Cushing's Syndrome Support Group

Cushing's syndrome is an endocrine disorder caused by excessive levels of the endogenous corticosteroid hormone cortisol. Symptoms include rapid weight gain, atrophy of the skin (which gets thin and bruises easily) and others. Patients frequently suffer various psychological disturbances as well. Join the community to get support and find others who know what you're going...

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soccergirl78 01/20/2014

I was told at age 13 I had PCOS and was put on birth control. My mom tells me now that I didn't even have my period then she just had to take me in b/c I continued to complain of a stomach pain and I was red and splotchy in the face. (never ran high temps just low grade). To this day I only had one cyst... and never had the symptoms to my knowledge of PCOS.

I do have:

Red splotchy cheeks/ sometimes the rash on my skin under my eyes feels like it is raised small bumps.

if I go out side in the sun, I am completely drained and the rash and is even worse and it I look like I am really sunburnt badly!

I stay tired all the time.

I carry my weight in my stomach and have horribly stretch marks that are purple all over my stomach and now are going into my armpits and into my chest area. Its embarrassing my bc I do not carry any weight in my arms or my legs they are in shape.

I eat so healthy and watch everything but nothing seems to help! Im becoming frustrated by the day. I just got dx with Pseudotumor cerebri last week and saw that sometime people who have pseudotumor cerebri may also have cushings...

Any info is greatly appreciated.

Thanks in advance.

BDen13 01/21/2014

Cushing's is commonly misdiagnosed as PCOS and you have some symptoms that are consistent with cushing's. Unfortunately, to get diagnosed and treated for cushing's most people have to see a cushing's specialist as even most endocrinologists are not skilled enough to diagnose or treat it and there are only a handful of cushing's specialists in the country.

soccergirl78 01/21/2014

Thank you BDen for reading my post. my annual follow up appointment to see my endo is coming up in Feb. Last time I saw her she said well, I am her to encourage you to lose weight. I paid her to co-pay to hear that when I have family and friends that support me each and every day but we don't see improvement at all but I am strict as can be on my self.

At this point I am at a lost as to what to do. I want to ask her to check cushings. Not sure that she will. And I don't know if there is a specialist near me. My back up plan is to ask my neurologist for help. He is such an amazing doctor that if she doesn't help he may be on my side and read up on it and refer me to someone.

I'm sorry at this point --- Im just venting now.

soccergirl78 01/21/2014

question, with cushings can your blood sugar run low and then come to normal range after you eat? Mine drops all the time and comes up when I eat.

And my blood pressure runs low and in stressful situations it spikes and comes down...

BDen13 01/21/2014

Cushing's can cause insulin resistance. It manifests differently in different people.

Honestly to get a diagnosis you're probably going to have to travel. I'm not aware of any cushing's specialists in the entire state of Texas.

soccergirl78 01/21/2014

Thank you again BDen. Just want to live a normal life of someone in their 20s! And doctors have no answers but this board seems to have more answers and more advice. :)

soccergirl78 01/21/2014

is cortisol levels checked regularly when they check complete blood count or when do they check our cortisol levels. Do I specifically have to ask them to check this. Im asking because I have some records I can go back and look at and see what my cortisol levels have been running if its something they check on a normal basis.

BDen13 01/21/2014

No, cortisol is not routinely checked with blood panels and in fact, checking blood cortisol during the day is pretty meaningless. People with cushing's primarily only have elevated cortisol levels at night. The best tests to diagnose cushing's are the 24 hour urinary free cortisol, midnight salivary cortisol, and midnight serum cortisol.

deleted_user 02/27/2014

i was also wrongly diagnosed with PCOS - now seeing a specialist for cushings - I must say- its daunting and scary - and a lonely feeling as there isnt much info or support here in RSA

deleted_user 02/27/2014

:) anyone from SA?

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