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I need advise really bad


HollieK

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My name is Hollie. I am 32 years old, and I have just about had all I can take of all of this. My story is probably like about a million other ones out there, but when it is happening to you, you feel like you are the only person in the world with these problems.

My story started out with my doctor finding that my thyroid was a little enlarged and sending me to an endocrinologist. After some tests they discovered a small nodule on my thyroid. After some further tests they determined that it was ok to leave it alone and put me on synthroid to make sure that it didn?t get any bigger or bother the function of my thyroid. Needless to say that was just the beginning of my ordeal.

At one of my visits with my endo she noticed the bruising on my legs. I had been bruising very easily for the past couple months, but really didn?t think much of it. She started some more digging around and questioning and asked me about my blood pressure and anxiety. I had been on blood pressure medicine for a few months by then, and also Zoloft for anxiety. She decided to do some further blood work, and discovered that my cortisol and acth levels were high. She then had me do a 24 hour urine test which also showed high levels of cortisol. She had me then do a MRI of my adrenals and my pituitary glands which showed absolutely nothing.

So then I guess she decided it was a fluke or something because nothing was done, she just kept me on synthroid and set me up for an appointment 5 months later. Well during that five months things seemed to get a lot worse. My bruising was horrible, my weight was out of control, my face looked like a basketball, I was getting stretch marks on my stomach, and I was growing hair on my chin that was never there before. I had constant headaches, night sweats, a horrible case of dry itchy scalp, and my blood pressure (even on meds) was getting higher.

When I finally got to my next appointment, she sent me for the entire same battery of tests and everything came back the same way. Still no sign of anything on my MRI?s. I then did another test which required me get an 8am cortisol blood draw, take a DEXO pill at 11pm that night, fast, then draw another 8am cortisol. Once again same thing high levels of cortisol and acth.

She keeps saying it looks like cushing?s syndrome, but won?t give me a final diagnosis, and instead of doing anything it just seems like she keeps sending me for the same tests over and over again. I am now to the point where I am fed up. I?m not sure what to do. Should I try and find another doctor (nearest endo 2 ? hours away) do I tell her to fix something ASAP. What do I do? I can?t keep living like this. I am gaining so much weight, and now she tells me that I am hypoglycemic and on the verge of diabetes. I don?t understand why something can?t be done. There has got to be something? Anyone, Advice Please? I need help.

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My Story is almost word for word the same as you. I am 29 and have been dealling with this for over 7 years now. I finally got an MRI that showed my tumor on my pituitary. I took the bull by the horns and went on the internet and found a few different Hospitals and Clincs that specialize in Pituitary tumors and cushing's syndrome. Nearest to me is OHSU Oregon Health & Science University in Portland. You can print off a referal from your computer and take it to your endo. My Endo was actually excited about it. She hopes to learn more from the Specialist there. I have an appointment there in 2 weeks. Portland is over 8 hours away for me but after this battle it will be worth it. Good Luck.

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I think you need to find a different doctor who is knowledgable about this condition. I was going through a lot of the same symptoms as you...moonface, bruising, wieht gain, muscle and bone weakness, etc. It was actually my Hemotolgist that had a feeling that I was the perfect "specimen" of Cushings syndrome. I had been told years ealier, after being treated for kidney stones, that I had a mass on my right adrenal gland, but I had nothing to worry about. Well...6 years later and 6 years of hell...I was told that the mass was actually what was causing the Cushings and last October, I had the mass removed along with my right adrenal gland. I have felt great up unyil a few weeks ago...I am again suffering from severe fatigue and other symptoms...so I have to again go through the gammit of test...we'll see what surfaces this time. Sorry for the rambling, but you should definately see a different doc...I'm in NE and they seem pretty knowledgable. Thanks.

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Hi,

 

I just recently posted my story too. I honestly think that u likely have a tumour but it's too small to be showing up on the MRI. In my research I've discovered that A LOT of cushing's patients adenomas are less than 8mm and when the Doctors get in there they find them. Sharmyn McGraw's tumour was too small then it showed up on another scan when it grew. I could be wrong but it seems like u have all the symptoms. I have just been told they think I have cyclical cushings which makes a lot of sense - I'm not always unwell and get frequent periods of normal biochemistry - this could be a possibility for u too? With this disease we all need to push the doctors and get them to test as as much as possible, thats what I've had to do and finally the results are paying of. Get them to do bloods and urines as much as possible, tell them you will do them at home (the urines and send into the labs). Beg them. xx

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