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Dana, Undiagnosed Bio

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Well, I’m 29 now and still undiagnosed. If Cushing’s is what’s wrong with me, I have had it for quite a long time. I gained a lot of weight (60 lbs) the last 2 years of high school (17-18 years old). I lost 30 lbs at age 19 (I just didn’t eat much) and have since gained 70 lbs.

But, I really wonder if this all began when I was a child. However, I was tall, and Cushing’s is supposed stunt growth, so who knows. I was always the tallest kid (male or female) until about seventh grade, and ended up being 5’11”. When I started school I suddenly went from a fairly normal weight to having a giant, hanging belly with stretch marks. I remember by first grade (age 7) wondering where all this fat had come from. My parents blamed it on sitting in school all day, since I was an active child and ran around all day when I was younger, and we ate healthy meals. So, my parents put me in every sport possible: softball starting at age 6, basketball (2 teams) at age 9, soccer at about age 9, volleyball at age 12, golf at age 15. I would go on numerous diets, with the Scarsdale diet working well (high protein, very low calorie, but hard on my gallbladder), and I lost a lot with a 1500 calorie/day low-fat diet. In middle and high school, I was doing 2 hour sports practices (mostly cardio the entire time) every day, year round. I think my face has looked round since elementary school, and pictures from 2007 show a buffalo hump. I sweat more than everyone else (my Dad’s theory was that I developed more sweat glands because of all the sports).

My periods have always been irregular (starting at age 10), sometimes with 4-5 months in between, until I started birth control pills at 19 to regulate them. We figured it was because of stress or all the sports. I had fairly bad acne from about age 12-19, and since then usually still have a few zits, although now I have more body acne. My stretch marks are everywhere, along with spider veins, but the stretch marks are only pink and about 0.5-1 cm wide at their worst. Freshman year of college, I developed a cyst at the base of my tailbone the got horribly infected (I could barely walk) and it had to be surgically removed, leaving a big hole where my tissue had to grow to fill it (my surgeon told me it would take 6 weeks to heal and couldn’t understand why it took 6 months instead). I had many ear infections as a child (pink amoxicillin is yummy), and since age 20 get several sinus, ear or throat infections each year, requiring antibiotics.

Starting in middle school, I would get horrible acid reflux that would keep me up all night (in the days before all the drugs for it, so I really can’t stand Tums anymore). It went away for awhile, and then I started getting bad abdominal pain Sophomore year of college, like cramps unrelated to periods, and skipped a lot of classes because of pain and fatigue. At that point, I thought I either had mono or was severely depressed, because I was just so tired and wanted to sleep all the time. The pain went away after 6 months, but then I developed severe stabbing pain (age 24) in first my lower and then middle and upper abdomen, first diagnosed as IBS and finally after 3 years as a collapsed gallbladder. By the time it was removed, I had recurrent mono, a sinus/throat infection that required 3 rounds of antibiotics, was very fatigued and could barely walk. I still have some abdominal pain, maybe from post-gallbladder surgery syndrome or acid reflux.

I have always gotten stiff, sore muscles, which I attributed to the sports, but now I get even more stiff muscles. I also started getting joint pain in the last few years, it continues to get worse. Even in third grade the teacher noticed my extremely tense shoulders. In the last several years I have also started to become impatient, irritable, moody, and have anxiety and a quick temper (I was extremely even-tempered and calm until after college). I am also getting fuzzier mentally, with a bad memory, lack of concentration, and easily distracted, and often I just feel like I am loosing my ability to think and becoming stupid. Sorry to be so long, there are many more symptoms but you get the idea.

 

From the message boards.

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Beth, Undiagnosed Bio

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I’m being tested for Cushing disease, after having some symptoms, one doctor says I don’t have it because the first Urine test is normal, but I’ve since done another urine test which is higher than the normal, I live in France the normal is 10-50 and I’m at 67 !

I’m still waiting in blood results, I’ve been suffering from pain behind my eyes like someone is pushing my eyes out , blurred vision, sinus like symptoms but not sinus infection, urine infection, skin infection, high blood pressure, fainting, headaches, headaches, extreme tiredness ! Etc etc

I’m worried that I will be pushed aside again and told it’s in my head.

I would love help in helping my doctor in the right direction… please , I’m becoming depressed and stressed that I don’t feel well and no one will help me.

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Joanna, Undiagnosed Bio

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Im a 41 year old female currently in the very beginning stages of testing. Im pending results of a 24 hour urine cortisol and will be completing the 1 mg dexamethasone suppression test shortly.

My symptoms are buffalo hump, thin arms and thinner legs, fatigue, extreme leg aching, skin feels loke its sunburned, high triglycerides, high cholesterol, weight gain, hair growth on face, the list goes on and on and on.

I was tested for adrenal issues in 2017 and administered the 1 hour ACTH test which came back normal. At that time i was diagnosed with hypothyroid, and elevated testosterone. I recently changed health insurance and had to find a new PCP. At my initial appt i mentioned my buffalo hump was getting worse.

I had a ultrasound done where the “Findings suspicious for hypertrophy in the neck fat pad which could represent fat redistribution syndrome”. These findings were what kicked off the Cushings testing. Ive gained  40lbs in the last 4 months with no change to my diet.

Im just praying that i can find some answers because Im miserable and want to live a very full and productive life.

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Angelique L (Angelique), Undiagnosed Bio

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I am 54 year old woman with no kids. I had a hysterectomy at age 44 and went through the change. I was slightly overweight at the time and went on a healthy weight loss programme over 5 years and got down to my goal weight. Life looking good.


Fast forward to 2019 and I got a very painful and swollen pituitary gland infection on the right side of my face. Admitted to hospital and administered 60mg Prednisone intravenously. Then prednisone for 1 week tablet form after I left the hospital. No actual tapering off, just a prescription of 20mg daily.


This when the problems started, after 2 weeks my moon face appeared, bloated and fatigued I went to my GP. He said Cushings probably.


2 years later I am 60lbs heavier, distinct lump at the base of my neck, fat on my upper arms and between my thighs, belly, chronic fatigue. The weight is extremely stubborn. My sex life is dead, my relationships are foundering and my depression and anxiety is managed by seclusion and sleeping.


I am desperate to find a solution, but fearful my search will tell me I am damaged and have a short life expectancy.
So I came here perhaps to find support. Too many of the stories, sound just like me.


Take care all. Thanks for reading.
Angelique

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Tanya (Tanylou), Testing for Cushing’s

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Testing!

Hi I’m a 51yo mother of four kidults and 2 grandsons.

I havea few health issues including diverticular disease, hypothyroidism, hashimotos autoimmune thyroiditis (including multinodular gland), secondary hyperparathyroidism, non alcoholic fatty liver, high cholesterol, major depressive disorder and social anxiety and borderline diabetes.

I’m currently undergoing tests for cushings due to 2 recent elevated cortisol levels on a 4 point saliva test and morning cortisol blood tests. I have a hump, puffy face, signicant weight gain, ushing, excessive sweating, anxiety, skin issues (granuloma annulare, new stretch marks, rashes).

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Shea S (Shea), Undiagnosed Bio

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I am a 54-year-old woman who over the past two years has developed a buffalo hump and gained 60 pounds.

Initially, I had hair coming in heavily but now I seem to be losing it: my eyebrows, the hair on my forearms, facial hair and now the hair on my head. I hurt… A lot!

I have trouble sleeping, I am moody and I have no “absolute zero” interest in what was once a vibrant sex life. I’m confused and so done with doctors telling me I just need to lose weight.

My self-esteem has bottomed out at zero, going from my very active fitness oriented lifestyle to an often limping, painful, moon faced, overweight, buffalo humped middle-aged woman.

Aaaaaggghhhh!


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P. Hyde, Undiagnosed Bio

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48 years old. Male. Had prolactinoma pituitary tumor in 2000, it enfarked. 7x8mm. On testosterone replacement since as it destroyed my bodiea ability to produce testosorone.

Started what appeared to be a battle with Cushing’s symptoms fforin 2012. Shown all symptoms of episodic Cushings. Finally ain 2018 a new 4mm mass appeared on my pituitary midline and is growing.

However I have only been able to get just one positive saliva night time cortesol test so no one will look at Cushing’s. I am taking 1.5 mg of Klonkpan daily and think it may suppress the cortesone and squew the labs especially the suppression test. At this point I can feel the cortisol Jump in the evening. The only thing that stops the terrible sick feeling is my scheduled dose of Klonipan.

I started a seveir crash in March or 2020. Hematacrits started rising uncontrolably and made it to 62 percent by August of 2020. Blood pressure is not controllable when episodic. By August made it to 190 over 120. Had a cardiac Event in September 2020 from all the symptoms. And had Gained 26lbs in 4 months. Fatigue and foggy thinking so bad I can hardly function when episodic. Episodic now most of the time. Can hardly work and body is done by 3 PM every day.

Each time I have a dextramazone suppression test I get a 3 to 4 day respit like the ACTH is reset and I feel normal and symptom free. My blood pressure returns to 130/80 and my life seams to be ready to go back together. This all from 1 MG of Dextramathasone one evening then I get 3 or 4 days if life back. One half a pill. No one can tell me if the Klonipan will produce false negatives and have not asked me to adjust.

My sleep cycle is from 11 PM to wake at 4 AM sick as a dog most days. The Serum cortisol levels they will not take until 8.00 A M. I am always feeling better by 8 A M. They will not adjust the time they take the suppressed serum sample and my result is always .8. They say if not over 5.0 they won’t consider surgery or treatment I’d any kind. My ejection fraction rate from my heart is now at 30%.(should be at 75% for a regular person my age) two more points down and I qualify for a heart transplant.

This is crazy. No one can figure out what is causing any of this but every symptom points to cushing’s. ESPECIALLY the symptoms all becoming acute when the Tumor appeared on the MRI.  I have been tested for virtually every illness known to man. My endocrinologist still believes it could be episodal Cushing’s and is supporting the tests. But no treatment. I am dying. I will surely be dead within one more year as they won’t provide a heart transplant unless they know the cause of the reduced ejection rate. So they throw drugs as me over and over and all the beta blockers and channel blockers almost kill me because I go off episode and my BP drops to 90/40.

But Without 3 positive Cortisol tests they won’t consider Cushing’s as even a possibility. Have been to every specialist you can see. Had every part of my body scanned. I am dying. My boys have not had their father in years now. My business has been hobbled as I am the CEO. Hiding my illness from competitors and over zealous vendors is harder than anything. Now I am finally losing all my best people because the promises I will be back to my old selve again no longer seam real when I am just fighting to stay alive.

One doctor claims it’s all sleep apnea. The sleep studies show MILD sleep apnea.  And they only showed that after the most current wild events and weight gain. Help. Please help. People need me. I am not afraid to die. But people need me. I serve so many roles and what I do helps thousands of people . I can’t be done providing in this life. I want to be a real Dad again. I am a shell of a man and dying. All the doctors tell us “when you find out what is wrong with you comeback and tell us so we can shift our treatment.” They have all given up on me.

Please someone Help. . Klonipan question is the biggest one now. Money is no object. I will give up everything and anything to have these years with my family. Even just a month of being myself before I have to go. Mayo clinic won’t take me because I don’t have the positive Cortisol x3.

 

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Sarah, Cyclical Cushing’s Disease

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Hi! I’m Sarah, I’m 15 and I’m from Brazil.

Last year my parents started to suspect that I had Cushing’s and now I’m very close to a final diagnosis. I’ve been feeling incredibly lonely and depressed so I created this account cause I though that if there was any place I would feel understood and not alone it’s here!

I don’t really know how this works but I’m very happy and thankful that this website exists!

Thank you so much for reading my bio! It’s very nice to meet you! I’m sorry you have to be here too but I’m sure we’re all gonna get through this somehow 🙂

Sarah shared more of her story on the message boards at https://cushings.invisionzone.com/topic/55512-introducing-myself/

NOTE:  Sarah included her email address.  For privacy sake, I am not including it here but if you want it, please comment on this post so that I can share it with you.

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Sara M, Undiagnosed Bio

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I’m confused and still looking for answers.

I’m a 47 year old female. Let me give you a little health history of me. Sorry it’s kinda long.

I had VSD, ventricular septum repair,  at age 2.5 . Was in/out the hospital up to this for congestive heart failure.  As a child I caught every round of the flu and strep throat every year. Was always on antibiotics for strep. The doctor we had then always talked about taking my tonsils but it never happened.  I

had chicken pox 2 times, once was very minor at a young age the second was as a teen so bad I had them down my throat with hallucinations high fever. I had measles once. Constantly had croup. As an infant I was allergic to dairy. My mom raised me on goat milk. I guess I grew out of it, I drink milk eat cheese ect with no problems now that I know of.

As a teen I was diagnosed with hypoglycemia. Was told to watch my diet and if needed, have a shaking fit, to eat a Hershey’s bar and drink a glass of OJ. If not I would end up going full diabetic. These periods of low blood sugar,  shaking fits happen off and on still. Never been rechecked into.

My biological father died from renal carcinoma in his early 40’s my early 20’s. Then I had emergency diverticulitis surgery. I spent a week in the hospital due to them not taking care of my hypoglycemia.  I had a “fit” and they accused me of being a drug addict.

Being diagnosed as having fibromyalgia helped me with medical bills and testing. They couldn’t explain my pains and issues so they doctor decided on fibromyalgia to get me a diagnosis.  Also I had a bout of what the ER doctor decided was 5ths disease. I was in my late 20’s. All my joints swelled up and bruised visibly with green and brown bruises. I had large welted and small bumpy rash all over my body along with a 100° temp. I spent a week in the hospital being tested for everything under the sun; lyme disease,  all STDs, and more.

Later on in my life I had carpal tunnel syndrome surgery on both wrists along with trigger finger surgery on my left thumb. Also a ganglion cyst removed from my foot. Lasik surgery on both of my eyes. My vision still isn’t per perfect. Seems to be getting worse. Also I have had chronic kidney stones since my early 20’s.  Lately they are not causing me too many problems.

I have been hospitalized 3 times for them. Mostly I just try to wash them out fast with fluids. I have recently begun a process to identify my stomach issues. They think I have IBD but not sure as this whole pandemic put everything on hold. Also I’m waiting to be rechecked for my heart. I have had a heart murmur all my life. My mom was told that it appeared to be a stitch that didnt take in my surgery.

Since medical has gotten better it was recently discovered that I have had a hole in the upper chambers too that wasn’t fixed. My current heart doctor was going to fix it but my blood pressure was too high for no real reason. I’m on 3 different pills for my blood pressure with no really definable effects.  It has come down a bit but still high. So we are keeping an eye on my heart with echos. Still waiting to get back into all this, waiting on this pandemic to settle down or..

Looking at the drawing with all the symptoms it looks like me, a big over weight belly and I feel like a hump back.  My weight is just going up and up. I feel like I’m carrying a 50 lb weight all the time. Making it hard to breath too.  Few years back I fell and dislocated my elbow into a T and jarring my shoulder and wrist. Now I have shoulder issues with deterioration of the socket and muscles.

Yes some of my issues are self inflicted, hazards of life.  The rest is just me. My mother and niece both have empty pituitary cells. My sister has Arnold Chiari  Malformation and has surgery for it. My brother was born with a cleph palette,  no hair lip. He had surgery to repair it by adding the roof of his mouth. He had expanding braces as a child but no issues as an adult. My sisters twins, girls,  are both autistic on the spectrum, one more so then the other. Also one of my brother’s sons is autistic on the spectrum. My grand parents,  on both sides, all had medical issues too.

My main question is does this even come close to sounding like any reasons to be checked for Cushing’s syndrome..?

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Roberta “Bert” P, Undiagnosed Bio

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Hello Everyone,

Like all of you I am in pain, gaining weight, have moon face, etc. I have had Fibromyalgia for over 4 years and am lucky to have a very good doctor for that who is a specialist in his field-Dr. Pelegrino.

However for the last year or so I have had pain that is more than the tender points and general fatigue you get from Fibro. We started giving me cortisone shots every 5 weeks or so for the “bad” areas, but the “bad” areas are worse now and have enveloped my muscles to where I don’t know what to do. My fingers are aching just typing this. Does anyone else experience this? Do you use the thing that you can talk in and it types? I have so many questions but will have to ask more later.

My main question is about this horrible tightness and pain to turn my head-is this a symptom? I have had it for more than 2 weeks it is from the base of my skull to my shoulder blades. Any suggestions to help ease this would be welcome. I take Vicodin now but it is not affecting it and can’t take steroids because I am having the test next Monday to see how high the cortisol is. I had a saliva test and it was pretty high on that so now they are trying this.

I also have elevated blood sugar, lowered thyroid, higher blood pressure and the purple stretch marks on my stomach. My face has officially become “moon” so is this pain from the “hump” forming that I have read about? See how scatterbrained I am-my memory is totally gone-if you tell me something and I have not written it down it is forgotten, which is bad especially for my job.

Thank you in advance for your support and helpful advice.

Bert

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