Today is a fairly good day so far. I accomplished something for someone who has no idea they are about to receive a blessing. I love doing that!!!! I used to do it often but my health got so bad I was unable to do anything for myself, must less anyone else. I'm still dealing with a UTI that is stubborn, like they all have been but it's getting better I think. I talked to a friend in Texas that also has Secondary Hyperparathyroidism (SHPT) but so far she hasn't been officially diagnosed yet but she does have an appointment with an Endocrinologist the end of the month. She had a PTH test run by her PC doctor and it was very high yet the PC told her they would just watch it! NO!!!!!! I can't say this often enough. If you've had gastric bypass, of any kind, and you have the symptoms I have had for years, Do NOT let a doctor tell you they will just watch it. It will not get better, believe it, it will only get worse. You may have to go to many doctors to find the right one (I'm going to be working on that when I see Dr. Sandahi at the end of the month). It's sad you have to do that, I know, I did it for three years. If you are exhausted, not just tired, I mean totally exhausted all the time, have pain in all your bones, constant UTI's, just totally sick all over, I want to help you find help if I can. I'm going to ask him if he has any idea or knows of any of his colleagues from Johns Hopkins, that understand this disease and know how to treat it. If he does, I will ask him to help me connect people if possible. I totally understand the frustration of going from doctor to doctor and still getting no answers yet you know you are sick! I can't tell you the times I did that. I'd go have all their test and they couldn't find anything so they ended up telling me various things such as it will go away in time, I just can't find anything wrong with you (that's when they insinuate it's all in your head!) and you leave the doctor in tears. I have told my husband so many times I was just going to give up and die as the last doctor told me to do. He said I didn't want to help myself, LOL. Is that a joke or what????? I wouldn't have drug myself to doctor after doctor, hospital after hospital, test after test, if I wanted to come home and die. I can tell you the depression that comes from it. I can tell you the tole it takes on your family & your caregiver, I can tell you how many times I honestly did believe I would just end up dying in my bed and nobody would ever know why. That's how frustrating SHPT is. I know of sweet, precious friend that was in my support group after gastric bypass that I started searching for when I became so sick and I searched on the internet to find her since I had lost contact with her. What I found was her obituary!!!! She was seven years younger than me, a beautiful woman and such a gentle soul and she died and nobody knew why. I finally found her daughter on Facebook and ask her what happened to her mom that caused her to die and she told me they never knew for sure. They guessed at many thing but in the end her kidney's shut down and she died of renal failure. I didn't know then what I know now but now I have no doubt that sweet Mary died of SHPT because it was never diagnosed. That is so sad to me. She didn't have to die if some doctor had known the connection to gastric bypass and Secondary Hyperparathyroidism. I still have four or five friends out there that I can't remember their last names that I would love to find to see if they are sick yet and to tell them about SHPT. I imagine that if I'm so sick from it and we all had it at the same time, one already passed away from it, it is so important to tell them this but so far my search for these friends isn't going well at all. I need to remember last names but I just can't. Also, if you go to an Endocrinologist, as I did, that doesn't even know what SHPT is, you're at the wrong one, find another one. I read on the Norman Clinic in Tampa, Florida's website, which is a wonderful website ( I posted a link to it below) that even many endocrinologist don't understand or diagnose it because it's just a hard disease to diagnose. You can go to Norman Clinic's link I just posted and learn as much as I have about SHPT. They don't have a whole lot about Secondary Hyperparathyroidism but they do discuss it some. The reason it isn't discussed much is because it's not common to have it but if you've had gastric bypass that is exactly what you have or will have because it's caused by the gastric bypass. But........ there is hope. I am getting treatment now and I am beginning to get better each day. Oh I have bad days still but mostly I have good days. I hope this blog is encouraging somebody out there that there is hope, you can get help and you don't have to die. Please keep trying to find a doctor that can will treat you for this disease!!! http://www.parathyroid.com/
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