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My doc thinks I have Cyclic Cushing's.

Guest Mugu


Hello everyone. I'm a 17 year old girl. My height is approximately 5' 7" and my weight is approximately 115 kgs. I was born through caesarian section (birth weight: 3.1 kg) with flawless, fair skin. Till I was about 7/8 years old, I was rather underweight. I started gaining weight at around 11 years old, and I notice now, that my abdomen and face were much fatter than my hands and legs. At the same time, my complexion started to get quiet dark. I had my first menstrual cycle at the age of 12 years and 10 months. For 2 years, the cycle was normal but I kept on gaining excessive weight, despite being physically very active. Everyday, I'd go for Basketball in the mornings and for swimming & lawn tennis in the evenings. Also, I am a vegetarian, with fairly healthy eating habits. At this time, I got my thyroid tested but all my tests were inconclusive. At 15, my height and my weight were both plummeting. My menstrual cycle became very irregular. I would miss a cycle and the next one would not stop for days on end (sometimes even 2 months!). I have stretch marks all over my body, initially they were reddish, now they're white. My symptoms include:

1) Unexplained weight gain

2) Pigmentation

3) Irregular periods

4) Hair Loss (dry and brittle hair)

5) Excessive (and painful) acne

6) Excessive hair growth on the arms and legs.

7) Intolerance to heat

8) Excessive sweating

9) Excessive thirst

10) Excessive urination

11) Hypertension

12) High blood glucose (This symptom has come up recently)

13) Aching joints (hip, shoulders, and lower back)

14) White striae (all over my stomach, chest, back, shoulders and arms)

15) Gastrointestinal disturbances

16) Severe headaches

17) Myopia (blurred vision)

18) Anxiety

19) Fatigue

20) Depression

21) Insomnia

22) Brittle nails

The reason I'm writing to you- is pure frustration. I have remained un-diagnosed for way too long, and it's getting to me. I'm in the the 12th grade, but it's becoming harder and harder for me to focus on my studies, with a host of new problems piling up on me everyday. I have had the misfortune of meeting a lot incompetent doctors- all of whom blame my symptoms on my weight-- failing to understand that my weight is ONE of my symptoms and not the CAUSE of my other symptoms. I decided to take matters into my own hands and started my research. As of now, I'm fairly positive that I have Cushing's Syndrome- all my symptoms seem to be explained by it. That's how I found your website. About 10 days ago, my doctors checked my Cortisol at 8AM and 4PM- the latter was higher than the reference range (also, the timings at which they were taken, is usually when I'm asleep- I'm practically up all night and wake up in the afternoon: My sleep pattern is reversed: This means that my cortisol should have been very low at that time, but it was quite high) So then I had a low-dose dexamethasonesuppression test- but it turned out "normal". My doc now believes I may have Cyclic Cushing's. So this week, tomorrow- They'll check my Cortisol at 8AM and 4PM, then day after, another low-dose dexamethasonesuppression test and then 2 days after that, at 11PM- they'll check my cortisol and ACTH. I know that Cyclic Cushing's is hard to diagnose because the tumor can sometimes become "inactive" so that it releases less cortisol at certain times and this can fool blood tests into coming out negative. I was wondering if there is anyone out here who has Cyclic Cushing's? Also, if reports keep coming out negative, will an MRI that reveals a tumor on my pituitary or adrenals be enough to diagnose me? Honestly, any kind of advice (or even a word of hope) will help!!

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I was just diagnosed with cyclic Cushings. Just having a pituitary tumor isn't enough for diagnosis. You will need multiple high lab results. If at first you get low or normal cortisol results, keep testing! My first test was normal and my first endocrinologist congratulated and dismissed me. After I begged for a second test, it was extremely high. At that point, he didn't know what to do, and just blew it off as a fluke. I ended up traveling to an Cushing's expert in California to resume testing. In my case, I only needed to complete 7-10 more tests because the vast majority of them came back very high. But I know from reading posts on this site, however, that it can take longer to get diagnosed. If your first round of tests is low or normal, ask for more tests. If you truly suspect cyclic Cushings, you owe it to yourself to test thoroughly enough to rule it in or out. Best of luck to you!



Oh, and I forgot to say: You might also want to read about growth hormone deficiency and thyroid problems. Some folks here get diagnosed with these instead of OR in addition to Cushings. Hope this helps!

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Thank you Bernice for your prompt response!! My doctor (and I most definitely) suspect Cushing's and hence I will be getting more (cortisol and ACTH) blood tests and now also a 24 hour urine test. Hopefully I will get my diagnosis at the earliest. Did you go to Dr. F. in California??

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