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AllisonChained (AllisonChained), Undiagnosed Bio

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undiagnosed2

I’m becoming increasingly concerned I may have Cushings and I dont know where to start.

In 2006 my health suddenly took a dive. It started with my mental health. I had severe anxiety and depression and panic symptoms. I am currently disabled due to agoraphobia. My fight or flight response was on a hair trigger. My brain would give me sudden urgent DO THIS RIGHT NOW MESSAGES, as though if I didn’t I would be in danger. But the things it was telling me to do was things like jump out of the moving car, put my hand on the stove. I was hospitalized eight times in impatient mental health. I feel like I’m on high alert all the time.

In 2007 I developed insomnia and it’s been very severe ever since. I sleep on average three to five hours a night no more than five nights a week. This past October I didn’t sleep for 9 straight days aside from two one hour naps. I have circadian rhythm disorder and when I do sleep, it’s usually between 8-11am. I also have diagnosed sleep apnea. I take Trazodone, it doesn’t help enough.

I’ve been being treated for the past four years for Fibromyalgia. I was seeing a PT for massage therapy twice a week for two years because I am in serious pain all the time. Every day I have sinus headaches and headaches behind my eyes. I have pain in my lower back/hip/IT band and then in my neck, shoulders and arms. My shoulder joints are so painful I wake up with my arms dead more often than not and I just feel incredibly weak during the day. I take 2700 mg of Gabapentin/day. I am 60.5 inches in height and weigh 297lbs but I have never had high blood pressure. I have a pendulous abdomen and keep getting yeast infections under it. I have tons of stretch marks, adult onset acne cysts/boils and mosquito bites that just wont go away. In the past year I’ve been losing my hair by the handful.

For a while I thought I might have a sex addiction because my hormones were just out of control but then my sex drive abruptly disappeared. My menstrual cycles disappeared as well. I’ve had three in the past five years. And I don’t know if it’s sleep deprivation or what but my vision has gotten so bad lately. I had mild double vision so they put prisms or something in my glasses to raise the vision in one eye slightly and lower it in the other. I used to be able to get by without them but now I feel like I cant see hardly at all without my glasses and I have trouble tolerating light.

I have an appointment with my primary on Tuesday but I frankly do not trust him and I dont know how to bring this up and request to be screened.

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Mary (Mary), Pituitary Bio

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golden-oldie

 

I am 38 and had three transphenoidal surgeries for Cushing’s.

I had a CSF leak with the 2nd and when they went in to repair it and look for more tumor my remaining pituitary gland was necrotic and I lost the whole gland.

That did not cure my Cushing’s so I went on to have a laproscopic adrenalectomy followed quickly by galbladder problems and appendicitis. Dr. Ludlan, Deleshaw and Sheppard at OHSU worked with me. I had my pituitary surgeries in 03 and my adrenals and other 2 surgeries in 04.

I have not been able to return to work as a nurse and feel thie surgeries have greatly reduced my quality of life. I would love tro talk with other people.

I have two adopted kids from China as a single mom who are 12 and 13.

I know have problems with fibromyalgia and arthritis.

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Helena (hummerbird), Steroid-Induced Bio

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Hi! My name is Helena (hummerbird). I am going to be 60 next week, Nov 16. I have come full circle with this.

I knew I had adrenal problems 12 years ago when I got stuck in the ‘fight or flight reflex’. I paid to have saliva tests done and it showed that I was dumping cortisol into my system early evening with my lowest point being 6am in the morning. I showed my allopathic doctors the tests but none would put any stock into saliva testing and just blew me off (this was 2002).

Some of my first signs were extreme insomnia yet when I did sleep I would still feel extremely fatigued, flushing of the face, neck, chest, and back, weekly migraines and daily headaches which started after I was 45, unexplained weight gain, crazy buzzy internal tremor adrenaline smacking (I could actually taste it!) jitters that would not go away, hypersensory (especially to light and sounds), feeling painfully sunburned even though I had not been out in the sun, pain in my legs going way beyond restless leg syndrome, totally fearful of everything, developing a hump between my shoulders and a host of other symptoms.

I was first diagnosed with fibromyalgia 03, then SLE Lupus 09 (positive ANA but no markers).

We moved to Colorado in 2012 and then back to Oregon 2014 and when I saw my rheumatologist again after 2 1/2 years (Oct 2014), he said it looks like you have Cushings? So at the moment I am suspected to have Cushings. I have been reading up on it and I am totally textbook (including the fact that I could literally step into the profile of the picture of the woman with Cushings).

Not sure if this is drug induced or if the prednisone finally brought out the demon that’s been tormenting me. My rheumie wants me to slowly wean off the prednisone. My dosage was 5mgs per day unless I was flaring (dealing with horrible muscular pain and internal tremors) then I was to do a step down starting at 30mgs back to 5mgs. I probably do a step down every other month.

My internist in Colorado wanted me to get off my Percocet 10/325mgs 4 times a day and try to deal with the pain. For the first time in my life I used MJ edibles to get off the Percocet with only a week of hard withdrawals. I was on the MJ edibles for 3 weeks until I realized I was allergic to it! I now take 2 Tramadol 50mgs 3 times a day to control pain. On the negative side this is not working because I have too much breakthrough pain but on the positive side I have a clearer head (I’m able to focus and read again!).

Over the years my days have gone from one ‘down’ day a week to a whole month of down days. I have lost my quality of life and pretty much my social skills. My venturing now is from my bed to the bathroom, kitchen, and possibly my recliner if I’m not feeling too dizzy.

I have three saints in my life, my husband and my two girlfriends who take care of me. I know that God has a plan for my life and I have faith in knowing that I’m going to feel well again some day. It has been a long and expensive road to travel to get to this point. I am not looking to have Cushings but it is a diagnosis that finally fits completely. I’m looking forward to meeting the support group.

Love you all and thanks for taking the time to read my post.

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Bev, Undiagnosed Bio

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golden-oldie

 

Hello, my name is Bev I have 8 kids yes that is not a typo :)…

I have been fighting whatever is wrong with me for the last 16 yrs.  I have been diagnosed in the past as having a thyroid problem. That was always changing( hypo to hyper thyroidism) and now I am told my thyroid is fine. I was diagnosed with fibromyalgia and PCOS.

Now in  the last year I have gained about 100 lbs. …No matter what I eat or how much I exercise…. I recently went to the ER because of way more than usual water retention along with chest pain and shortness of breath.  They tested me for congestive heart failure, and that is not the problem.

After many blood test and etc. they have “unofficially” said I have Cushings. I go to see the Endoconologist in a week. I dont want to have this as I know noone else does! But it would be a relief to know what is actually wrong with me….. I am tired of this emotional and painful roller coaster my body has me on.

Confused and scared about what is going to happen.

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Kim, Undiagnosed Bio

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golden-oldie

Hello, everyone. Below is information from my introduction at Cushings-Help.

“So, about me…I’ve had various non-specific symptoms since I was a child and various specific diagnoses as an adult … hypothyroid, fibromyalgia, adult ADD (misdiagnosed and treated as bipolar from 2005-2008), chronic atrophic gastritis and chronic duodenitis (diagnosed via biopsy), colon polyps, non-celiac gluten sensitivity, sinus polyps, insomnia alternating with hypersomnia (sometimes I sleep up to 15 hours a day), plus an REM sleep disorder (REM sleep latency 287 min/378.5 total sleep time, REM sleep 37.5 min with 12 upper airway resistance episodes during that time) … and the list goes on. I have multiple vitamin deficiencies too (C, D, zinc and iron) and other abnormal blood levels (low arginine and dopamine, and high folic acid, glutamine, glycine, norepinephrine and ornithine). The levels that made some people suspect Cushing’s (vs. PCOS) were my DHEA and Testosterone. My highest DHEA was 1342, lowest Free T is 0.2.

From a CT scan of my abdomen in August 2011, I know there’s a “probably benign” lesion on my liver, a cyst on my kidney (plus medullary sponge kidney), a 10 mm cyst on my ovary and an umbilical hernia. My PCP considers all of this normal. Also, I’ve had four fractures as an adult (two in 2008 alone, one that required surgery) partly because of poor balance and coordination (frequent trips and falls, dropping things, etc.). I was through an EEG and 24-hour EKG because I fainted and collapsed on the sidewalk outside of my kids’ school at the end of December 2011. Those tests were normal.

…In terms of my physical appearance, I don’t have stretch marks but the shape of my face changes almost daily. It’s been hard for me to piece together a visual timeline since I hate having my picture taken and therefore, steer clear of camera lenses. (NOTE: I did manage to put a timeline together…You can find it here. http://cushings.invisionzone.com/index.php?app=gallery&album=408) How sad is it that I have very few pics with my kids because the person I see in the mirror is a stranger! I don’t even resemble the person I once was…my weight just continues to creep up regardless of how little I eat or how much I exercise. The fatigue has gotten REALLY bad lately and my tolerance for any physical activity is gone. I have regular shortness of breath and my blood pressure and heart rates are all over the place. Just the thought of doing stairs to throw in a load of laundry is overwhelming. And after showering to get ready to go somewhere, the only place I’m ready to go is back to bed. I also have a small buffalo hump and my neck is very thick. 16″ necklaces that used to fit comfortably won’t even close now.”

January 30, 2012

Today I had an initial appt with an endo who ordered the following tests:

Gave blood today to measure:

UR/CS/CBC/FT4/T3RIA/TSH (have confirmed hypothyroid; TSH has been remaining high even on 125 mcg Synthroid)

GONAD #1

Thyroid Antibodies

Vitamin B12/Folate

IGF-1 (have two kids with GHD being treated, third child is being tested; endo suspects IGF-1 may come back low)

IGF-BP3

ACTH

Cortisol

Cardio CRP

DHEA (history of high DHEA … 554, 717, 1342)

Ferritin

Prolactin

Free Testosterone (history of low Free T)

Vitamin D, 25 (have confirmed Vitamin D deficiency, rechecking levels)

Vitamin B1

Vitamin B6

Vitamin C

Tuesday, January 31 having DEXA scan of spine, hips, and right wrist and ankle (have had multiple fractures on right side…cuboid (foot), anterior process (heel), elbow, wrist).

Thursday, February 3 having nerve conduction study because of peripheral neuropathy in hands and feet

Friday, February 4 meeting with opthamalogist for vision testing (peripheral vision is diminished, causing dizziness, balance issues, resulting in falls)

I’m waiting for endo’s order to have an MRI of the pituitary. Endo reviewing report from the CT scan I had in December 2011 after my fainting episode/collapes on the sidewalk outside my kids’ school. The report says nothing except there were not hemmorages, so anticipate order for MRI will be coming soon.

This seems like a lot of tests, but I think the endo wants to determine where to dig deeper. The nurse practitioner asked a lot of questions that led me to believe she may have been suspecting Cushing’s and/or growth hormone deficiency. And they were interested in a timeline I’d put together demonstrating my eight month experience on Ketoconazole, which allowed me to shed weight and caused an improvement of symptoms. (The weight went back up and symptoms flared off Keto as posted above.)

I guess I’m in a waiting pattern now as the endo pulls together the results of all these tests and decides which tests will be next. The only next test that was discussed was GH stim testing, again leading me to believe the endo may think he’ll uncover that issue, especially since I have two kids who are GHD. (My son also has smallish pituitary and chiari malformation and my daughter has a Rathke’s cleft cyst.) I know a lot of the standard Cushing’s tests are missing from the above list, but this is a starting point. I’ve never had such a full endocrine workup, so at least I’ll have a baseline.

I’ll post more about my journey as my test results start coming in.

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Debbie (flawdnotclawd), Steroid-Induced Bio

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I am a 55 yr. old female recently diagnosed with Cushing’s.

Previous diagnoses included: diabetes, HTN, asthma, Chronic Fatigue, Fibromyalgia, high triglyc/choles., IBS. Still in process of testing to determine cause. Had multiple steroid epidurals in past few years. Have had symptoms for over a year.

Doctors misdiagnosed Cushing’s as Chronic Fatigue, Fibromyalgia, anxiety, depression, hypochondria. So fed up with arrogant judgmental doctors.

Have a great endo now who diagnosed Cushings and doesn’t treat me like I’m nuts.

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