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Voices from the Past: Patty L (Answer hungry), Undiagnosed Bio

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I’m a 33 year old female.  I have 3 young boys ages 8, 5 & 2.

About 1 year ago I started suffering from chronic fatigue to the point of crying halfway thru my work day not knowing how I was going to make it thru the rest of the day.  I went to my primary physician who stated I might need to have my thryroid rechecked.  I was previously diagnosed with hypothryroid but on a real low dose of Levothryroxine.  He ran some blood work and the test came back normal but with deficiencies in my B-12 & Viamin D.  He suggested I try a multivitamin.  I went out and splurged on the best vitamins I could find but they were of no help.

I returned after experiencing palpitations and dizziness.  I was then diagnosed with Vertigo and given meds that only made me more sleepy so I stoped taking them.  I noticed I was gaining weight even though at this time I was running 3 miles 4X/wk and loging in my meals.

My PCP thought I was suffering from depression because I cried at one of my appointments out of frustration because I just waned to make it thru a day without feeling tiered.  He suggested I take a sleep study test to check for insomnia.  The test came back cleared saying other than fallling asleep faster than usual patients nothing else was wrong.

I was referred to a cardiologist becasue I was also feeling extremely cold  and had a difficult time performing the same tasks I was able to do wihtout any problems months earlier.  I kept insisting I had a lot of the syptoms I had previous to start on meds for my hypothyroidism but because the blood work came back normal they said they could not change my meds.

I read somewhere about secondoray hypothyroidsm and requested a referal to an endocronologists.  My PCP felt there was no reason as everything came back normal but I pleaded until he gave in and authorized my referral.

I went to see my endocronologist for the first time and for some reason after telling her what I was experiencing she told me my issues could range from anemia to Multiple Sclerois but she also wanted to check for something extremely rare…..did not give me a name.  She requested blood work and sent me home with 3 cottong swabs she wanted me to saturate between 11 pm – 12 am, stick them in the fridge and return to their lab as soon as I was done.  I did this and she called me stating the tests came back abnormal and she wanted me to do another tests.  She was very vague about providing me with information other than assuring me that what she was testing me for was extremely rare and it was probably false results.  She told me not too panic and just go about life as usual.

I came home with a 24 hour urine collection container and another round of saliva tests.  I got a call from her nurse stating everything was normal.  I insisted I wanted a f/u visit with the Dr.   At the time of my visit she stated she was happy I had insisted on another appointment because the saliva test came back abnormal, but only on one of the swabs.

This time I came prepared with a list of symptoms and my own depression screening test (I’m a social worker and knew my some of my symptoms were similar to those of people suffering from depression), she took copies but again told me not to worry.  Well the more she told me not to worry the more worried I became and started researching Cushing’s the extrme rare disorder she had been telling me not to worry about.

My husband came across a website called Cushing’s with a Moxie, when I started reading the blog I started to cry I felt like finally someone understood me.  I still don’t have an answer by my Endocronologist but in my head I think I’ve figured it out and as silly as it sounds I’m wishing this is it, finally an answer to my symptoms.

~~~

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Voices from the Past: Heather P (Heather), Undiagnosed Bio

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undiagnosed 5

 

This is about my husband…2010 diagnosed with rheumatoid arthritis (one day he was fine, the next day he was in agony type onset). Was placed on methotraxate, prednisone, humera, actemra, etc. for the next 4 or 5 years. None of the bilogics worked for more than a month. Pred and pain meds became a mainstay for about 5 years. I started to question the accuracy of the diagnosis and was patted on the head and basically told to forget it and go my merry way and accept it. We were always told the bloodwork “was fine. no issues with the exception that when Neal hurt, his inflammatory blood factors were low..which was odd but it is his body”. It was left at that. We basically gave up the Rheumatologist in 2015 as it was getting us nowhere and nothing was changing. Something was still wrong.

Late 2015, his weight gain went crazy. He developed moon face, the traditional hump on the back of his neck, huge adbdomen with tons of stretch marks everywhere, no energy, listlessness, severe pitted edema, paper thin skin, spots all over his legs, rash on his chest, pressure on his chest and lungs when laying down, sleeping all of the time (as in 2 seconds after he hit is recliner), sleeping solely in the recliner, lower extremety severe weakness, nausea, etc. This led to congestive heart failure in Jan 2016 due to the extreme fluid retention. Placed on lasix, indomethacin, blood pressure meds. Cleared by heart doc two weeks later to return to work.

Still no results…..still spiraling downhill. March 2016 Get steroid injection in the knees as he cannot walk due to the weakness, swelling and pain. Vision issues are now added to the list of continuing issues.

June 7, 2016. Go to another doctor out of state and get more bloodwork done as we cannot take it anymore. They take more blood. Doc does comment on his paper thin skin and mentions that is usually from steriod use. Neal passes out and has to be taken out of the office in a wheel chair as he cannot walk due to the extreme weakness and pain. Increase lasix to 2 a day and get prednisone.

I have finally had enough. I cannot stand seeing my once vibrant active husband just laying there…just existing….just barely…. I make a comprehensive list of all of his symptoms, make a graph of his blood work results from 2010 to present…what I found was astonishing…his results were NOT ok. I took him to the local doctor and pleaded and begged for him to figure out what is wrong with my husband. I initially go thte ole “I don’t want to step on anyone’s toes” etc. as we had just gone to the new rheum. doc a week ago. He ordered a new echocardiogram and it was clear. Added new drug. Neal had an allergic reaction and was put on high dose (50 mg daily) of prednisone combined with zantac and zyrtec for 3 days.

A week later, his bloodwork came back…gout, hypothyroid (based on symptoms), severe internal infection. Add more meds.

Go to eye doc and get the diagnosis of cateracts in both eyes. Doc felt it was due to prednisone due to the rapid onset. Surgery scheduled for next week.

In the meantime, Neal has gone even more downhill….now he feels like he periodically fractures a rib, a finger, etc. Even more stretch marks are present. He is listless and cannot function. He cannot walk. Add decreased urine output even on the lasix). He just lays there stuck in a shell. He has missed so much work in the past 2 weeks. He lives as one would in a nursing home…I take care of his daily needs. He cannot.

I go back to doing my research online. Cushings Syndrome pops up…OMG….Between all of the biologics, the up and down on the prednisone, zyrtec, steroid injections , etc. has sent him into the major downward spiral that he is experiencing…..Steroid induced Cushings along with hypothyroidism (might even be hashimoto’s..too soon to tell). We came to this conclusion at 2 am this morning. To further prove this, he took an additional 10 mg of prednisone immediately. I know…he refused to go to the er…he wanted to prove it one way or the other. (I did tell him that I was gonna invoke my medical poiwer of attorney and have him taken out by ambulance on tuesday if not sooner if this didn’t have some impact). Well…he can WALK this morning. He actually went to the bathroom to use the toilet….THAT is a huge deal to us. He is in pain but he can MOVE!!!! He went to work this afternoon as well. He has to have his cateract surgery so he can see to work (we will lose our home…company house…and everything else if this is not done asap). That is his priority. Once the surgery is done, we will be headed back to Nebraska to approach the doctor there about our findings relating to Cushings Syndrome.

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Kristine (Kristine), Adrenal Bio

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18 months ago I underwent an adrenalectomy (L) for a benign mass. My cortisol levels were slightly elevated, all tests suggested sub clinical cushings.

Before the surgery I felt great, no symptoms other than easy bruising, bleeding gums and mild hypertention. In fact, the reason I went to an endocrinologist was because I thought i had a hypothyroid issue and my fasting blood glucose was always around 110. The adrenal mass was an incidentaloma during a scan of my pancreas/abdomen.

During the surgery I suffered a positioning injury  to my shoulder, arm, and hand. Permanent nerve damage and horribly painful to this day. My initial post op replacement dose of cortisone was 10mg twice a day even though the surgeon and my endo were quite aware of my injuries. I felt like I was dying. Short of breath, chest pain, no sleep ever to this day.

Finally after 6 months a doctor at the hospital were I worked as an RN took over and directed me to pain management and ordered MRIs. Torn muscles, bursitis, tendonitis carpal tunnel and ulnar nerve entrapement etc….Since then i have had to change endos because mine has become rude and my appointments brief. I make 0.5 cortisol, nothing.

I am still on disability and will be terminated permenently in September. Every morning I lie there writhing in pain, short of breath, crying. I am so lethargic once I force myself up I bump into things. Some days I can’t get up at all. All pain management wants to do is inject steroids. I have had 3 nreve blocks and a spinal stimulator trial which did more harm than good. I KNOW I am in steroid withdrawl but what do I do now?

It’s been 18 months and I can’t find an endo who will pay any attention to me…………….I  also believe I still have a thyroid problem. My levels are ‘borderline’ just like my cortisol was but the symptoms are all there and very obvious. Plus my cholesterol ,untreated, is 295. I don’t eat junk at all. never did.

My meds are Hyzaar, lipitor, neurontin, calcium, prozac,and 10mg of cortisone a day. I ditched the vitamin d3 because they only check my D-25 not 1-25 D and I am afraid of having dysregulated Vit D metabolisn which increases inflammation…..

I don’t know what to do. Help 🙁

Kristine

~~~
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Lisa (Lisa), Undiagnosed Bio

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undiagnosed4

 

44 yo female
have been overweight for a while
always fatigue, muscle aches, pain/joint all I related to weight
only history is hypothyroid been on synthroid since 15ish
recently had UTI that was resistant to lots of abx then developed a bronchitis to pneumonia
then the UTI came back was on prednisone at start of pneumonia for 14 days then developed pain in left side and arm cardiac negative and high blood pressure out of blue
been worked up for carcinoid syndrome – neg
VMA and metanephrine – Neg
Lupus – neg
they have no idea why bp so high all of sudden i have palp with it
always notice muscle weakness I never have any strength
extremities tingle at times
but face has had horrible red butterfly redness dr doesn’t like
now wants me to be worked for cushing going to do 24 urine tomorrow
but i have had ct scans of abd and chest and one ct angio of chest showed a tiny tiny adenoma on left adrenal gland the radiologist said so small that they may not even comment on it
i do have the fat in neck/ shoulder/back
i just feel off not myself almost shaky inside i have no desire to do any activity although i know i need to

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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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Sheena (cuddlybeena), Undiagnosed Bio

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I have had 3 blood tests one high one slightly high one normal

My endo saw me for 10 mins and said he wanted to rule in or out Cushings He has now sent me a letter stating I have not got Cushings and hopes Im happy ???

I have al the signs and symtoms of Cushings and 6 months ago was put on treatment for Hyrpothyroid which is all under control I am in a lot of pain in my legs and headaches and my speech is glitchy

before this I walked upto 5 miles a day I just want to be normal again

Should I go private and get another opinion ???

Thanks to everyone out there and to this website 🙂

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Elaine, Pituitary Bio (Golden Oldie)

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golden-oldie

 

I am 51. I was diagnosed hypothroid 25 years ago.

I was diagnosed with empty sella this year – by a neurologist analyzing my migraine headaches. He has ordered a prolactin test which I will have done when I see an endocrinologist in a about a month.

My weight had been pretty stable for years, now I seem to be gaining steadily and my breast are getting huge … I know … but it’s not funny to me because I can’t wear most of my clothes any more.

Also I am having anxiety attacks, my speech and vocabulary seem to be affected, my ankles are swollen. My internist has been attentive to my concerns and has been providing referrals to specialists. I feel as though I am losing my mind, my thinking is not sharp and I feel like crying all the time.

What happened, where is the real me? … and is this Cushing’s or something else?

 

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Cynthia M, Undiagnosed Bio

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I am currently being tested for CD because after exhaustive research on AVN (Avascular Necrosis) related to other diseases. I have four known areas of AVN & after seeing the symptoms of CD, I realized may have this.

I also have numerous other diseases Lupus, Sjgrens, Hypothyroid, High BP, Arthritis, Fibromyalgia…

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Kara E (Pollyanna Pitbull), Adrenal Bio

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51 year old female.  Diagnosed in the last 3 weeks with Cushing’s, Lupus, APS and Osteoporosis.  I am on meds for diabetes, hypothyroid, hypertension, high triglycerides, and DVT.

Looking at pix my providers think I have probably had this for over a decade.

Awaiting next steps and treatment at Emory in June.

Found your sites and am so grateful to read information that is informative, hopeful and honest.

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Ryley (Sunshine), Possible Adrenal Bio

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golden-oldie

 

A Golden Oldie originally from Monday, November 17, 2008

I am currently in diagnosis – Finally got fed up and met with an endo. who is wonderful – she let it slip that she thinks that my problems are not only associated with my thyroid (hypo) but that I have an adrenal problem. She set up a myriad of tests which I have subsequently completed (in a record two days) and have done what one should NEVER do – go look up symptoms on line.

I have ALL of the sympoms for a Cushie – from the over emotional bit to the hump – Just Lovely! I just wanted to drop a note as I am feeling very overwhelmed by all of this. I realize that I have not been diagnosed, am only at the testing phase and should just calm down and be rational but it is harder than it appears.

I am alone with this and it is freaking me out. My family is in another state, and, when I talk to them I feel I need to put on a brave face, I always have when major issues occur, don’t know why I do, I just do. I know that if I asked a family member to come to me they would, no questions asked but then I know they would just be watching me like a hawk the whole time for G-d knows what to happen.

All of your posts have been extremely helpful to me and are helping me to bolster my spirits. It is heartening to know that I am not a crazy person and that there are support systems out there for us. I will write again when I get a diagnosis – Hoping for the best!!
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