My name is Chris. I'm 51 and live in southern Ontario, in Canada. I've been sick since March 2017, with hemochromatosis-like symptoms. I have a tender abdomen and diaphragm area. I have extreme fatigue with minor physical activity, and excessive, interrupted sleep. If I exert myself too much I develop a cough. I have had sporadic night sweats, but no regular fever. Two separate one week bouts of Prednisone reduced the tenderness of my diaphragm and ribs, but it came back each time, after finishing the medication. I can't tell when I'm hungry, and at first was gaining weight, but have cut out some of the worst parts of my diet, and I have now lost 15 lbs since January, mostly intentionally. I'm now back to about the weight I was when this started.
In June, an iron test came back with ferritin levels at 1050 ug/L, then in September another test was over 1500ug/L. I had a CT scan in October that ruled out asbestos related lung illness, as I had had prior exposure to asbestos. My transferrin saturation was tested in October, and came back in a normal range (35%), so hemochromatosis was ruled out.
I've been tested for various fungi, moulds, asthma, lupus, rheumatoid arthritis, mono, and everything has come back negative.
I had an abdominal CT scan done in late January, and there is no obvious inflammation or cancer. My doctor had suspected possible lymphoma, which isn't there. In our meeting yesterday, he was about to suggest watchful waiting. I feel like death warmed over, and asked him about Ferroportin disease, having read some posts on this site. He admitted not knowing much about it, but agreed to another ferritin test, and said if it was still high, he would refer me to someone else to investigate that. He said he would have to figure out who to refer me to.
I had that ferritin test taken yesterday, and will have a follow up appointment in two weeks. We'll see what happens from there. I presume he will refer me to a hematologist if I still have high ferritin?
I have had unusual skin pigmentation since November--I look like I've been on a beach all summer, except that I have no tanlines, and the insides of my arms are unusually almost the same colour as my forearms. I've had high blood pressure for about 3 years (normal with meds), that I imagine could be connected to my other symptoms. In December, my shoulders started hurting badly, almost constantly, and most days my fingers feel arthritic, even without any major activity.
I'm starting to experience what I would describe as "brain fog". I lose my train of thought easily, and am forgetting things I normally would not.
My doctor didn't run any genetic tests, as he figured that the normal transferrin saturation ruled out standard hemochromatosis. I understand from looking at various treatment flow-charts that that is standard procedure, but that other inflammation or cancer will likely be discovered. Which in my case, it hasn't.
My family has a history of diabetes. My father had Type 1 diabetes, his brother (my uncle) had Type 2, and his mother (my grandmother) also had Type 2 diabetes. My father and uncle died around age 50 from related causes, and my grandmother in her 60s. My blood sugar is high normal, but my doctors don't seem less concerned about that than other things.
I have found it helpful reading other posts here. If anyone has any comments or suggestions, I would welcome them.
Thanks!
Chris