----------------------------------------------------------- New Message on Pituitary Chat
----------------------------------------------------------- From: Metro586 Message 5 in Discussion Let me tell you a horrible story.<o:p></o:p> I have been hypopituitary since 1995. That is when I had my first blood test for Testosterone. Twice my primary doctor tested my blood with the results below 50. The range was somewhere around 300 to 800.<o:p></o:p> The Endo orders a blood test and sends it to CA. The result,,,,,12. An MRI revealed the Pituitary was fine, I just had no FSH and LH. The next test sent out was better at 24.<o:p></o:p> I live in Michigan. I am now 42 years old and male. Other test revealed lo TSH was low so I was started on Levothroid.<o:p></o:p> Over the years all my pituitary hormones disappeared and I ended up with Empty Sella, the pituitary just is not there. I could go over the many theories I have heard for this, but I now have 5 MRI's 2 CT's and over 10 years of blood work. I have been suffering form Fatigue for years.<o:p></o:p> I have written endocrine experts at the National Institute of Health in Maryland and The Mayo Clinic in Rochester, MN.<o:p></o:p> On occasion, as a test of my current Endocrinologist I ask for a referral to some new expert I may hear about. This time the referral was to the University of Michigan Neuroendocrine clinic in Ann Arbor, MI. It was the spring 2005.<o:p></o:p> I will use names, A Dr. Chandler specializes in pituitary tumors and a Dr Barkan specializes in hormone replacement.<o:p></o:p> Dr. Barkan took one look at me, 5 ft 10 inches tall, 290 lbs, full thick beard, and asked why I was there. I showed him my MRI that he ordered, and my blood work.<o:p></o:p> His actual response was: "impossible", "you can not be hypopituitary".<o:p></o:p> He asked if I had a tumor removed, I said "no".<o:p></o:p> Dr Chandler came in to see the MRI and chimed in "why are you here?"<o:p></o:p> I showed the history and the last two years of blood work.<o:p></o:p> Dr. Barkan said "these test are meaningless, how do I know they are accurate. I did not draw the blood. Where were these test done and by who?"<o:p></o:p> Honestly! he said this. I showed him that as a precaution I have half the test sent to the University of Michigan lab in the same building. He opened his jaw and said "impossible, I do not believe you, this is not you in these test".<o:p></o:p> I am a big guy, maybe intimidating too most, I can not help what the test show. And I could not help myself, I blew up, I had my 70 year old mother drive me an hour away to hear this. To hear a doctor tell me that the only way he would believe the MRI or blood work is if he admitted me and stood there while they took the blood. He asked for 14 to 18 days of my life, which no insurance would cover to be admitted into a hospital, not to help me with fatigue, but to question the results of several past doctors. I think he should loose his license to practice.<o:p></o:p> I have since corresponded with the NIH and Mayo and the question I ask is: Have you seen or heard of many or any males becoming completely secondary (meaning not at birth) hypopituitary leading to Empty Sella after puberty, but before the age of 30 without ever having any kind of pituitary tumor, severe head trauma, any physical trauma of any kind or known primary cause?<o:p></o:p> The answer is no, so I guess I should not have been so hard on the UofM doctors.<o:p></o:p> I think I was right, but most doctors think I was too aggressive and rude, that is I aggressive and rude.<o:p></o:p> This was abridged but it is 100% true. <o:p></o:p> I have also had positive biochemical test for Pheochromocytoma, even rarer than the hypopituitary empty sella thing and way more deadly. So, I have a lot at stake besides not feeling well.<o:p></o:p> Since then I have gone on the offensive. This is the fight of your life. How you feel is no doctors fault, it's your fault. You have to demand referrals, be proactive.<o:p></o:p> <o:p></o:p> Some things I have found out along the way.<o:p></o:p> I started on an anti depressant in 2002 since it is hard to enjoy life always being sick.<o:p></o:p> The anti depressant was what was causing the fatigue, seriously. Although I slept better at night it made me tired all day long also.<o:p></o:p> Find an open minded Endocrinologist. This does not mean a pituitary expert. This means a doctor that will listen if you suggest alternative medicines and treatments.<o:p></o:p> I take a testosterone shot bi weekly, I have tried patches, gels, everything..because both my doctor and myself are open to trying anything that could possibly be better.<o:p></o:p> I did not think I needed GH, my endo just suggested a trip to a lab and a test. Wouldn't ya know it, he was right, I needed GH. He had me spend a day in the hospital in 2005 for Diabetes Insipidus testing. I was right at the margin. I elected to wait on taking another medication and he honored my wishes.<o:p></o:p> I fax him or email him letters if I have health questions. He will take a day or two but always gets back to me or has an assistant contact me with answers. I think he likes the challenge I present, but he encourages my constant visits to other endocrine specialist for opinions. My wife loves him, can not believe a doctor takes time to call my house to discuss my health issues. She loves that he will say "lay off the bacon double cheeseburgers" in front of her. <o:p></o:p> This is a great doctor. Dr Langer in Warren, MI. I have been to 7 Endos and this one listens.<o:p></o:p> I do not write here because I really have not learned much here and I have other endocrine issues to worry about.<o:p></o:p> I have tons of what I think are obvious suggestions, like: <o:p></o:p> Ask to have your lab work sent to a different lab. I get prescriptions for lab work and have gone to 4 different hospital and 3 different labs in just the last 2 years for my blood work.<o:p></o:p> If youre fatigued, ask for a referral to a cardiologist. a stress test is a good thing after 30 years old.<o:p></o:p> Once a year have your blood work include a liver enzymes test. Ya never know, you are taking a lot of different drugs that the liver processes.<o:p></o:p> Have a 24 hour urine test done for Hydrocortisone, my blood work always come back high, but my urine is always low. This shows that although I am taking 20 mg of Cortef, my liver may not be using enough of it properly. This can cause fatigue.<o:p></o:p> Have your vitamins checked in your blood sometimes. I take a multivitamin every morning, but my levels for vitamins B, D and A were still way low on test. This can cause fatigue.<o:p></o:p> If youre on an anti depressant, try to slowly wean off. The FDA only requires 6 weeks of testing for most drugs like this because they are considered temporary drugs. In my case the long term use of Effexor had serious fatigue effects and coming off of it was horrible......I mean nightmarish horrible.<o:p></o:p> Things I don't want to do but suggested:<o:p></o:p> Loosing weight......geez, I know already<o:p></o:p> Cut down the bacon double cheeseburgers to once a month. (but I love them so...how about if I cut back to twice a week, would that be ok?)<o:p></o:p> The dreaded once a year prostrate exam. I literally walk out of a doctors office on this one. Once in 5 years is enough for me.<o:p></o:p> The colonoscopy.....however you say that....I don't like the way it even sounds. I want to wait till I'm 50 for this...the insurance says bi annually.....it's my butt, I decide not anyone else when and what will go there.<o:p></o:p> The MRI....insurance wants annual, I could care less whats left in my head. last one was 2005.<o:p></o:p> Blood work...insurance will pay for every 6 months automatically for a pituitary patient I think. I cancel this unless I read something on the Internet to test for, or am feeling odd at all. Then the doctors got me. If I agree to give blood he always gets his minimum 9 vials and as much as 13 at one time for test.....I ask him where he keeps his coffin. I have to give once a year or get this.....my insurance carrier calls me and threatens to cut off my GH. They always start with "how are you feeling" and all concerned, but what they really want is blood.......<o:p></o:p> I once said jokingly to my current endo as I handed him the card of my lawyer. "I keep a journal of all letters I write and suggested test and treatments, this is who my wife is instructed to call if something happens to me prematurely to be sure I had adequate medical treatment" He let out an uneasy laugh as I explained I was probably joking.<o:p></o:p> well, ok, I admit, dramatic, and this is a self serving post that has information you will read three dozen time here, <o:p></o:p> Let me conclude....your health is not the fault of anyone but yourself, it's a rare disorder, yes...your doctors want easy patients, Yes...they don't want to be bothered by you.,,,yes....But the squeaky wheel gets the oil...or is that...the buzzing bee gets swatted first?....Whatever.<o:p></o:p> Matt ----------------------------------------------------------- To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. http://groups.msn.com/PituitaryChat/_emailsettings.msnw Need help? 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