Phil’s story is enough to make you weep – years of being sick, not looking sick, being harassed by family, friends, and co-workers, losing his job, multiple doctors and multiple wrong diagnoses…until he finally finds the right treatment and lives again. A must read, because this is a remarkable man with a remarkable story.
A long hard road began for me when I was 40 years old and in the prime of my life. We had just bought a new house and I had received a big promotion at work. I started feeling very fatigued, and didn’t say a thing to anyone. For four months, I just kept pushing myself to look and act normal…until one day I could not get out of bed or go to work. And I had just gotten over a bad auto accident with a bad head injury.
After visiting my doctor for a checkup, he knew something was wrong and proceeded to order labs. A week later, I was put on sick leave with iron levels so low that iron shots were recommended. This upset me because my mother was almost killed by iron shots to help her own low iron.
My next move was to see a specialist. Contrary to the first doctor, this one said my iron was fine. I explained to him that after an auto accident with a head injury, I was walking around losing my balance and falling down a lot. The diagnosis was Meniere’s Disease – an unknown problem in the inner ear.
Soon afterwards, I came down with pneumonia and my left side went numb. I was sent to see a Neurologist who told me I was lucky to be seeing him since I have inflammation of the brain. And the pneumonia was the last straw for my antibodies that were keeping my brain from swelling up and killing me. He treated me with some steroids and I was one again fine. No more problems.
But six months later, I am again very fatigued, and so badly that I couldn’t work.
The next doctor specialized in Chronic Fatigue Syndrome (CFS), and she stated I was suffering from major depression! I had to go along with this to keep my job and sick pay. I was sent to see a psychiatrist and told him my story. He told me he wanted me to see a therapist 2 x’s a week and gave me a script for an anti-depressant.
This crap went on for 5 years. I was told I had everything under the sun mentally wrong with me. I walked around in a fog…all drugged up on every damn anti-depressant med on the market. My job as an Automotive Manufacturing Engineer was being challenged – why I was not getting better and when was I coming back to work, etc.
This damn psychiatrist told my employers and my wife that I didn’t want to get better…that I liked being depressed and that I will never get better. After this my wife turned into a some kind of monster, telling me I would be better off dead, that there was nothing wrong with me and just go to work. And I could see this was it for us. We filed for a divorce. She took the kids and moved out.
As an Engineer at Chrysler, I was lucky that we were in the Union. So they were doing the best they could to keep my job. So here I am all drugged up, stressed out, damn sick…and more so from the meds than what I suffered before seeing this psychiatrist.
The new house was up for sale and my wife and I were a week from the divorce being final. I was then put on a new drug called Prozac. This was horrible. I was in a stupor and the side effects were so bad I just wished I would die. Also, the Prozac did something to my ability to void, which resulted in a bad bladder infection.
I was then sent to see a Urologist, which started a change in my life. He looked at the paperwork I filled out, sat down and talked to me for an hour, asking me why I was on all of these anti-depressant drugs and how I felt before seeing this psychiatrist. He then stated that my problem was not major depression, but may be low testosterone. WOW, I was so happy. He explained that I needed to be off these anti-depressants, that the voiding issue was a result of the meds, and that I am not suffering from Major Depression. I had to go into a Re-Hab Hospital to get off all the damn AD drugs I was on. I was in this hosp. 30 days while seeing a therapist who was telling me I have a problem with addiction. Damn, when do these nuts stop!!
I went on meds for low testosterone and was back to work in 30 days. My wife had her lawyer call mine about trying to get back together. I said I would give it a try, but first my wife should see a therapist. I felt that anyone who would treat a sick husband the way she did me has to have a big problem. She agreed and we are still together today, but it’s not the same between us.
Still things were not right with my health. I was on and off work on sick leave more than I was at work. I was harassed by my employers, implying nothing wrong with me. I was sent to neighborhoods to see Dr.‘s who looked like skid row drunks. Because I did not look sick, I could not talk to my family about how sick I was. And if I let myself get into a conversation about my health with family or friends, it always turned into disagreement. I just did not see how someone can stand there, and tell you to ‘just pick yourself up and get on with your life because you don’t look sick’.
When I would go back to work I would get this same crap from my co-workers, such as “How long are you here before you go back on Vacation again?” I felt like I was all alone with this and no one to talk to about it.
Then one day, I was coming back to work from sick leave, and I was once again put on sick leave by the Company doctor. When I went home, I got sick and passed out. I was told I was too sick to come back to work and they are not paying me sick pay. More harassment. I went and applied for unemployment and two weeks later, I got a letter saying my work told them I was on sick leave. So now I am off work and no money to live on.
I got damn mad. I went to the Union and all they had to say was that they were looking into this. So I went to the Government and filed a complaint against my Company for discrimination because I was sick. Long story short. I won and at the age of 55 I got an early retirement equal to age 65 with a damn Big Settlement.
Now did this help? No, it made my life worse. There I was now sitting at home and couldn’t find a job. The newer meds made things better, but still I was not 100%.
Two years ago, I came across a site by Dr. John who treats men for low testosterone and puts his treatment on his site for free. I printed this out and gave it to my Doctor, telling him I need to try this. He looked and said “Why not.” I stopped using a Gel that I rubbed on my upper arms and shoulders for Testosterone and went on shots. We added HCG (Human Chorionic Gonadotropin) and in 6 weeks I went back in for blood testing. My levels have been checked every 6 weeks for years. My levels for Total Testosterone went from 600 to 1200. I asked my Dr. how is this possible, since I am Primary, which means my testes don’t make testosterone. He explained that my Adrenals must have made this testosterone.
Next blood test…same thing. So it was not a lab error and my testes did work! There is no way my Adrenals can make this much. Nothing showed up. Now going back over my labs and my tests from as far back as when I first got sick, my Dr. told me I must have damaged my pituitary gland in the auto accident I had some 23 years ago, meaning I was Hypopituitary. My labs going back 23 yrs were screaming that my DHEA, Cortisol, Thyroid, IGF-1 and Testosterone were all low normal, and testosterone was below normal.
Now I am damn mad about all those years and all those Doctors and Endo’s that missed this. My life would have been a lot better if they had done their job right.
Still, my doctor would not treat my low cortisol or low thyroid, saying my labs are low but not that bad. I was doing OK — getting exercise for the first time in years, walking everyday and going to the gym at the Old Persons Club in my town. I lost 65 lbs and felt like I had this beat. The HCG was bringing up my cortisol and thyroid levels some. But with the arrival of winter came the same Bronchitis that I had every winter. But this time, it was so bad that the meds didn’t touch it. I couldn’t breathe all winter and into the summer. I had my doctor again test my cortisol, and finally they were very low, as was my thyroid.
Still my Dr. would not treat me! But I had found STTM by then and was up on all of this. I got some Armour from my wife who was on it, and ordered Isocort in order to self-treat. Wow! I started feeling better and I could breathe again. Finally, my doctor could see I was doing better and started treating me. I started charting my temps to see how my adrenals were being supported on the Isocort, and when I needed to up my Armour again.
I got up to 2.5 grains and leveled off for about 6 weeks. The Isocort was not doing the job. My doctor put me on Cortef – a big plus in my health. I was able to go higher on the Armour and ended up at 3 grains (one grain 3 x’s a day). Still I was not right. The fatigue was still there and I had to push myself to do things. With the heat of the summer, I would pass out if I stayed out to long. I read about low Aldosterone levels at Chris’ Forum here on Hypopituitary Issues. I already knew Chris from the boards for Men’s Health on low Testosterone. I myself have been helping men with this problem for the last 6 yrs. on the boards. I got my Aldosterone and Renin levels tested and they were low…yet my doctor again says no to treatment because they are not that low. Two months later, I asked again for the tests, and the results were even lower. Finally, he put me on Florinef.
Another wow. I am not sweating all day and night; no more fatigue, and I have ceased going to the bathroom every 1.5 to 2 hrs around the clock. I can go outside, cut the grass in the heat of the summer and not even feel overheated. I am back at the Old Persons Club working out in the gym, and I don’t need the rest of the day to recover. I feel great. I can’t tell you how much I owe STTM for my health. I could never have done this without them.
Phil
