I am the mother of a young woman who has been ill for over fifteen years.
As a very young woman – at her 21st birthday and engagement party, she was a size ten and in very good health. She was a healthy child who grew up in a home where sound nutrition was practised. This is an endeavour she has carried into her own married life, leading a very healthy lifestyle and preferring organic food.
She has never smoked, drunk or used any illicit substance. She ought be very healthy.
Over the past few years she has been increasingly ill. Extreme fatigue, massive weight gain, in the upper body and around what used to be her waist. She has the classic moon face, with no distinguishable jawline or cheekbones. She has a great deal of fat around her neck and a defined ‘buffalo hump’.
She has had a variety of ‘tests’ done by conventional pracitioners, with a diagnosis of Poly Ovarian Cystic Syndrome. I believe she has Cushings and have encouraged her to seek alternative help. She has ‘given up’ on doctors as she feels as if she has been treated with disdain. She has a remarkably positive attitude and a husband who is very loving and supportive.
She does not have the ‘stretch marks’ of Cushings, but my understanding is that that is not a prerequisite. I have become increasingly concerned about her each time I visit, which is at times, with a few months between seeing her and cried all the way home after the last one, such is the increasing change I see in her.
I am concerned the outcome will be fatal and have finally encouraged her to see another doctor here. I want to take her to a doctor who is holistic in their attitude, something that seems hard to find.
She is now 40 and nearing the end of her potential child bearing time. I am sad for her that a misdiagnosis and frustration at achieving no result, will not only potentially be fatal, but that the goal of motherhood for her, can not be achieved.
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Feb 21, 2014 @ 14:25:50
Trish, that is my story. started gaining weight at 22, told I had PCOS, years of dieting and exercise, became sicker and sicker. Found the piuitary tumour at age 35. Nearly destroyed my life. Tumour removed. most symptons gone. Encourage them to do all the testing dexamethasone, chest xrays, MRIs. bloods and urine tests – I was admitted into hospital in NZ for 10 days for testing. The operation is easy, the recovery is challenging but nothing compared to living with the disease untreated. Don’t give up.
Apr 24, 2014 @ 19:19:54
Hi Amanda, what tests did you have to diagnose Cushing/pituitary tumor?
My daughter is only 14 and I can totally see all the Cushing syndrome signs on her. Not sure where to start with her. We did basic tests and they came back just fine.
Apr 25, 2014 @ 07:28:47
Hi. I had the basic tests for years. The diagnosis came when a very smart Endocrinologist hospitalized me for 11 days and ran 4 hourly bloods and urine tests – 24 hours per day. He did chest xrays, bone density scans, MRI of pituitary. The dexamethasone test can vary from week to week so not conclusive but keep testing – the high reading was the initial trigger. Just keep loving your gorgeous daughter and keep her healthy. reducing carbs helps a little bit but I still struggle with the weight now. Get second and third opinions – I tried all sorts of natural stuff that didn’t work and cost a lot of money so balance it if you can. Research the internet, read the books. It is amazing what you learn.
Sep 26, 2014 @ 17:31:37
Hi Amanda, I had an initial high cortisol test about 5 years ago, since then i did numerous 24hr urine tests which all came back normal, I am convinced something isnt right though. What kind of symptoms did you live with till you managed to get the diagnosis? How severe were they? How many normal tests/high result tests did you have? I just did a salivary cortisol last week and it was high-normal, 19n/mol 7am and 3.1n/mol 12am. I just dont know what to do any more, whether I should keep trying, or whether I dont actually have it.
Sep 29, 2014 @ 07:43:45
Hi. have you had the dexamethasone test that suppresses your pituitary gland? you may need several of these. I did lots of 24 hour urine. However, our cortisol levels naturally fluctuate so that can’t be the only tool. My main symptoms for the 10 years before were the weight gain but in the year before diagnosis, I got most of the other symptoms with the round face, hair loss on head, camel lump, hair growth on face, muscle weakness, fatigue, depression, acne, my periods disappeared for over 2 years.. I call it the ugly disease. The doctor would not confirm until he had done the MRI and 10 days of blood and urine. Don’t give up, keep researching, find competent doctors and endos who have trained in big hospitals. What are your symptoms?