’t breathe. They gave me oxygen but I was coughing up junk at the same time. I thought that I had bought the farm and was very surprised to find that I was still alive.
They called my doctor and he arrived from his office, shortly after. They took blood work, hooked me up to an Electrocardiogram and other devices. Slowly my blood-pressure came back to normal, my fever went away and I started to feel better. After 5 hours in the ER, the doctor released me explaining that I had suffered a “Phlebotomy Trauma Event”. The problem is that today, my lungs are sore as hell every time I cough.