Talk to me about Cushings Syndrome

[swellmomma]

Last year I was put through a multitude of tests after my physical due to a long list of issues I was having.  the Dr (in the city) found my male hormones were high, glucose good, cortisol high normal, u/s showed I did not have pcos, and when no adrenal tumors were found she said she didn't know why my male hormones were high but I was fine.  NO follow up, no endo etc so I dropped her.  I did not have another dr for the year, but symptoms not only continued but some got worse.  A dr in town here opened a new clinic and was taking new patients so I went in yesterday for one of the symptoms and she asked how I was dealing with my cushings syndrome. 

 

I was a bit surprised, after all I was not Dx with cushings.  SHe started listing the list of symptoms and every single one of the issues I have been dealing with for the last 2 years is on that list, all of them.  She pointed a few telltale things like saying "your arms are not fat but your belly is, and you have a hump"  Now let's be clear, if I have a hump it is minimal lol I checked.  Anyway, she said she would bet her job on me having cushings and booked an appt for next week for a full physical and will have the paperwork ready for testing so she can send me to an endo.  She said the dr last year never did a 24 hr cortisol, which is the test needed, the one last year only checked the levels first thing in the morning, also she said that most cases of cushings are caused by a tumor on the pituitary not the adrenals so the dr last year checked the wrong anatomy.

 

Now weirdly my sister had a pituitary tumor a few years ago, hers was a prolactinoma, and made prolactin(which I found ironic since she refused to bf my nephew from day one because she didn't want her bOOks ruined by stretching from breast milk, and yet she lactated for 3 years while under going treatment).  The Dr said the prolactinoma is treated differently than the ademona that causes cushings but didn't elaborate.  Sister took a pill for a long time to shrink the tumor out of existance.  EVerything I have read thus far says with cushings you need surgery to remove the adenoma.  But I am looking to hear from anyone else that has had to deal with cushings to see how it was treated.

 

Until testing is done and results confirmed I am not going to worry much about it but do feel better when I have as much knowledge as necessary.

[Momof3littles]

You can have PCOS without cysts, fwiw. There's currently debate within the endo community about changing the entire name for PCOS partially due to that. IME, many doctors, especially regular OB/GYNs and GPs really aren't up to date on the diagnostic criteria.

 

It is good you are getting the 24 hour test.

[swellmomma]

Well that is not something I have heard of.  I guess that is something for the endo to decide when I get that appt.  The dr yesterday is sure it is cushings because of the long list of symptoms, most of those don't match up with pcos, the only thing that matched pcos was the male hormones.  Not the area of weight gain, not the hump, not the patches of skin turning brown, or the speckles of dilated capillaries, or the depression/irritability, or the extreme fatigue, or the headaches etc.  It is a long laundry list of issues that drove me to get seen last year and then I was basically blown off, the increase in hair growth is what had me go back this year.  I did not know all the rest could be connected, to me I was simply falling apart, and everything was disconnected from each other kwim.  I would love for the endo to say it is pcos without the cysts, which sounds weird, since the main thing of pcos is the multiple cysts and I had zero.  BUT that would be the best thing to hear honestly.  I have to do more research into that and see what I dig up about pcos without cysts.