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Voices from the Past: Alex, Pituitary Bio

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After long and tiring process was diagnosed with Cushing disease in June 2011.

Had a surgery to remove pituitary tumor in July 2011.

Remained on the cortizol for 18 months.

If you live in New York metropolitan area and have a pituitary tumor and would like to ask some questions or need suggestions, please email me.

I have seen the worst of this disease, but was able to make it through. I was lucky to have right doctors (neuroendocrenologist and surgeon).

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Voices from the Past: Amanda P, Pituitary Bio

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Amanda Paxton, aged 41. From Auckland, New Zealand. Grew up in California. Currently living in Doha, Qatar, Middle East.  This is like speed dating :).

Skinny and healthy until my 20s, started gaining weight, it took 5 endocrinologists and 12 years of increasingly agressive symptons to find the tumour.

They kept telling me I had PCOS and needed to diet and exercise more – how often have we all heard that??  It was so frustrating.  Countless trips to naturopaths and kineisologists and chinese herbal doctors and nutritionalists and dieticians and weight management specialists.  Countless diets – South Beach, Atkins, Dukan, Weight Watchers.

Found the tumour just before my 35th birthday.  Successfully removed it (biggest one the neurosurgeon had seen) transphennoidally.  Had less than a year on synthetic steroids – hydrocortisone. Periods returned – have had 2 beautiful daughters post surgery and one beautiful daughter pre surgery.

We now think there is another tumour as symptons have returned.  Unexplained weight gain, no loss with diet and exercise, hair falling out.  Should have test results in a couple of weeks.

I have an amazing life with a great family and I am really healthy, except for weighing 100 kilos.  My biggest concern is not being here for my family or developing diabetes or heart disease esp with the weight.

I will keep you posted.  Nice to meet you.  Would love to hear from anyone who has had 2+ surgeries with any advice.

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