Symptoms prior to diagnosis: hump, moon face, 40 lb weight gain (April 2004- Dec 2006) in 2.5 yrs (mostly through midsection in the last 6-9 months before diagnosis). difficulty losing weigh (and then continually gaining in Fall of 2006) despite working out 6 days/wk and eating 1200 cal/day, SEVERE bruising, "acne" face breakouts, increased facial hair, fatigue, mood swings, night sweats, extreme temperature changes during daytime hours (hot then cold), decreased grip strength (frequently drop things), overall decreased core strength despite lifting weights and active job as physical therapist, poor sex drive, no periods (even when on the pill)
All of my problems began my sophmore year in high school (Spring of 1992). I got a terrible sinus infection and my asthma got really bad and I could barely walk 10 feet without huffing and puffing. One of my eardrums ruptured and I had an ear infection. The doctor prescribed Prednisone. I don't recall how much or how many rounds I took, but all I know is, is that I gained about 30lbs in 3 months....not such a great thing, when you are active in Basketball, Track, Cheerleading and gymnastics! From that point on I struggled with my weight. I'm not sure at what point my adrenal tumor began to grow, and I have no idea if it is related to taking the Prednisone in high school. My personal theory is that my body liked the steroids and so when I stopped taking them orally that my body decided to slowly begin to produce its own supply by growing an adrenal tumor that overproduced cortisol.......I'm sure the doctors would disagree with me.
Highest weight: 190 lbs (185 the morning of surgery but climbed to 190 a few days after surgery). I was a size 14 or so.
Lowest weight: 144 lbs for my wedding in April 2004. I was a size 4 or 6 depending on what it was. (keep in mind however in January 2004 I weighed about 170 lbs--I think that God answered my prayers and let me be skinny for my wedding.!) Prior to the Prednisone in high school I weighed about 130lbs.
I started having terrible acne in the Fall of 2003 (the worst complexion I had ever had) , and my severe bruising began in 2002. My husband and I race sailboats and I refused to sail for 3 months prior to our wedding because I knew that I would be bruised and they would show up in my wedding photos...I knew this brusising wasn't normal but no one could explain it. My other big complaint was the night sweats. They started sometime in 2002. Some nights it was so bad, that one night I woke up and thought I had wet the bed everything was so wet with sweat...about 10 pm every evening I began to "radiate" heat-so much that my husband wouldn't even sit next to me. I told one Dr. about it and she checked my thyroid which was OK so she dismissed it. I also sought out help for IBS--I was usually extremely constipated and had HORRIBLE bloating and TERRIBLE gas. I would sometimes go 4-6 days without having my bowels move. My weight could fluctuate 3-6 lbs in ONE day depending on my potty habits. My fluid balance was definitely messed up. I could go on and on about all of the weird things that gradually I started to notice, but there isn't room for that....Finally after much complaining to my PCP about my weight issues and my bruising that was only getting worse he told me "If YOU feel that something is wrong, then something probably is" and we began to investigate. He thought I probably had PCOS......here is the rest of the journey:
11/2/06: PCP begins investigation for possible PCOS/"Cushing" type symptoms with blood tests and 24 hr urine. Blood work showed slightly elevated liver enzymes; testosterone = 110 NG/DL (norm female=14-76); UF cortisol= 117.1 (norm=< 45.0 ug/d).
11/9/06: Transvaginal Ultrasound to check for cysts on ovaries and Abdominal Ultrasound to check liver since enzymes were elevated....NO evidence of Polycystic Ovary Syndrome (PCOS) but did find a 2.7cm liver mass.
11/14/06: CT scan of abdomen/pelvis: showed 10mm liver lesion, most likely an arterial venous malformation (AVM); multiple liver low density lesions, most likely cysts; bilateral iliac bone lytic lesions, most likely hemangiomata in the abcense of a primary malignancy;Right adrenal gland mass 2.8 cm, noncontrast Houndsfield units are atypical for an adrenal adenoma, however percent washout is 77.4% compatible with a benign adrenal mass (HU= 32 on pre-contrast, HU= 51 on delayed phase)
12/1/06: Endo initial consultation: orders baseline ACTH and cortisol blood tests today; orders dex test for 12/4
ACTH <5 pg/mL (norm= 5-27); cortisol 8 am range 15.2 mcg/dL (norm= 4-22)
12/4/06: 1mg dexamethasone suppression test: I did not suppress!
cortisol was 14.6 (normal people suppress to <1.8)
12/8/06: Endo called me with results from 12/1 and 12/4. Gives me official "Adrenal Cushing's" diagnosis and refers me directly to an adrenal surgeon to schedule an adrenalectomy
12/14/06: surgeon consultation: scheduled Right Adrenalectomy for 12/21/06
12/21/06: Right Laproscopic Adrenalectomy went smoothly! Only 1 night in hospital. No PCA, didn't take any oral Vicodin until bedtime to help me sleep...My surgeon is awesome! (pathology report states tumor is benign!)
1/27/07: Have tapered down to 15mg/daily hydrocortisone (Cortef), taken 10/5mg; Feel very sluggish/lethargic most days...when "low" have headaches, nausea, dizziness. Started taking Wellbutrin for depression a few weeks ago--this withdrawl/tapering sucks!
3/6/07: am cortisol= 0.6 (norm 4.0-22.0) so my remaining Left adrenal is basically doing nothing. Had tapered myself down to 7.5 mg Cortef (and felt like HELL) but when my endo got this blood test result she made me increase my dosage to a minimum of 12.5 to 15 mg until my next blood test.
4/6/07: Have lost about 13 lbs on the scale. My "hump" is gone. My 'moon' face appearance is mostly gone as is my "waddle" or double chin. My abdomen has thinned out tremendously. I am currently on 12.5 mg Cortef (10/2.5). Still feel VERY lethargic, but do go to work 5-6 days a week and work out with a trainer 2 times/week. My acne is still a problem, my bruising is improving (it isn't as severe as it used to be when it does occur)
4/25/07: am cortisol= 1.2 (norm 4.0-22.0); changed Cortef to 7.5/5.0 mg but still total of 12.5mg
6/12/07: Repeat CT scan reveals: 3.5 cm Right Iliac & 2.0 cm Left Iliac lytic lesions adjacent to the SI joints which may represent hemangiomata in the absence of a primary malignancy; Right Hepatic 15 mm hyperenhancing lesion, likely an Arterial Venous malformation but increased from 10mm on prior exam; Left Hepatic 12 mm, Right Hepatic 12mm, and Right Hepatic 5mm low-density lesions, likely cysts, however lesions are increased in size from prior study . I will have another study in December to try to figure out if they are continuing to grow and if so, what exactly they are.
6/20/07: am cortisol= 2.6 (norm 4.0-22.0); Complete metabolic panel is all "in range" (liver enzymes are no longer elevated); still taking 12.5mg Cortef (7.5/5.0); acne is gone, bruising still occurs but has improved.
Have lost 20 lbs on scale-almost all of abdominal fat that was gained is gone.
8/18/07: Have lost 26 lbs since adrenalectomy (still need to lose another 20 lbs to get to my lowest weight in the recent past before my full-blown Cushings). Taking am 5mg Cortef and am tolerating it without nausea, decent BP and without too many aches/pains (prior to about 2 weeks ago my hands/feet hurt REALLY bad). My face continues to thin. No facial blemishes (not even when pre-menstral). Bruising still occurs but is improving. Consistent 32 day cycle with 7-8 day periods (yuck).
If anyone has any questions feel free to email or message me....I know how scary it can be when someone can't figure out what is wrong with you and you KNOW you are not crazy!
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