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Lili, Undiagnosed Bio

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58 yrs old
have every symptom

blood work 9.86
midnight saliva 0.27
urine not back yet

history: total thyroidectomy 10 yrs ago
cancer free of thyroid for 10 yrs

 

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Stacy B, Pituitary/Adrenal Bio

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Hi my name is Stacy Boswell. I am 42 years old and from Indiana.

I have tumors on both adrenals and one on my pituitary. I have had 2 saliva highs and 4 dex tests where I did not suppress, with low to normal ACTH and high cortisol.

I am meeting with a 3rd endocrinologist in February due to my my last endo dismissed me stating I was a complicated case. She refused to do an IPSS stating that there isn’t enough clinical proof but offered to put me on a new trial drug in which I declined.

I am unable to work and trying to get long term disability through my job I did have prior to all of this. I also have hashimoto and had a total thyroidectomy this past July. I as well have had a complete hysterectomy back in 2002 due to pcos, endometriosis and cervical cancer cells. I have had genetic testing done for MENS 1 and AIP I am awaiting those results as well as waiting the results for Sjogren’s syndrome test. I as well just been recently diagnosed with occipital neuralgia.

All the specialists that I have seen all state these things would more than likely subside if the Cushings was treated. I feel at a loss and hopeless. Indiana is a dry state for cushings specialist and I do not have the means to travel so I’m just stuck.

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