And It's About Time There Was Some Support For Cushing's!
This could be a long story, since I think it started when I was & years old and I am now 57. But, here goes. let me know if you would like to use me on the radio show. I think it's great.
When I was 7 years old, I was very fatigued and started to get Alopecia Areata. I was at times Chubbie in the belly and had a round face at times too. I also became anemic on and off during my childhood. The Doctors could not figure out why I was anemic, they said that if I was menstruating and it was heavy they could understand. They had also checked me to see if I was bleeding internally. This would all happen on and off every few years until I was 50.
I don't want to get too ahead of myself here, and will explain the teen years and 20's to you also. My teens were pretty much the same, but in my 20's I had my first child. I was 21. Right after I had him, I was asked if I was going to nurse. I said no (at that time women never really nursed) I was given the medicine to dry up your milk. I went home, and over night my breast began to swell. They were ready to pop. I called the Doc and they had to give a repeat round of the meds. I think this was connected to Cushing's. Also after child birth, I was heavy and I had fine red stretch marks on my calves and belly. I just thought it was from having the baby. It could have been the cushings.
During my youth through my teens, I remember my Mom saying things to me that now makes sense to me. Sit up straight you look like you are hunched. (from Cushing's hump??) Or your face is red.. you must be telling a lie... your face only turns red when you lie. (I could never figure this out as a child, it came to me this year). I was not lying . Oh and then..... Your getting fat, you better stop eating so much.....now you have to remember my Mom used to sit at the table and force us to finish our food. Then I started to gain weight and she begged me to stop eating so much. I was eating the same amount. It all makes sense now.
My 30's were pretty uneventful, just a few spots of Alopecia and anemia at times. I was hospitalized for female problems and had surgery for cysts on my ovary's Then I had a tubal pregnancy at 40. All of these years my weight had gone up and down with my highest weight about 152. I would starve at times to keep that weight. I just thought it was the way I was. Oh and I had an emergency surgery for a huge ( large cantaloupe) ovarian cyst , they also found endometriosis at the same time, both common with Cushing's.
Fast forward to 50 years old and things just started to get worse. In 1999 I became more fatigued. I complained to my PCP about the fatigue. he checked my thyroid but it came back in the normal range. I suffered for another year. My hair became very brittle, and started to fall out more then it ever did. I went back complaining again. They tested my thyroid again. It came out a little low. (Hypo) I complained about my joint pain and the weakness in my legs. He told me he wanted to wait one month and check it again. One month goes by and they check my thyroid again and this time it is Hyper. So he says Hummm You mush have hashimotos thyroid disease, because your thyroid was low then high, and your antibodies are 1644, That is high, so I will, give you thyroid meds and be off with yourself. check you again in one month okie dokie. But I complained again and again about my joint pain, I had sores in my nose...He actually asked me if I was doing cocaine.. I was humiliated. I did some research at that time and I thought I had Lupus. I went back to PCP and told him that. He kind of rolled his eyes, and sent me to a rhumetologist. She thought I might have a mild case of Discoid lupus, and fibromyalgia. OK... Still nothing making me feel better...except in between I would have good days and sometimes weeks
The PCP could never regulate my thyroid meds right, so he sent me to an Endocrinologist. She changed my meds. I was getting larger every month despite weight watcher and running 3 miles 7 days per week. From the running I got a stress fracture, but was treated for months before diagnosis (stress fracture) by a physical therapist for shin splints..... after 6 months they discover the stress fracture........... Still getting fatter and balder.. I went back to PCP... he ran more tests and this time they thought I had hep B....It came back inconclusive..so they needed to run more tests. After these tests it was ruled out and I never had this.
So you get the gist of things here right? back and forth and back and forth to Doctors all of the time. each time thinking that this is the time they are going to fix me.
So now it is maybe 2003. I was a member of About.com for thyroid conditions. I wrote a post asking if anyone could help figure out why they Doctors could never regulate my thyroid meds. I posted all of my labs and wrote a little history. I got a few answers, but one stuck out... It was from a woman (can't remember her name now, Cushie Memory) She told me that all of my lab work and my symptoms look like I have a thing called cyclic Cushing's. She told me about the Cushings-help.com web site. She also told me about Dr Ludlam and how he would give me a phone consultation. She said to call him and pick his brain. I didn't call yet, because I was thinking that the local Docs could fix me up.
The first time I went on the web site....I sat there and read with my jaw hanging almost to my lap. In my mind I could hear myself saying OMG this is me....I have this... this is me OMG it went on and on as I read the stories.
So now I have ammunition (I thought) I had been researching my symptoms and I come up with Addison's or Cushing's disease. I made another appointment with my PCP. I thought for sure this was going to be it.. They will fix me now. I brought Data with me, I told him how when your TSH is hyper , and your free T4 is also low, it means a pituitary disorder. I proceeded to tell him, I wasn't sure if I had Addis sons disease or Cushing's disease. He looked at me and I will never forget this. he said " If your house was on fire could you get out" I said " yes ,'he said to me " you don't have Addison's ,If you had a pituitary condition you would be very very sick." I sad I am sick. He then told me I read too much online. Don't believe everything you read. To give me the benefit of the doubt he sent me back to the Endo. She told me the same thing, only testing my thyroid and changing the meds once again.
Because I took very good care of myself, and I dieted constantly and you may as well say starve myself at times, also 6 miles of walking every day. ( after stress fracture I could not run anymore. I looked OK on the outside. Only the Alopecia was apparent. The Doctors just thought I was a hypochondriac.
I had never felt so alone.. no one will listed to me.. I was getting sicker and sicker. Little did I know , but now I was cycling often . My sleep was very disturbed, I was getting sleep in 10 minute amounts, finally getting up at 4am because I couldn't stand it anymore. At 8am I was falling asleep, I didn't have the strength to walk up stairs without feeling like I would fall backwards. At 10am Bingggggggggg a bell would go off in me and I was wide awake. Then at 2pm I would be fatigued again. 5 or 6 pm I would wake up again, and feel ok, 8pm I could hardly move, to the couch I went. Bed at 10pm , I would sleep 2 hours and wake up and midnight, bright eyed and bushy tailed raring to go. I would make myself try to sleep again,only to wake every 10-15 minutes, finally getting fed up at 4am, and I would get up and walk 6 miles in 1 hour and 20 minutes.. and the day would start again. Same thing day in and day out. Occasionally I would just be in a low and have to do nothing for the entire day. In pain and nausea all day.
So now it is January 2004 I went to my Gynecologist and she noticed how fatigued I looked. I told her the story. She knows me well, and could see the changes. She told me about her friend Lauralee Shoenbeck(spelling) She is a very smart Naturopath maybe she could run some tests for me. This woman had written Books on women, hormones and natural medicine. She is good.
The day I went to the Naturopath I now know I was in a cycle. I was aching from head to toe and my blood pressure was very high. I was sitting in her office and she took it, it was 180/90. Alarmed she took it standing too. I do not remember the results of that. She sent me home with a 24 hour saliva test. She also drew some blood. She did an IGF-1 test and some others, The tests came back,with a loss of diurnal rhythm and a very low IGF. This only confirmed what I knew about Cushing's from the web site. She told me that I was headed for an adrenal crisis. So back to the PCP I go.
I sat in the PCP's office and was afraid of what he would say to me this time. I was nervous. He came in the door and I proceeded to tell him what the Naturopath said. He told me to stop reading on the computer and said" You should just learn to live with my symptoms and get on with my life." For the benefit of the doubt he again sent me back to the Endo.. Oh I forgot to mention that My hair was so thin I would wear hats now.
Before I went to the local Endo I sat down ,I faxed my results and wrote a huge letter to Dr L asking for a phone appointment. Everything was faxed I was waiting for an appointment.
Here I sit in the local Endos office. I showed her the results from the Naturopath. She looked at the IGF-1 and said I will give you a stim test. Okie dokie I thought to myself.. I'm on the right path now.
She set up an appointment for the GH stim test. I had the test and the results came back that I was GH deficient. I was given Growth hormone injections, In the meantime Dr L's office responded to me letter. I disregarded it, because I thought surely I am going to get better now. I would be ok now.
At first things felt a little better on the GH. I started to take it in July of 04. It was November 04, since July 04, my hair had continued to fall out. I had to buy a wig in October. I went back to the endo, with the Cushing's complaint again, She just looked at me and told me that I couldn't;t have it. It was too rare. I pulled off my wig. What I had was a Genetic problem... you see I'm Italian. Italians I suspect are all fat in the middle as they age and they go bald too. At that point.. I just knew to be quiet and let her talk. When she was done, I quietly left. I got in my car, and the tears started to pour. I cried for the 14 miles home. I got home and took out the phone number for Dr L's office. I called, and explained I would fax everything again. . I got a call back from the girls in the office and set up a time.
The phone appointment was in December 04. I was so nervous...after all I had been shunned by all of my local docs, except for my Gyno. I shook as I answered the phone. He began to speak, he was a nice man I thought. But then after about of 10 minutes he said the words I had been waiting to hear for 5 years now. he said " I think you may have Cyclic Cushing's. I couldn't believe my ears. He said he offers a 5 day course of testing, but I didn't have to go out there I could test with Docs at home, either way he thought I should test. OMG I thought. It took an instant for me to say I want to come there. Why should I waste anymore time testing at home??? I made the appointment . I told my husband (cause he was thinking I was going nuts too) that I had to go there for my own peace of mind. If he also said I did not have a pituitary disease I would stop searching and just live with what every was bothering me.
It took me a whole year of testing to prove the disease, but on my first trip I was validated , I had some high midnights and my diurnal rhythm was off. I had one surgery in January of 06 , I crashed hard, it was thought I was cured, and for a while I felt it. In November of 06 I knew it was back. It was confirmed in June 07.
I was sitting in Dr L's office with the thought of just having a BLA and getting it all over with. He walked in the door and said what were you thinking of doing. I said a BLA, then I asked him If I was his Mom or Sister what would he recommend ? He said to me "a second pit surgery. I saw this because, I know it is a 50% chance or a little greater of a cure with the second surgery, but people do get cured. If you get a cure , it is much better then spending the rest of you life with Addison's, You will always wonder if you would have been cured with a second pit." Well , Those words struck a cord with me and I decided that an investment of an extra 6 months of my life, would be well worth the gamble. If I later need a BLA, I will always know I tried with a second pit surgery With my first surgery I have some complications. After I was re;leased from the hospital I had an electrolyte crash. At that time I had seizures (2) and was re-hospitalized for a week. Once home I was in and out of the ER for the same. Taking 300mg of hydro in order to keep my electrolytes steady. Once they were stable I was able to do a rapid wean. Surgery was on January 9th , 06 and I was off steroids by July 06. I was losing weight and was finally at a 30lb loss when I suddenly stopped losing. I had noticed the return of the red face and the hot flashes. Also the sleep issues were back. I went back to dieting and didn't lose a pound. It was November 06, I knew it was back. I discussed this with my Doc, and we were going to be hopeful at first that my body still had to adjust. By January 07 I knew it could be nothing more then a return of Cushing's.
Now it is April 07 and I returned to Seattle for testing. It is confirmed that maybe something is going on. I went home and returned to Seattle in June 07 I was going to stay there and test until I got some higher numbers. On the very first night I got a 125 ACTH. This was good enough for my Doc. It was back.
I went into Surgery the second time on July 12th , 07. After my surgery the Surgeon was not sure about it, he thought that maybe I would need a BLA. As the hours flew by I was growing more agitated, and I was having severe symptoms of cortisol crash. Dr L came in and gave me my Hydro, because of that, and he went out to see that my numbers had fallen to almost 0. It was a cure in his mind. I also I was re hospitalized with a CFS leak with this surgery. I was in ICU with that for one week.
I have remained optimistic that I am cured. I hate to use the word though, because I think once I say it Cushing's will come back. My last two check up's my adrenals would not stimulate. my stim numbers were on the first trip 0.2 baseline cortisol, and 1.7 stim number. for the second check up just done on January 5th 08 my baseline was 0.1 and stimmed to 1.3. I have to remain on replacement cortisol until it comes up to 18 or 20 in the am. They are very optimistic that I am cured now, even using the word . I remain, cautious and almost feel that once I say I'm cured it may come back.
Nasty disease, it sucks.
I told you it would be long... sorry,
Thanks for listening,
Karen N
Karen was interviewed in an online Voice Chat February 21, 2008. Her interview will conclude March 20, 2008 at 7:30PM eastern Archives will be available after the chat.
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