And It's About Time There Was Some Support For Cushing's!
My name is Angela and I am 27 years old. I am in desperate need of medical advise. I have been to several GYNs and Endocrinologist over the past 12 years and with every visit I am left with more questions than answers. Just recently I found a specialist, Dr. Ludlam, who I have found to be one of the few doctors in Washington who has worked with Cushing's patients and understands the necessary actions needed to make a determining diagnosis. I recently sent him an email with my symptoms and medical history and was shocked that he actually responded with a phone call the very same day. I have an appointment scheduled for July, 2007.
I did not know anything about Cushing's till this past year. I was originally diagnosed with PCOS when I was 15 and since then, it has been an up hill battle to cope with the many symptoms I face on a day to day basis. But when I found out about Cushing’s and the many similarities to PCOS I decided to investigate it further. None of my recent doctors have even considered Cushing's and some had even questioned my original diagnosis of PCOS, but here are my symptoms below.
SYMPTOMS:
MEDICATIONS:
SURGERIES:
In 93 I had started getting severely sharp pains once a year with a very irregular period. Basically I had a period once every three to six months. I was a normal weight only 115 lbs and had some acne. By 95 I was diagnosed with PCOS but had also formed dermoids. They put me on birth control pills to regulate my period and prevent cysts and did surgery to remove the dermoids. I gained weight quickly after this surgery and began to feel fatigue on a regular basis, but otherwise I was normal.
About 2000, I had decided not to take any medications for a couple of years because I was tired of the weight gain and the lack of help. I investigated herbal healing and thought it had helped, I had lost a lot of weight and was feeling great for a while, but the sharp pains came back every three months and in 2003 they found 10 dermoids on my ovaries. They could not explain the recurrence and this is also why they thought I did not have PCOS since the dermoids are not related to PCOS. A few months before this surgery I had been having bouts of sinus and lung infections sometimes lasting months at a time.
Within the past few years I have been tested for a number of things. I was positive on an ANA test in 2005 so they tested me for auto immune diseases, still Cushing’s and PCOS never came up in conversation and when all was said and done they said I had no auto immune diseases and that it was probably a false positive. For a few months I also had problems swallowing, it felt as if I ALWAYS had something stuck in my throat, and again the tests came back normal. Then I started to have problems with my hands and feet, soreness and finding it hard to open bottles without cramping or having trouble walking in the morning, all my tests still came back normal.
So now my feet hurt every day, I'm gaining weight, I have now lost my libido completely, depression kicks in worse than ever and according to the docs I am normal, so I think it must be mental problems and stress and do not press it further. I even went to a therapist because I got pushed to the point of feeling like this was all caused by depression. It did not work either.
After years of ignoring the problems once again, in 2006 I decided to go back to an Endocrinologist to get my problems situated. Things had gotten worse for me, weight and depression as well as a lack of libido had almost ruined my long term relationship with my boyfriend. I went from a size 12 to a size 16 in six months, now weighing 198 lbs. But the doctor did not find any abnormal hormones, DHEA-S, fasting blood sugar, etc, were also normal, and he did not test for Cushing’s. He even told me that there was no need to be on birth control because by this time my periods were normal monthly cycles besides the fact that every few months they were extremely painful periods. He brushed off the unusual facial hair (thick dark hairs mostly on my chin and in a large amount) to be caused by my genes, which no other female in my family has ever had facial hair before.
Two months after meeting with the above Endocrinologist, I ended up in the emergency room from severe pain caused by a burst cyst. This is not the first time I had experienced this kind of pain, since I was 13 I usually would get a bursting pain like this every three to six months which I told my doctors about for years, but did nothing to fix the problem because I felt there was nothing to do and that it was not serious. I did not know the extreme pain I had felt all these years could have been from a twisted ovary and was as serious as it was.
My new GYN determined I did have PCOS but also dermoids that mysteriously reoccur for no reason. She put me back on birth control and since then I have had no sharp bursting pains. Solves the cysts but does not solve the dermoids. My current GYN is monitoring the dermoids I have and has not opted for surgery yet because they are not doing any harm. She also put me on spyronolactone because of the facial and body hair (per my request) and suggested I see another endocrinologist to monitor my PCOS symptoms.
A month after taking the new drugs I got another sinus infection which seemed to come up every couple of weeks. I also had a strange rash (tiny white/red bumps) slightly itchy on my back, shoulders, neck, and chest that went away after about 2 weeks. I've never had a rash before or since and none of my doctors felt it was drug related.
I've gained over 40lbs in the last year and it continues to pile on, despite my overall good diet habits and my recent exercise plan. I am now 215 pounds and rising. I rarely go over 2000 calories a day and still I have not been able to lose any weight. Within the last three months the stretch marks have begun to form mostly on my inner thighs, a few on my belly and arms, and a few on my breasts.
It was only this year that they discovered I was Insulin Resistant after I approached my GYN about Insulin Resistance and Insulin sensitizers and requested to be tested. Before that, doctors had checked my blood for diabetes and hormonal changes and the results were always normal. This Insulin test was the first time they ever tested me before a meal and after a meal to see the difference and it amazes me still that they did not do these tests before or catch this sooner. This also makes me wonder if there are other things they are missing.
Although I feel the Metformin is working a bit to help with the insulin problem, I also feel there is more going on than my doctors care to explore. Just recently I've noticed that my left eye is starting to get blurry and there is a light pressure to it. I have never had problems with my vision before.
SO this is it. I don't know what else to do and I just want to feel and look normal again. All my life I was never considered a fat girl till the past 3 years. I don't want to gain another 100 lbs before the doctor's see me as a significant case, the little bit of weight I have already gained has caused more problems than I can keep up with. I am only 5'4 and this weight kills me. I have to shave my facial hair everyday and apply lots of make-up just to feel more comfortable going out and I don't go out much these days either, my anxiety attacks make it hard for me to even go to the grocery store and it is even harder to do basic tasks when I am alone.
I am not a hypochondriac, I eat right, I exercise, I do not smoke, do not drink, and I do not use any illegal drugs. I even fight my cravings for carbs and sugar on a daily basis. I certainly do not want to be diagnosed with Cushing's or any other disease for that matter, but I do want someone to tell me what IS wrong so I can focus on fixing it and getting my life back.
If everything is so normal like all my doctors have said in the past, why do I keep gaining weight? Why do I have facial hair if my hormones are normal? And why do I keep getting dermoid cysts when there should be no recurrence?
I need a doctor who knows the answers to these questions and I hope Dr. Ludlam is that doctor. I just need to know if I am going in the wrong direction here, or if I should be tested for Cushing's. The sites I have visited suggested I show my doctors’ pictures and I have not done this with other doctors but did send Dr. Ludlam some pictures and it was hard for me to see the drastic changes. I have gotten so good at avoiding the camera I didn't realize things had gotten as bad as they have. They also suggested that if I have been diagnosed with PCOS that it is a good idea to test for Cushing’s as well since they are so similar.
Looking forward to any feedback or any alternatives other than Cushing's and PCOS that could cause all these problems. Thanks for taking the time to read this post, hopefully I will come back with a diagnosis and the answers on how to fix the problems.
I finally went in for a week long Cushing's test and the findings were interesting.
My Late-Night Salivary Cortisols both came back normal. results were 0.9 and 2.1 anything above 5.0 is considered high, but having anything over 0 is still considered unusual.
One Urine Free Cortisol came back high for cortisol levels at 59 the other came back normal at 34, anything over 50 is high.
My Dexamethasone CRH Test was negative
My random ACTH levels were normal which could still be a positive for a pituitary tumor. Results were 27 and 48 is high.
My random Cortisol test came back slightly high normal results were 25.2 and over 28 is high
My midnight serum cortisol came back high normal at 5 and high normal again at 4.7 anything 5 and up is considered high.
My MRI of the pituitary showed a 4x4 poorly defined microadenoma towards the front of the pituitary and another 2x3x5 microadenoma at the back of the pituitary.
My CT scan of the adrenals showed a thickening and enlarging of the Adrenal gland which my doctor says is a sign of too much cortisol secretion.
Of course I still have to do more testing since all these tests were only slightly high or slightly low.....they cannot diagnose me but feel I am on the right track. I now have to keep a journal of my symptoms and when I feel I am going through a cycle I have to test myself. Anybody know what's best to look for when monitoring symptoms?
