And It's About Time There Was Some Support For Cushing's!
Hello everyone!! My name is Kathie McConnell.
I am 26 years old and recently diagnosed with Cushing's syndrome. I am scheduled to have an MRI next Monday (October 22, 2002) of my adrenals. The doctors believe that is where the problem lies because I have had a head MRI and it showed nothing on my pituitary. So pending the results , I'm probably on my way to adrenal surgery.
Anyways, that's where I'm at currently. But let me give you my story from the beginning.
I think it all started after the birth of my second child. She was born April 11 of 2000. I never got my period back on my own. I breast fed her for about 6 months, and I know it takes a while for your body to get back on track so I guess I didn't give it much thought. I don't remember specifically when but it was at a check up with my ob/gyn that I mentioned not ever getting my period back and so he gave me so progesterone pills to bring on a period. Which of course it did. Then the next month nothing happened again.
I was thinking maybe taking the progesterone would just kick start my body back to normal but it didn't. my ob/gyn pretty much just said to take the progesterone every 90 days or something like that to give me a period because it's not "healthy" to go with out a period for 3 months. He did order a few blood tests on my thyroid and blood sugar but I was told everything was normal, and my ovaries were just being "lazy", taking a break. I was a little put off by his comments, but I waited some more thinking he's the doc. He knows more than me. So I waited another month, still no period. I would call the office and speak to the nurses, who were so much more helpful than my dr. anyway. I told them something's not right here.
I'm only 25 years old. My mother had 7 healthy children. I should be having periods. I'm not going to take drugs to make me do something that for some reason my body isn't doing on it's own. I needed to know "Why" so they said you can come back in and see my dr. again and talk to him about it or we can refer you to a endocrinologist. So I chose the later.
In the meantime during this probably year and a half I was the workout/ diet queen. I had put on a lot of weight with my pregnancy and was desperate to get it off. I lost it easily with my first pregnancy. I went almost down to my prepregnancy weight by the time he was 10 months and I didn't exercise or really diet at all with him. So it was and has been very frustrating trying so hard and getting no where with my weight loss. I actually would loose a few pounds here and there. I definitely maintained my weight if anything with all the exercising and watching what I ate. I was not gaining more but not really loosing. It was annoying too because If I did loose weight it was everywhere but in the middle, and in my face and neck, and I couldn't see my shoulder bones which used to be so sexy before. So, being so fed up with this, I actually turned to plastic surgery. Yes, I had a tummy tuck on April 23, 2002. It hasn't even been six months yet. I guess that surgery is a whole other story though.
Anyways I went to the endo. and told him my whole story. He took an ultrasound of my ovaries and sent me for some blood work, but pretty much diagnosed me PCOS. Which as most of us know the symptoms of PCOS and Cushing's are pretty much the same except for the cortisol. Which my endo never tested the first time around. So he sent me home with prescriptions for like 2 different drugs and birth control pills. I wasn't to thrilled with the whole idea of taking these drugs for pretty much the rest of my life. especially the birth control, because my husband an I are done having kids. But I was told it helps control a lot of the other symptoms to like possibly my extra hair growth and acne that never went away either with my second pregnancy and did with my first. OH, did I also mention my hair turned darker and curly and extra frizzy during all this.
It's funny so many of these symptoms I never thought twice about because I said to myself your older this pregnancy, your had a girl this pregnancy, your body just reacted different this time around. Little did I know. Anyways, I never did star taking any of the prescriptions I was sent home with because he sent me to have an MRI because my prolactin level came back a little high. So on my next visit with him I got the results of the MRI and the were normal.
In the meantime, before this second visit I had been to my plastic surgeon for a follow up visit and I was healing up just fine but had gotten all new stretch marks. He just couldn't get over it. He said I must have extremely thin skin, and that this stretching wasn't normal. He felt bad for me considering alot of people have tummy tucks just to get rid of there stretch marks and here I was with a whole new set of them. Although it didn't bother me, (the scars) because that wasn't why I had the surgery. He did then mention the word cortisol and said that high levels of it could cause thinning of the skin, and started to kinda look me up and down, and said you may have what is called Cushing's disease. I then told him about how I was seeing this endo about the fact that I wasn't having periods, and that he said I was PCOS. He was like well I would mention the cortisol the next time you see him.
Soo, that's what I did after he said the MRI was fine, and wanted to send me home with the prescriptions AGAIN. He said He would test my blood for the cortisol since the other test he could do involved me collecting my urine for 24 hours and he didn't think I would enjoy that to much. I was happy with that and went home. Then they called with the blood cortisol results and they were high. So, guess what? Yes I did the 24 hr urine test and it came back in the 500's. He then ordered another one along with ACTH. This time it came back in the 600's and my ACTH was a 5 which was within normal range.
So that pretty much brings me to where I am now. I just moved to Pennsylvania on Oct. 7 from Dayton Ohio. I saw my new endo just two days ago. It was funny. I walked in there, and a med student took my history before the doc came in. She had already seen my records and everything, but took one look at me and knew I was Cushing's. When the dr. himself came in he to said I was making his job too easy. I was classic textbook Cushing's and asked if he could bring in another student of his who hadn't seen any info on me, and I told him that was fine. He walked in and of course the doc said what do your think? and he said Cushing's. I kinda got a laugh out of it all and was glad I could be of assistance. I had my new endo lined up before I even moved here. Its kinda lucky that I've moved close to Philly because my old endo who was actually a reproductive endocrinologist, said that in Dayton there is actually a shortage of medical endocrinologists. Also my husband's from New York and some friends of his family actually got me in with this dr. I am currently seeing. and right away. It's always about who you know HUH?
Well that's my story, and it's not over by far. I'm sure the hardest part is yet to come. and I do feel myself getting sicker everyday. I haven't been taking care of myself to well lately. I've been sad leaving my friends and family behind. We moved because my husband got a great job opportunity here. Plus now he's closer to home. It's just I lived in Ohio my whole life and this is totally new to me. I'm excited yet scared. and it definitely doesn't make it any easier being sick. I haven't worked out for about two months now since I've been doing all the packing and unpacking and everything that goes along with the move. and I definitely haven't been watching what I eat. and let me tell ya I've probably gained 6-7 pounds and all around my middle. so much for the tummy tuck huh? If I would of known I was Cushing's I would have never had it done.
But the ironic thing is, that I probably have my plastic surgeon to thank for in a way saving my life. because I had never heard of cortisol before and my endo pretty much had me diagnosed PCOS and out the door. Isn't it funny how some things turn out. I hope that it turns out next week that it is what they think, my adrenals and I get scheduled for surgery and begin my road back to my old self. Thanks for reading my story and hopefully I'll be back to tell you all of good news. I have been visiting this site for a while now and finally thought it was time to add my story. I also know now that no matter how strong and tuff I think I am. I can't get through this on my own, and It's nice to know I can come here, and be with people who are in the same boat and understand and support. especially now that my support system if 8 hours away. I know I have my husbands family close. but it just isn't the same.
Anyways Thanks again for this great website. I'll be back!!!!!
LOVE and PRAYERS TO ALL!!!!! KATHIE
