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Everything posted by SuzieQ23

  1. I don't know much about the cycles talked about. I do know that it has been 16 months since I had a pituitary tumor removed. I am still taking 25 mgs. of Cortef every day. That's the same dosage I started out on after the tumor was taken out. I have had my cortisol levels tested and I am supposed to cut back on the amount of hydocortisone I take but everytime I do even by 2.5 mgs. I get very achy and my muscles feel tired and weak. I think it would benefit to have a meter to help watch the levels more frequently to know how to ajdust the hydrocortisone. I don't like being on it and want to be able to stop it completely. I have also noticed that when I need to adjust the cortisone, I also have blood sugar readings that fluctuate more. I am a diabetic, type 2, but since the tumor was removed, I no longer have to take any medication as that has inproved. I used to take 2 medications for high blood pressure too, and now take none, my blood pressure is great. That's another thing I can monitor at home, so why not have a way to monitor cortisol levels too? My endocrinologist has been very supportive and if not for her I don't kow how long it would have taken to get the diagnosis and get the tumor removed. She is great, and I plan to ask her about this idea of a meter when I see her in a few weeks. Hang in there and prayers for all. <---my hair is something like that, now that it is coming back in on my head and not on my face! Healing is a process! It doesn't happen overnight. About one year ago at this time I had it shaved, because it was so thin and I had too much pain to reach to take care of it. After physical therapy I can walk a mile a day, and wear my shoes and socks. Before that my feet were too swollen and painful! I'm glad for this support site and the notices on Facebook.
  2. I would like to find out where to get yellow and blue lapel pins, but don't see them with the t-shirts and other items for sale, thanks
  3. Went to pain clinic today for 4th and final visit, told doc no more steroid shots,they didn't help, made pain worse! Have a lot of shoulder, back pain, muscle weakness, increased Cortef to 30 mg.a day, if I take less I get nausea, and feel worse. Wonder when it gets better when I read some of the other peoples stories. But I have hope, always hope!

  4. Did you have a pit tumor too? The doctors had to do 2 surgeries to remove the one I had, there was too much bleeding the first time so they had to stop and reschedule it for 3 weeks after the first one! Barely had time to heal from that first one!Not something I care to repeat! I used to play classical guitar but can't even lift it right now. I used to do a lot of cooking too, ...

  5. Hi miszieanne and Suziet88,it seems like about every other day I'm good,the back and rib pain is the worst, some days just use ice packs for a little relief. Not depressed, want to hurry up and get better. my muscles are weak sometimes, joint pain isn't too bad. Pit tumor was removed 11/2010.Am taking 25 mg. of Cortef a day, and almost done with 1st month of Forteo shots.

  6. still waiting to hear from anyone

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