And It's About Time There Was Some Support For Cushing's!
In January, 2001, I had began to notice changes in my slender body that I didn't like. It seemed that my clothes no longer fit in the waist and then shortly thereafter, I awoke from sleep one morning and looked as though I was seven months pregnant. My sisters and I chalked it up as "middle-aged spread" and they relished in the thought that I, "Little Skinny Diane" was now going to join them in the frustrations of coping with obesity.
I had surgery in February '01 for bladder incontinence and in March '01, I had sinus surgery as a last resort for the terrible cough I had, for which there seemed to be no reason for. The sinus surgery didn't help my cough so I continued to be persistent with my Doctor to find a cause. Following tests, I was diagnosed with gastric reflux and told my esophagus had narrowed and I would have to periodically undergo dilatation of the esophagus to relieve the feeling of my having something caught in my throat and to reduce the coughing spasms as they were caused by the reflux. Needless to say, following the esophageal dilatation I still continued to cough, sometimes violently.
Please keep in mind, each thing wrong with me was like a puzzle piece that my doctor just hadn't connected with all the other pieces yet. I complained about the weight gain - he said, diet and exercise. I complained about intolerance to heat and my head sweating until it's dripping - he said, menopause. I complained about my neck appearing larger to the point it actually appeared to sag over my clavicle bone at times - he said, I can't feel anything there. I complained about coughing again and again and again with the feeling that something was caught in my throat - he said, reflux, reflux reflux.
Finally, I convinced him that as a smoker, I needed a chest CT scan to convince me that I wasn't dying of lung cancer, despite the normal chest x-rays. Thank God, the lung CT was normal, however, an abnormality was noted with my left adrenal gland. The doctor's recommendation was to have a CT scan of the adrenals in six months to see if the abnormality grows and if so, we'd worry about "why", then!
That didn't set well with me but he was the expert so I reacted with passivity. During that visit, my blood pressure was 198/114. They repeated it 4-5 times and it was accurate. The Doctor said, it's probably nothing but a fluke since your BP has always been consistent at 118/70 but to be on the safe side, I want you to get a BP cuff from Walgreens and track your BP several times a day and I will see you back in a month. He failed to mention what I was suppose to do with the readings, if high, but I did as instructed and the BP readings ranged from very high to low and everywhere in-between. As the days followed, I thought more and more about it and my BP fluctuations were crazy.
So having some medical knowledge, I had put all the pieces out there for a consideration value and once I had connected all the credible ones, I arrived at a preliminary self-diagnosis of "Cushing's Syndrome", etiology unknown, probably related to adrenal abnormality, further testing necessary.
During this waiting month until my next appointment I realized that, while I was under more stress than usual, my mood swings were horrible. I was upset with the world. I hated to look at myself in the mirror. I didn't want to get dressed and go anywhere since nothing fit. It did not help me any when, at my daughter's wedding, a friend which I hadn't seen in a couple of years, asked me, why I let myself go, referring to the weight gain. I was always a junior size 5. Now she's looking at a rounded torsal woman in a snug misses size 12 with a round face, fat neck and saggy ripples in the skin above the knee caps. My reply, "I guess I'm getting old and catching up with the rest of you girls."
I suffered with severe depression and still do, wanted to die and mistakenly attempted to overdose on antidepressants so now family and friends think I am crazy. And perhaps, I am! I do want to control my emotions, I tell myself I must control my emotions but then, I don't because I can't seem to get a hold on myself. However, my emotions have certainly been provoked a couple of times so I don't feel 100% out of control. Just 98-99 I do hate this feeling of despair.
This is where I am torn between "Do I want the tests results to confirm a diagnosis so I can gain back my mental stability status with friends and family or Do I want a "confirmed" clean bill of physical health and acknowledge to the rest of the world that I am crazy, I am getting old, I can't stay focused, I can't remember things, my bones hurt, I accept all the scars on my body from the itchy red bumps that I scratch until they bleed? I accept complete surrendering of my mental faculties and I will go quietly to the Nursing Home when you all decide the time is here. From some of what I read in the group bio's, an insanity or senility diagnosis would be the easiest way to go.
So now that I vented and strayed off course....let me take you back to my follow up doctor's appointment.
I went in there, listened to what he had to say. Basically, BP was normal during the visit so it must have been a fluke, (he didn't ask about my BP throughout the prior month), my cough was still due to my reflux and I needed to make an appointment to get my esophagus dilated again and we'll repeat the CT scan in 4-5 months.
Now I switched from being passive to aggressive. (See, that right there is a mental disorder.) lol Actually, I just felt the need to take control of my condition, whatever it was and I could not blame the doctor for missing anything, if I failed to speak up. After all, I am living with it 24/7. He is only hearing about it for 5-10 minutes every couple of months or so, together with hundreds of other peoples complaints and symptoms.
I told him that I was concerned that I had Cushing's syndrome and that I felt that blood and urine tests would be valuable for early detection, if my suspicions were correct. He then referred me to a Endocrinologist only because he treats my youngest daughter and both of my sisters for hypothyroidism, he was aware my brother has a rare carcinoid tumor of the small bowel which has metastasized to his liver and has hypothyroidism, and he was aware that, I had diagnosed my Mother's hypothyroidism despite her failed efforts to get the doctor to listen to her symptoms and she subsequently died due to the affects chemotherapy had on her organs following a thyroidectomy for Medullary Carcinoma of the Thyroid and Non-Hodgkin's Lymphoma which had gone undetected until she could no longer breathe due to the tight constriction the symmetrical tumor was causing on her esophagus. (Back then, I even thought she might have Cushing's but failed to pursue it because the doctors were giving her synthyroid and I lacked the knowledge to realize that she could have had more going on then just the hypothyroidism.)
And lastly but not least, I have a niece and a nephew, (one from each sister) that has been diagnosed with hypothyroidism as well.
I am most definitely convinced, there is a genetic predisposition to thyroidism and I am now concerned as to what genetic abnormities may lie beyond for many in my family, if or when, the gene's identity is unmasked as something much more complicated, much more serious and much more debilitating then a rather common condition, easily treatable, called hypothyroidism.
I saw the Endocrinologist 3 months later, (he must be good to be solidly booked) and immediately diagnosed me as having a thyroid goiter. He ordered many blood and 24 hour urine tests and the tests indicated that my body is producing to much Cortisol which puts some sense to my suspecting Cushing's Syndrome. And while enlarged, the lab tests indicated that my thyroid is functioning properly so tomorrow I am having a thyroid ultrasound to identify, if more than one nodule is present and if so, how many? location? type?
I am scheduled for the Adrenal CT scan on March 11th so I will know if any growth or changes have occurred to the abnormality on my left adrenal gland since 4-5 months ago and I will be having the quick DEX test later this week so that is probably the most important test for me since that will be the result that will "Title" this book I just wrote for all of you to read. The Endo doctor said that once all of the tests results are in he will call me and depending on the results, we'll put together a "Plan of Action." I took that as his way of warding off questions at this time. Perhaps some of you more experienced with my symptoms may know what Action Plans I might expect. If so, I'd appreciate hearing from you. Thanks for taking the time to hear my story. I think it was good for me to write this. I know my audience understands and are interested in what I may need to share at this stage of the process. I will keep you posted.
A lot of new developments have occurred since I last posted. Never have gotten the DEX test. I am scheduled to do it this Monday and Tuesday. All during 2002, I had consistently ran a high Calcintonin level in my urine. This lab result indicated that my thyroid tumor was most probably malignant and I had to have a thyroidectomy in August, 2002. (For those of you who may have to have this surgery, I felt it was easy and little pain afterwards. The only problem I encountered was very low calcium levels until the parathyroids began functioning again. This took about 7-10 days which I had to have IV's and stay in the hospital longer than expected.)
The biopsy showed that the tumor was that of Medullary Carcinoma but was small and confined with no lymph nodes involved so I was very very lucky. The Endo informed me that this type of Thyroid tumor is usually inherited and that now a DNA test was available to see if I had the GENE that would have passed this on to my children. The DNA results proved that I did have the GENE and would have received it from my mother who in 1989 died following Chemo for this type of thyroid cancer. They didn't know as much back then as medicine does now.
We are much more fortunate than our parents were. Anyway, for me, the DNA testing answers the why's that are so often asked when someone gets sick. I now know for sure "WHY" . Anyway, I had hope that the major problem was over but how wrong I was. My weight gain has increased, all the other symptoms have continued to get worse and my blood pressure in always high. I went to the Doctor again last week out of desperation that he needed to do something to help me. He ran blood work and my serum cortisol levels were 32. (Normal is <23) He repeated the test and again it was 32 so now he wants me to take the (quick) DEX test. I am sure that it is from the growths on my adrenals but I know he must rule out other possibilities. So this is the latest on my saga. It's nice to know that you all are here for support. Please feel free to if you want to chat.
