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Amanda's Story

I am a 30 year old female.

I was diagniosed with Pituitary cushings about 2 years ago. Symptoms really started to show around 1999. Since I have been diagnoised the doctors who would be treating me after suregery do not believe I have the disease. I have seen one expert and my local endo. who beleives I have the disease. However, the others do not believe it.

I have just about every classic symptom plus. Now I am in the process of leaving it untreated. My family physican is putting "a bandaid" on the symptoms. However, I have (like many of you all have) been through extensive testing and they can figure it out. However I am going to walk the long road by not fighting it.

I think that the cortisol will level out at somtime if that is what is made to happen. If not then symptoms might get worse, but the doctors can control to extent the symptoms. So that is where I am at.

Update June 24, 2008

I had a dx of cushings once upon a time. Now I do not have cushings anymore it seems to have cured itself from what doctors are saying. I am still trying to fight the disease. My numbers are high and imaging shows somthing is going on.

While some Dr's still believe I have this disease like my PCP the doctors or endos that I have seen in OH do not believe this to be the case. I know that I need to travel out of state to get a dx this is not an option. I have particopated in the SOM230 study which did not work out. Right now I am all over the place. I somtimes quit and then end up right back here. I have not totally given up on this yet. I am fighting just like all of on here are. I have travled a long road so far, but I think i have a few more miles left in me. This disease is hard and contiues to get harder everyday as I am having complications to the disease now. I will try my hardest though to beat this disease.

I will be updating my bio again around the end of the month will the latest test results and dx.

Update August 1, 2008

Between the months of June 2008-July 2008 I have undergone some more extensive testing. I have now be offically undx with cushings again depsite the high levels of cortisol. I am told that the high levels of cortisol are false posatives due to things such as weight, stress, blood pressure, and the list goes on.

Although my lab work has come normal they have gave me a dx of hyperaldosteronism. They also gave me a dx of FMD and a couple weeks later undx me with this. Although scans prove otherwise. My cortisol levels have contiued run high. The recent MRI is now showing 13mm diameter adenoma of the left adreanal and thickening of the right. The tumor on the pituitary is now gone and has disappreared.

I am still fighting a little. I have mutiple symptoms that continue to get worse. I think I will get better though.

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