And It's About Time There Was Some Support For Cushing's!
I've never really been well all my life. When I was in my mid 20's I started noticing symptoms of extreme fatigue although I'd always been one who liked to sleep. This fatigue was getting worse though. I was cold, my stomach never felt well, bleeding rectally, emotional. I would be pale too.
I also started gaining weight. I'm tall so no one really noticed when I reached 160lbs up from 140. During this time I was going from doctor to doctor and was told it was all stress. What stress? I single, no bills, and earned decent money. I was never alone on weekends with friends and always had a date. The thing that filled my life the most though was Jesus Christ. He gave me a contentment and joy that nothing else in this world could give me. Where was the depression here?
I married when I was 28 and had my first child 9 months and 120 lbs. later. I thought I could lose the weight but upon trying it wouldn't come off. So, 3 months after I had my first child I went to the doctor and was finally diagnosed with hypothyroidism. This explained a lot of the way the things I had experienced in the past. I started to lose weight but became pregnant with my 2nd child after losing 1/2 the weight. By the way, I gained 40 lbs. of water with each pregnancy along with the fat weight. I didn't get gestational diabetes with any of them either. I again trekked out to lose weight and had to have my medication raised again. This happened a few times over the next 5 years. I exercised all the time but couldn't lose those last nasty 60 lbs. I became pregnant during this time with the 3rd child. My first 4 months of pregnancy were awful - I turned green from the nausea!! While I didn't lose any weight this time (as with the others) I didn't gain any either. I thought this pregnancy would be different. Well, it was, I was awake all the time until 2am then would wake again at 6am and would remain awake all day. I was full of energy with this kid! My weight was coming on slowly like it should when you're "normal". Then it hit, the last 3 months of the pregnancy the weight hit me faster than a speeding bullet and I went up to 300 lbs. again!! 40 of it was water though. After 2 c-sections, I did a v-back birth to yet another healthy baby boy!
After this baby, I had even a more difficult time getting rid of the weight. This time there were dizzy spells and more Synthroid had to be added to my daily regime. I was so exhausted all the time. We moved to another area. Around this time I started to wean the baby because I wanted to start losing weight again. The weight was coming off without me really trying. I thought it was fantastic but I was still tired. I went to the doctor again and had Cytomel added to my thyroid treatment. The weight was coming off steadily but I got stuck at around 230. Started the low carb diet and the weight just fell off! I was perspiring again too! I slept a lot the first 2 weeks and just thought my body was "detoxing" from sugar and flour. My hair grew back in on my head and stopped growing on my face, my skin was clear, my face wasn't plain anymore, and my figure started to come back. The "beer" belly was going away too! This lasted about 4 months.
Then in Sept. 2002, things changed. I started to gain weight again and just thought I wasn't being disciplined enough on the diet, I tried harder (by the way, the weight came off without exercise too). Nothing worked. I was tired. Very tired. I went to see my GP and he told me I was fine. Just stress. The next year I was sick as a dog. From being very weak to being very nauseous, I knew something else was wrong with me. There were some days when my spirit would want to go home to be with Jesus. I was in pain, more weight came back on (the current endocrinologist didn't help issues either), lethargic, cold and hot, angry, crying, euphoric, hair loss, skin changes, the hump, clavicular filling, facial plethora, plain features, hirsutism, you name it.
I went to see Dr. Friedman in Oct. of 2003 after my endo couldn't find out what was wrong with me but insisted that I didn't have Cushing's. I found out about Cushing's through a low carb board and someone had mentioned it after I talked about the problems I had with the diet (it wasn't the diet's fault at all!). I looked it up on the internet and there it was. I checked out a few boards before deciding to stay with this one which has been a life-saver to me.
Dr. Friedman had diagnosed me and a dynamic MRI had confirmed that I did indeed have a tumor on my pituitary. I also had Growth Hormone Deficiency along with hypothyroidism classifying me as hypopituitary. The surgery took place in December of 2003. He removed 2 tumors. After surgery though I looked worse than before. My cortisol levels skyrocketed. I weaned off Cortef 2 months post surgery.
I do not believe I'm cured and according to some post surgery tests I'm inclined to go with my feelings on this. Even Dr. Friedman had said that he's not convinced that I'm cured. So, the search is on to find out what else is causing the Cushing's or if it's still in the pituitary. The path report did say "hyperplasia". It's been 6 months post op and I still look and feel the same, only I'm hot all the time now.
Here's an update. It's confirmed one year later after surgery that I'm not cured of Cushing's. That's something I already knew considering my cortisol levels were in the 40's post surgery. Dr. Friedman and I are now working on a new plan to see where to go from here. If we are considering another pituitary surgery with a different surgeon. I have had high UFC's and serum cortisols. Nothing has changed on me. No weight has come off except for one slight adrenal crisis where I lost 20lbs. but 10 of those lbs. came back. The other 10 want to do the same but I'm fighting them as much as possible. I hope that I can have surgery, whether it's pit or adrenal, this June, 2005.
