And It's About Time There Was Some Support For Cushing's!
I am 35 and when I was 20 I was diagnosed with Graves disease & a thyroid storm after a year of being told I was nuts. They did not us the radio active iodine, they did surgery. They were only able to remove 90%. I have been habitually sick ever since. My thyroid levels bounce all over between sky high to can't move and a year ago I was told that it is growing back, my Graves antibodies are back & I have a strange growth on the gland. No one has ever done anything about it!
In the past three years I have been sicker than ever & also very depressed of & on with major bouts of panic/anxiety attacks. I also have blackouts & was diagnosed with psuedo seizures, which only makes it that much harder to be taken seriously in the medical community.
Needless to say I have been treated as only a psych case even though I have been experiencing all kinds of body health issues.
Finally in July '05 I was diagnosed as having 2-3 3-4 mm pituitary adnomyomas. All of my Dr.s just dismissed that info & told me that all of my symptoms were "psychsymatic" and told me to see a psychiatrist (again) and take my meds.
I was finally told about Dr. Ludlum at OHSU. I called & spoke with him this week & he listented to all of my woes & advised me that he thinks I may have cushings & wants me to come up for a five day workup.
None of my Dr.s have done any testing on anything to get a better perspective of what these tumors are doing to my body. All I know is that I am very sick & at the end of my rope. I have been everywhere, including Stanford & all the Dr.s let me down. I hope & pray I will get real help.
I am here to connect with others going through similiar situations & to get as much advice & information as I can.
I am scared & don't know what to do anymore.
Update Novemember 2, 2007
1983 1st ovarian cyst found, I was 13. Ongoing rupturing cysts to this day, Diagnosed with PCOS and put on Birth Control for cyst management.
1985 Diagnosed with endometriosis, had years of pain & cysts & laporoscopies.
1991 Diagnosed with IC, chronic bladder & kidney infections begin. Still a major problem.
1991 1st kidney stone, OUCH! To date 9 total.
1991 Miscarriage, diagnosed with adenomyosis
1993 Andrew Born
From 1994-2001 My health was the best it had been.
2000 I got pregnant and from the start it was a rough pregnancy. My thyroid went out of whack and wild fluctuations in my TSH are showing up for the first time. My highest TSH to date is 146.
July 2001 Victor born and my health spirals. Weight goes up after birth that gives me a total weight gain of 75 pounds from pre-pregnancy to after.
I was Puffy for months & months and had problems with edema. My Moods began swinging wildly, I had chronic headaches and depression sets in I begin having Anxiety/Panic attacks.
2003 1st Pituitary Microadenoma found, told it was nothing. "Seizures" begin. Diagnosed as Non Epileptic Pseudo Seizures. They stopped as abruptly as they slammed into my life.
From this point I get sicker and sicker. I go to over 30 Dr.s, many of them specialists that I traveled to. Every Single Dr. told me it was all mental illness. Was diagnosed with PTSD from a difficult childhood situation. I was placed in mental wards 9 times and put on over 25 medications, all for psychiatric help. I also had a hysterectomy leaving one ovary and had my appendix removed.
2004 Begin Bio Feed back, Hypnotherapy and try every self help book I can find.
12/2005 Found this amazing site and began demanding more tests and educating myself.
6/2005 A new scan of my pituitary shows The pituitary gland is not enlarged. However, There are 2 hypo-enhancing foci within the pituitary gland. There is a hypoechoic lesion within the superior right side of the gland & also within the inferior central aspect of the pituitary gland. These measure approximately 2-3 mm in dimension. The floor of the turcica in tact. Pituitary Stalk deviates to the left. Mucosal thickening and fluid within the right maxillary sinus. There is deviation of the nasal septum to the right.
Also found that day was mild bio frontal cerebral atrophy of the brain.
AGAIN told this could cause none of my symptoms and told to stop being obsessive. I was diagnosed with IBIS, I had candida in my intestinal tract, and a small bowel obstruction. I was sleeping constantly and more depressed and anxiety ridden than I had ever been.
1-2006 Go to see Dr. Ludlam for a week of testing at OHSU advised that I appear to be a cyclical patient and I had "diagnostic highs" in my midnight blood draws and almost no detectable cortisol in the AM draws. All Urines come back normal to high normal, But my Salivaries were high normal or diagnostically high I did not suppress on the dex. test. Low Growth hormone is found.
I do 2 rounds of home testing that all looks just like it did in Portland.
4/2006I Make The Biggest Mistake Of My Life I go into denial, throw out all testing supplies, quit the boards and find a sweet but 80 year old PCP who had no idea what was wrong. I begin rapidly loosing weight, I suddenly go from never sleeping to total insomnia, My pain goes into overdrive, nausea set's in every morning at 2 am on the dot which is still happening. When this nausea started I was 160, at my lowest in the summer of 2007 I got down to 118. I was finally sick enough to leave denial island and came back to the boards in the fall of 2006.
With his help I titrated off of all of the Psych drugs, and that was a Big help, But he also prescribed 30 mg of prednisone per day to help with a "sudden breathing problem".
2/2007 I locate Dr. Eddy and begin the process of untangling my long history of medical mystery.
5/2007 See Dr. Ludlam and he advises me that I can't test on steroids and explains that my pituitary adrenal axis is shut down. He notes significant change in my adrenal glands BEFORE steroids and tells me I must get into a new medical community immediately and a steroid wean started.
5/2007 I relocate from Northern California to Medford Oregon where Dr. Eddy practices.
Since the relocation I have:
Found out that my body can't metabolize T4, switched to cytomel. My TSH is holding steady now.
Found out I have a hernia from a year of vomiting daily.
Diagnosed with Fibromyalgia.
Diagnosed with Developmental Dysplasia of Both Hips.
Found out I have a Fracture in my spine & 2 extra floating ribs on either side, all either fractured or torn from the cartilage.
Diagnosed with "possible Lupus" that is still pending.
Had A Sleep Study, still awaiting results.
I am currently with a good team of Dr.s who are testing me for all sorts of auto immunities and trying to make sense of 17 years of Mis-diagnosis and Judgment.
I have weaned Successfully to 4 mg of prednisone, and currently fighting like hell to get of totally off so I can start the testing process all over again.