PATIENT STORIES

MARGARET KENNEDY’S STORY

THE CARPENTER’S STORY

Sarah Siminsh

“I am writing to thank you as through the information you published, I was able to help my brother (age 40) overcome a low iron and anemia diagnosis. After several episodes of headaches, nausea and dizziness, a complete blood test revealed that his iron levels were dangerously low. He was tested for parasites, sign of blood in his stool and for celiac disease among others. He was also given an upper GI, colonoscopy and kidneys ultrasound. At this point the doctor was recommending to look at his small intestine that I understood was more difficult and less frequently done. Through my research I came across an article from your Spring-Summer issue 2002 titled “Helicobacter: H. Pylori, A common bacterium often overlooked by physicians”. Through personal and family experience I was aware just how devastating this bacterium can sometimes be but I did not know it could also cause low iron and anemia. After reading this article, I was able to find a number of studies with similar results and conclusion, I asked my brother’s doctor to request a stool test for H. pylori but he refused insisting that H. pylori could not cause anemia. A different doctor finally requested the test and sure enough he had high levels of the bacteria. Less than 2 months after H. pylori eradication, my brother’s iron levels went back up and it is within normal range now a year later. This information helped us avoid a small bowel endoscopy and additional headaches chasing the root cause of this problem, thank you!”

Camille Mason

“In the fall of 2007 I tired all the time and had an irregular heartbeat. At the same time my brother had been diagnosed with porphuria cutanae tarda, a skin disease. His dermatologist told him that is iron was elevated in his bloodwork. I began reasearching and found hemochromatosis and read about the systoms. I went to a gastrologist that I knew and told him my concerns. He screened me and I had a ferritin level of 560 with a 91% iron. I tested positive for hemochromatosis and so did my brother. My brother’s 3 sons were tested, the youngest has the disease and the other 2 are carriers. All 3 of us had our phleboltomies and now getting maintanance labwork and phlebotomies. My brother has type 2 diabetes which the doctor attirbutes to the heomchromatosis. His skin has cleared from the lesions of the porphuria. After 18 months only rarely am I tired. It is really amazing how much better you feel after getting the iron and ferritin down to normal levels. I think everyone with a complaint of tiredness, joint pain, DM, irregular heartbeat and post menapausal shoud be screened.”

Jan Labuschagne

“Six months ago I was diagnosed with hemochromotosis.My feretim levels was 1300%.I started donating blood every second week and then I find on the internet a cookbook named “The hemochromotosis cookbook”My wife nust prepare all my food in a tea or coffee mixer to bring the iron down in what I eat.In just 5 months and with the grace off God my levels are fine.All my organs are fine but I have to drink a pill every day for my blood sugar.I drink a lot off water because off this.”

Karen Smith

“I found out I had Hemochromatosis a couple of years ago. Just recently felt the symptoms were really affecting my life, feeling tired all the time, depressed. My doctor did the testing and I have the hereditary hemochromatosis. My ferritin was 300, since February 2018 I go every month to have my blood taken. It’s June my ferritin was down to 90. I went last week to have my blood taken, they also check HCT and my doctor cut mine to no lower than 33%. Mine was at 34% my frustration is it made me so tired, I was in bed for 2 days with no energy. I feel I am borderline Anemia, which is so frustrating because the symptoms of Hemochromatosis and Anemia are very similar, yet opposite how to manage them. How can I find a balance? Are there others dealing with this frustration as well?”

Michelle Navis

I am a 37 year old, mom of 5 children, active, and try to live healthy. For the last ten years I have been running a cyclic fever. The week before my menstraul flow, I will have a fever from 99.3- 101, joint pain, muscle fatigue, abdomen pain, some night sweats.. I have had a myriad of test. An food allergy test showed I am allergic to 16 different things, I have avoided these foods for a year and the abdomen pain is gone, but the rest of the symptoms are the same. At the same time I had allergy test, they found my iron was down to 9…

Jamie Munselle

My daughter is nine years old and has had iron deficiency anemia since age one. Several years ago we tried all the oral therapys and infusions. Shes had all the test to try to diagnose her disorder but we got nothing. Her hb runs at 7 normal being 11-12. I feel that more can and should be done for her. Any help would be appreciated. We are willing to do whatever it takes!