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Almost 2 years Post Surgery and I finally see the end of the tunnel

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Replied by pnaadmin on topic Almost 2 years Post Surgery and I finally see the end of the tunnel

Keeping track of medications and symptoms is helpful when trying to determine correct dosage and which medications work (or don't). The pituitary is so complex and everyone reacts differently to medications and everyone's symptoms vary.

Good for you for being proactive and doing your research. Advocating for yourself and being an active part of your medical team is so important. Knowledge about your condition and sharing your symptoms and reactions is paramount to obtaining the best medical care. 

I am so glad you are doing better.

Take care,
Tammy
2 weeks 6 days ago #10586

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  • Chelby
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Almost 2 years Post Surgery and I finally see the end of the tunnel was created by Chelby

Hello everyone, 
I had pituitary surgery on April 10, 2017 to remove a microadenoma that was causing cushings disease.   My major cushings symptoms were insomnia,  and night sweats.  I ended up in the hospital with a blood pressure reading of 200/140.   They kept me in the noisy hospital for 10 days . I was sick, jumpy and I barely slept in a chaotic cardiac death ward and eventually fled the hospital in the middle of the night "against medical advice".  Lying in my own bed with a racing heart that night thinking I might die (or at least lose face and go right back to the hospital) was the worst night of my life.   But the next day I decided to be my own docter and nurse and do it my way., it seemed to me to be the only way if I was going to survive.  I started carefully documenting all the medications I tried.    I saw an endocrinologist I had met in the hospital and it took 8 months to end up with a diagnosis.  Being in Canada and going through the canadian medical system takes time but it was very by the book.  I just had to throw myself into the machine and do as much of my own research as possible.   I had all the tests in the textbook order.  cortisol, midnight salivary, cortisol day curve,  dexamethasone suppression test, both long and short,  MRI,  and inferior petrosal sinus sampling which was one of the craziest experiences of my life.  
After surgery, it took 3 weeks to crash.  It was thought the surgery had failed.   But I declined slowly but surely into the opposite of cushings and embraced adrenal insufficiency.   It took me about 10 months to feel like my pituitary was starting to do the right things again. Now one year and 10 months later I am starting to feel "better" , whatever that is like.   
one thing that helped me was keeping track of all medication.   I realized docters were just experimenting with me half the time to see what was going to work.  All those meds really bummed me out.  Now I only take half of what they prescribe me at first after I have thoroughly researched the drug. 
3 weeks 3 days ago #10581

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