I seen my endocrinologist this week and several other doctors as well, including a neurologist and sleep specialist for my youngest daughter (hit by a car.) My oldest daughter has been ferrying us around to our various appointments. Kids come in handy sometimes. 🙂
I have been taking Vitamin D 50000 for three weeks ( 3 days in a row) and I started hydrocortisone 40mg and 20mg for my adrenal glands. Overall, I lost about 25 pounds but I have also regained some appetite.
For three days in a row I have been out of bed and walking throughout the house, without feeling breathless! Then I had a setback and crashed again. I woke at 5am feeling incredibly ill so the hydrocortisone dosage was cut in half to 20mg in the morning and 10mg in the evening.
I was afraid to hope for more since being so ill. This doctor has been so supportive and willing to look farther into my health problems. At the appointment we made another adjustment down to hydrocortisone 10mg once a day in the morning only to combat insomnia.
I did not sleep well the night before my appointment and I had to drag my unshowered exhausted and disheveled butt to the doctor’s office. He was pleased just to see me sitting up and talking! Even though I looked like a turd he said, I am clearly going in the right direction. My daughter confirmed that was I in a rough state several weeks ago; they both seemed pleased with my progress. I am not cured and I am still tired, but I am eating and talking, and even walking around again.
For those not following this blog, I had previously been dismissed by several doctors as needing psychological help (I did need it because of my underlying illness’ effects) and tossed an antidepressant and/or anti-anxiety drugs then sent on my way.
Many people do not even know they have an endocrine system!
For many months I could feel something catastrophic happening in my brain and body and did not know where to turn. Many days I could not get out bed from exhaustion, although the depression and anxiety seems to have eased. I researched other possible causes of my symptoms and thought surely it must be the autoimmunity acting up and f*cking with my thyroid?
We are going to systematically check each part of my endocrine system until we find the diagnosis. The doctor assured me he would try whatever it takes to get me back to my old self (note he did not say, “good as new,” as that would be beyond his powers.) It is the fact that he takes those few moments to reassure me, that help me the most. He saved my life.
My body’s hormone superhighway had insidiously and violently crashed.
I keep a simple daily log of my symptoms, a list of every medication (and dose) I took or started or stopped, and what I ate each day. In this way the doctor could see a pattern as my symptoms grew worse.
This is a real sample of my daily log:
12/18 extreme anxiety with OCD-like symptoms, thinking distorted, images and words repeated. in bed. exhausted. no appetite .
12/23 Dr. A SCARED! thinking distorted, images and words repeated. exhausted.
12/25 hot flashes extreme anxiety with OCD-like symptoms, SCARED! thinking distorted, images and words repeated. in bed. exhausted. no appetite .
12/26 HOT FLASHES, ANXIETY, MIGRAINE SCARED! thinking distorted, images and words repeated. in bed. exhausted. no appetite . gagging/vomiting daily.
12/30 no menses anxiety with OCD-like symptoms SCARED! thinking distorted, images and words repeated. in bed. exhausted.ate sm burger
01/02 woke up 4-5am anxious again, gagging vomiting no appetite anxiety with OCD-like symptoms SCARED! thinking distorted, images and words repeated. Dr. B (OBGYN) prescribed estradiol patch. in bed. exhausted. no appetite .
01/03 woke up 4-5am anxious again, gagging vomiting no appetite anxiety with OCD-like symptoms SCARED! thinking distorted, images and words repeated. Dr. C (Psych) changed Pristiq 50mg to prozac . 10mg, clonazepam. started estradiol patch. in bed. no appetite .gagging/vomiting. exhausted.
01/04 woke up 4-5am anxious again, clonazapam,, gagging vomiting no appetite . stopped Pristiq. in bed. itching all over. weight loss. gagging/vomiting. exhausted.
If you have a chronic illness (40% of Americans do!) and you think keeping a daily log of your health, moods, eating habits is too time consuming, or too anal-retentive, then you are probably unknowingly sharing only part of your health story and perhaps feeling unheard; in this way you are not seeing the forest for the trees!
I keep a daily log and my doctors are still struggling for a diagnosis! So be proactive! So far I have been able to avoid prolonged hospitalization, the psyche ward!, unnecessary testing, and money.
No one expects you to become an expert or know all the technical terms, just have a general knowledge of your symptoms and write it down! Webmd.com, My.ClevelandClinic.org, Mayoclinic.org and others, can provide basic insight and have easy to read websites; some even have pictures!
By being proactive with your healthcare you will be able to work in partnership with your doctors. It is in this way you will know for sure whether or not you are being blown off, or need to search for another doctor. I am not advocating that anyone take an argumentative stance and insist on unnecessary tests. I advocate researching and having a comprehensive dialogue with your doctors. If you feel unheard, move on! In this way, you help them, help you.