In her bio Ferol writes:
I started noticing irregular symptoms in my late 20's, but more developed since 2001, and rapidly more chronic as time went by.
Finally at my March 2005 physical, I had enough symptoms listed for my GP to start getting the connection to Cushings. I was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnoses. MRI confirmed the tumor involvement and surgery was performed 09-30-05.
I have lost 30+ pounds after reaching a high of 190 prior to surgery (lifetime avg was 135-140). I still have a diabetic condition and BP being regulated by meds.
I saw the special on DISCOVERY Health, and do sincerely appreciate the exposure.
Update February 3, 2007
I am now about 1 1/2 years post-surgery and have stabilized at 40 pounds lost. I really would like to loose another 10-15 punds, but I am NOT going to get worried over it. I look and feel so much better than I did pre-surgery. I am now facing the regular aging issues, i.e. skeletal soft tissue degeneration, not knowing how much, if any, these conditions may have been exaggerated by the Cushings in the 15 or so years before.
My menstrual is regular since surgery at a 3.5 week interval, rather than the usual 4 week interval I had pre-symptom. I am considering talking to my docs about some kind of regulation aid (the pill), or removal. Frequently the period gets a little severe for a couple of days. I have to carry several spares with me.
Pre-surgery I had to get a special pair of shoes, triple wide. With the weight gain, I was cramping my feet into regular shoes and pinched the central nerve in both feet. I got a new pair a couple of weeks ago, just a regular wide, which is usual for me. I still have that scar tissue around the pinched nerve, but I can live with that.
I would love to support anyone else in the Charlotte NC area. E-mail pal or whatever...
Update January 30, 2008
2+ years post surgery, I am holding at the same weight as prior entry, but the water weight has all dropped off. My face and extremities are so much more comfortable.
I went to see an OB-GYN to get the female troubles under control, and since last April (Easter week 2007) I have been on Loestrin24. This has been a BLESSING! I will soon stop taking the pill for a 2 month interval, prior to my next appointment with the OB-GYN, to see how my system will self-regulate. My GP and Endo weren't too keen on the idea, but THEY didn't have to DEAL with it. I went in to the GYN with the idea of having my uterus removed, but the alternative has been much improved.
Just listened to the 1st broadcast. I'll certainly tune in again in the future!
Update September 14, 2008
I have received copies of my latest lab results, and in my unexpert opinion, they look pretty good. The blood and urine samples were collected about 0830am - 0900am. My endocrinologist seemed to be satisfied with the findings as well.
Vitamin D 25-OH Total 61 ng/mL (20-100 ref range)
I have been taking 50K unit supplements weekly since last April. My February reading was < 7.
Glucose 100 fasting (70-99 ref range)
Hgb A1c 5.9 (4.4-6.4)
Urine creatinine 141
Urine Microalb <3.0 (0.0-23.0)
Urine Cortisol 16.6 (4.0-50.0)
The one thing I have noticed for many on the boards, is that they seem to have trouble with the Vit D (ergocalciferol) intake. I hesitated filling the prescription for a couple of months, until I saw that many here were also given the same prescription. This is my first test for it since then. It seems that my overall level has improved significantly in the four months.
I can honestly state that I do not recall having any ill side affects from this prescrption, but then I didn't have any trouble with the METFORMIN. I rather missed having MET as a supplement, because of the positive weight loss affect I was experiencing even at 250 units a day (1/2 tablet). As long as I was walking the dog 2 -3 times a day, I was maintaining post surgical low weight of around 152. Since I have been giving in to my bad back and just doing what is required for home and work, I have gained 10 pounds since last January.
I continue to sporadically monitor my blood sugar, especially if I wake up feeling a "little off". My blood sugar first AM is averaging 117 - 123.
I do have a full time desk job, working for a LARGE public utility, testing special business telephone circuits during the installation process. I have been employed in this mode since late 2000. I am "confined" to a 6'x6' cubicle for the majority of the day. Back in the day, I was a full fledged electronic technician, repairing everything from radio pagers to transmitter systems, and the connecting network systems. This kept me physically busy, also helping to maintain my pre-Cushings average of 140 pounds. Granted I now know I was actually Cushie during my time as a radio tech, but the symptoms then were not apparent to anyone but me.
The one thing that I have noted since starting the Vit D, is that my finger nails are now stronger. They were always thin, cracking and breaking. While I was on MET, they improved for that duration, which I did take note of, presumably because my blood sugar was being controlled then and my metabolism was in an enhanced state. I realized recently, that I actually have to trim and file my nails to keep their length maintained, quite unusual for me. My bone density scan about 2 years ago was good, so now my bones are better?
With so many under recovery from summer surgeries, and some facing recurrence testing & diagnosis, I thought another "success story" might be helpful to those trying to get treatment, and those in initial recovery.
My full story (in reverse order) can be found here:
FerolV was the subject of a Live Interview in the Cushing's Help Voice Chat / Podcast series on May 8, 7:30PM. Archives are available.