May 18, 2019
Fibromyalgia, Other Diagnosis, Thyroid, Undiagnosed arthritis, Avascular Necrosis, AVN, Blood pressure, Fibromyalgia, hypothyroid, Lupus, Sjogrens, undiagnosed 1 Comment
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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April 1, 2019
Adrenal, Diabetes, Other Diagnosis Adrenal, cushing's syndrome, diabetes, DVT, hypertension, hypothyroid, Lupus, osteoporosis Leave a comment
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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February 5, 2017
Adrenal, Hypothyroidism, Other Diagnosis, Undiagnosed 24-hour urinary free cortisol, adrenal adenoma, Blood pressure, Carcinoid, hypothyroid, muscle weakness, pneumonia, Prednisone, Synthroid, tingling fingers, UFC, undiagnosed, weight 1 Comment
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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July 14, 2016
Hypothyroidism, Other Diagnosis, Thyroid, Undiagnosed Adrenal, Buffalo hump, emotional symptoms, endo, hypothyroid, thyroid Leave a comment
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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July 4, 2016
Hashimoto's, Male, Other Diagnosis, Undiagnosed actemra, Buffalo hump, cataracts, congestive heart failure, fatigue, gout, humera, husband, hypothyroid, listlessness, male, methotraxate, moonface, pitting edema, Prednisone, Rheumatoid Arthritis, Stretch marks, thin skin, vision, weight Leave a comment
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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May 1, 2016
(SLE) Systemic lupus erythematosus, Addison's Disease, Adrenal, Adrenal Insufficiency, Adrenal Surgery, Hypothyroidism, Other Diagnosis, Pituitary, Thyroid, Treatments adenoma, adrenal crisis, Adrenal tumor, Adrenalectomy, brain fog, cortisol, depression, endocrinologist, fatigue, hydrocortisone, hypothyroid, irregular periods, Levothyroxine, migraines, mood swings, Neurologist, pituitary, Propranolol, Psoriasis, Ramipril, sinusitis, unilateral, weight, Zoladex, Zolpidem Leave a comment
Hmmm, where to start? “Hello” to one & all, & how I wish I had discovered this friendly & helpful site 3 years ago. Ah well, better late, than never, eh?
Anyway, back to me : in a nutshell – 47 year old single female, 87kg, 5’4″, Post Cushings Syndrome through Adrenal tumour & subsequent unilateral Adrenalectomy I’m now Hydrocortisone (HC) dependent , Hypothyroid (just switched to NDT & T3 combo from synthetic T4 & T3), Pituitary microadenoma.
Now for the details…..are you siting comfortably? I’ll try to keep to the plot ! Suffered with bouts of fatigue & depression since my early 20’s. Spells on different types of anti-depressants which didn’t help me much.
Skip to 2004,weight going up despite no change in eating/excercise habits (those intermittent years were filled with seeming to pick up every bug & cold that was going around & weirdly taking longer than others to get over illness) prescribed Zoladex implant to relieve very painful & intolerably heavy periods, along with severe mood swings.
Tiredness is now just an unwelcome fact of life for me, weight still increasing gradually. Developed Psoriasis.
June 2012 diagnosed Hypothyroid after completely breaking down in GP’s surgery & being referred to Endocrinologist. Signed off work for foreseeable future. Prescribed Levothyroxine, Zolpidem & Ramipril, weight goes up more. More investigations pinpointed extremely high cortisol levels, (I have all the physical signs of Cushings at this point – but Endo has not even mentioned the condition to me!)
Meanwhile referred to Neurologist for my now weekly migraines, prescribed Propranolol & he & Endo agree on cranial MRI scan to help both of their cases with me. Full body scan also booked. In the same week I learnt that I had both a tumour on my right Adrenal & also a Pituitary micro-adenoma. More tests which determine that it is the Adrenal tumour causing my Cushings (oh, & I had to ask Endo if what I had was Cushings – as he had still not even uttered it’s name to me! )
Unilateral Adrenalectomy performed Aug 2013 (had to fly 200 miles to have it done – alone – haven’t told my family who live 300 miles away about either tumour).
Post op weaned down from 40 mg to 17.5mg HC per day, over few months. Feb 2014 went into adrenal crisis & rushed to hospital – remaining adrenal obviously not working yet.
Since then, have had 9am bloods every 2 months & follows up with Endo & still no sign of life in Adrenal. Have lost only about 4kg max since the op – still obese & unable to loose weight & still have the classic Cushings apple shape.
In Aug 2015 returned to work full time, in a downgraded role, & have to up dose to 20mg HC just to get me through working day. Begged Endo for T3 to try alongside the Levo & was granted in Nov 2015 . Slight improvement at first, but short lived. Also i asked to come off Zoladex implant, to see If that side of things are any better yet. No period yet. Shattered & aching, have no social life or energy & spend weekends resting in lieu of working week & in prep for the next one, waning to be alone.
Grasping at straws to feel better so am now (since mid April 2016) self medicating on NDT & T3 as Endo does not support prescribing it. Endo does not want to see me now until Sept 2016 , when I am due an MRI again to check on the Pituitary tumour size/growth & have next 9am bloods.
That’s about it medically………quite enough for me, thanks ! P.s I have bad brain fog (& also Sinusitis at the mo) so may well have missed something & will probably remember it in about 3 days or so !!
Thanks for reading & welcome to my world : /
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October 10, 2015
Empty Sella, Golden Oldies, Hypothyroidism, Other Diagnosis, Pituitary anxiety, empty sella, headaches, hypothyroid, migraine, weight Leave a comment
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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May 14, 2015
Cyclic, Hypothyroidism, Undiagnosed Agent Orange, appendix, Asperger Syndrome, bronchitis, Buffalo hump, congenital, cyclical Cushing's, diarrhea, dioxins, energy, episodes, fistula, gall bladder, gangrene, HIV, hypothyroid, loop ileostomy, perineal abscess, Prednisone, rectal-vaginal abscess, weight 3 Comments
Born with congenital hypothyroid (which was undiagnosed until 45). My thyroid is the size of a lima bean!
Discovered that I was exposed in utero and as a toddler to sky-high amounts of dioxins — i.e., Agent Orange, along with what has now been diagnosed as Asperger Syndrome. Through college, I was very athletic, super-strong (stronger than many men and could squat-jump HUNDREDS of pounds) and was an expert skier. I also played co-ed soccer, despite respiratory wheezing. I just dealt with it.
I have had episodes of suspected Cushings for about 25 years.. It felt like immediate-onset mono. I would have tons of energy all of a sudden, turn into a cleaning monster and get loads done (for example, cleaning out and rearranging my large storage unit) only to crash a week later and barely to get out of bed — coupled with weight gain of 40lbs + each episode.
At the lapses between episodes, I could diet and force myself to exercise, lose weight… but each time it was worse. I would gain 40, lose 35 — so I started losing ground. When given prednisone for bronchitis several times, when pregnant, and when given prednisone for systemic poison ivy, the same symptoms came back… but with much higher severity.
At the same time, I had multiple surgeries for perineal abscess — which was lanced and turned into a rectal-vaginal abscess. This would never heal.. I had 10 fistula flap, pig plug, cauterizations — none of which healed. No one could figure out why I wouldn’t heal. They tested me for HIV, but that was negative — so they had no answers. I seemed almost allergic to myself.
My surgeon talked me into a “temporary” loop ileostomy, promising that with no food going through, the fistula would heal. No dice. The ileostomy broke down, herniated, developed gangrene, and I ended up losing my appendix, some upper and lower intestine, and my caecum (which absorbs bile back into the body), and has resulted in terrible malabsorption problems and chronic diarrhea. Because I wouldn’t heal, the ileostomy was made permanent (my worst nightmare). Five years later I found a doctor to reverse the ileostomy. However, he noticed non-cancerous lesions on my intestine. Biopsies revealed nothing remarkable. I tested negative for celiac, for Crohn’s… just “cranky bowel”. While the takedown/reconnection surgery went well, my surgery site (a straight line from sternum to pelvic bone) would not heal internally and I herniated in 8 places. A piece of mesh was placed to cover the entire site. At the same time my gall bladder was removed because it had reportedly atrophied.
Since that last surgery I have gained 60 pounds, in 30 pound increments. One was immediately after the surgery, the other was over Spring Break. I got a lot done, felt like superwoman…all the while eating LESS than usual and drinking lots more water, but gained 30 pounds in a week, without swollen ankles. I had developed stretch marks in my armpits.
Since this started, my body has changed shape, places it stores, my feet have gone up 3 sizes, and my skin has turned kind of orange. I look like I go to a cheap tanning salon. The small buffalo hump I had 10 years ago has turned into a full-blown travel pillow which goes around the base of my neck. It looks a bit like my head is coming out of a vagina.
Don’t know what else to say. I can tell you what endo’s NOT to go to… But I have yet to find one who even believes cyclic Cushings’ even exists. I am trying not to dwell on the underlying question: Am I going to die of this before I get some real help?
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November 11, 2013
Bipolar, Fibromyalgia, Golden Oldies, Hypothyroidism, Other Diagnosis, PCOS, Thyroid, Undiagnosed ADD, adult ADD, Bipolar, Blood test, chiari malformation, cortisol, CT scan, DEXA scan, DHEA, dizziness, duodenitis, Fibromyalgia, Folate, gastritis, gluten sensitivity, Golden Oldie, growth hormone, hernia, hypothyroid, IGF-1, iron, kidney, liver, MRI, ovary, PCOS, peripheral neuropathy, Polycystic ovary syndrome, polyps, prolactin, Rathke's cleft cyst, REM, sinus, testosterone, undiagnosed, Vitamin B-12 Deficiency, Vitamin C, vitamin D, zinc Leave a comment
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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November 4, 2013
Hypothyroidism, Other Diagnosis, Undiagnosed Blood test, headache, hypothyroid, leg pain Leave a comment
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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