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Danielle, Undiagnosed (Cyclical Cushing’s)

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May-Aug 2013 Age 17-18

I started noticing that i was losing weight. My arms and legs looked like toothpicks and i had bruises everywhere. i was fairly active i would run and lift weights everyday minus some weekends. Till i couldnt no more. I became very very weak, i was tired and fatigued all the time no matter how much sleep i got. I would wake up 5-8 times a night to pee, i was constantly hungry. Omgsh never not hungry i could eat and eat and eat but i still wasnt big. I was “too skinny”. My hair started to fall out in clumps , i would get these attacks where i would have insane blurry vision, i would become super pale and my stomach would blow up like a balloon. i would have terrible back and stomach pains , ringing in my ears.I would started shaking,my speech would become slurred and all over the place. I would not be able to walk straight or think clearly. I was very scared and i hated everytime these would happen. They usually hit the more active i was. so if i would run or even jog/ walk for more than 15 min it would hit. i became scared of doing anything

More symptoms: Constipation
drooling
Muscles felt like they were eating them selves
terrible headaches
no period
thirsty!!!!!
Constant! urination
muscle twitches
muscle spasms and jerks
waking up every hour
terrible acid reflux! it would wake me up

SEPT 2013
weight 115-120lbs

I started working for my father at his shop in sept 2013.I did not last very long. I got to the point where i was dying. I was sick every week, my periods had stopped , i would spot every day. I couldnt think AT ALL i felt so stupid. Like i was in a haze , i started getting really bad hypoglycemea ,which made things even worse. Despite eating so much food it would not go away.
I should mention my moods, I have always been more aggressive and loud happy go getter, i noticed that i was extremely irritable.. and jumpy all the time. I would cry for no reason and my anxiety was getting worse and my anger was like never before. One day after days and days of struggling to work, i went to the grocery store with my father , and i was not able to push the shopping cart, i almost fainted and had to have him take me to the car. Mind u my whole family knows me as “the strong one” . I was benching 220 lbs at 14, now i couldnt push a shopping cart. He couldnt believe it and i stopped working a week later. I had too many things going on i knew i had to get them sorted before i could go back to work and then go to collage.

I went to the doc who sent me to an Endocrinologist. She tested me,
LOW GH
LOW FSH
LOW THYROID
HIGH URINE OUTPUT
LOW LH

At this point i just wanted to get fixed. She told me i had to gain weight in order for my sex hormones to bump up and maybe id feeel a bit better. So i docs orders and started to eat, when ever i was hungry.. which was alot.
i came back to see her a month later, and i had gained 35 lbs!My skin was not as dry, still bruising,and terrible headaches but i had way more energy. I thought i was getting better. Little did i know my tests did not show that. I had cortisol levels 7x the normal limit, my urine out put was very high. I did a 24 hour urine test an filled 3 jugs. She suggested maybe diabetes insipidus and also.. a brain tumor. I was kinda freaked when i heard the word tumor but i just wanted to feel normal . As long as i could get help i didnt care.

2014
i did another dex which came back positive for cushings, i had to do one more and my tests suddenly dropped again. After a few more dexa tests coming back neg she ended up dismissing me and told me that i do not have cushings.

Note: I Did have a neg Pituitary mri
and adrenal

I was heartbroken . i thought that this was my way out to finally feel normal or at least ok.
She sent me to another endo who refused to see me. So i started seeing a naturopath, i spent 800$ the first day of seeing her and all those natural supps, dieting recommendations she gave me did not do a thing. TMI I also went to get a colonic and colonoscopy around this time because i just could not go . And i was pooping out blood.They said everything was okay and that it may have been hemmeroids.

2015
Specialists:
ENDO
E.N.T
Nephrologist

My family doctor suggested maybe i have fibro.. then celiac.. then hashimotos.. then maybe MS? She finally sent me to ANOTHER Endo after those tests were NEG , who said he could not help me the first day of meeting him. During this time i was devloping social anxiety .It was very hard for me to talk to people which isnt like me at all. Seeing as i was a social butterfly.My face would go beat red after any little stress i had. i hated it! i had been seeing and E.N.T because i was coughing out blood. They told me i had cysts in my nasal passages and it was nothing to worry about. And that i also have damage in my esophagus due to the acid . She prescribed me Tecta.I even saw a nephrologist because i was constantly thirsty and constantly urinating. He was the worst doc i have ever seen. He told me i knew too much and i walked out because he could not help me.My energy levels were erratic. Some days i would have so much energy and clean clean clean want to run and do everythiing! , other days i would get out of bed and crash very quickly.This was becoming a burden.

2016 Aged :21
Still trying to get help
moved
weight: 165 (gained)
Specialists: Sleeping
Neuro

I became very frustrated and sad of always being let down and disapointed by all these doctors. I kind of gave up for a bit.i saw two last specialists which were sleeping specialist and a neurologist . which did nothing but prescribe me sleeping pills for my insomnia.The neuro did tell me that the symptoms i am having were not caused by cushings, so he started me on topiramate. An antiepileptic drug.

I finally contacted a pituitary specialist downtown toronto. And thank the heavens ! i got an answer! CYCLICAL cushings. He told me im 99% to have cushings i just need one more biochemical confirmation. He have me a T3 MRI of my pituitary which show an enlargment right side pituitary. “One more test and we can go in there and operate” i was ecstatic! so happy to have finally found someone who can help me.

i tested and tested but my results came back Neg, or just a little bit higher. a few months later He told me that he will keep testing me but he does not think it is cushings anymore. Another heartbreak 😦

2017
moved again
aged 21
Specialists:ENDO

I now have another dexa test and a 24 hour urine.I need this last one and they will operate . during this i am trying to move out to ANY cheap apartment because my father does not help me at all. He makes me much worse and i have no where to go other than his place. He is a big burden and does not understand what im going through at all, i have had two hospital visits this year due to overdose. This is something that i thought i would never do in my entire life, but it happened. I can not handle living like this especially when i have someone putting me down and denying my disease everyday. I am seeing a therapist now and a psychiatrist but the pills they give me do not help when i cannot live my life or work through any of my problems. I have gone to a shelter but this disease does not make it easy for me to live there.I only have my partner helping me right now . ANY donations would be greatly appreciated. !!!!!!!

this is my go fund me to help me get out of here in the mean time.
Thank you so much for reading my story and anyone,, feel free to email me or ask me questions.
i am i gona keep this updated when i go to docs or get any new info

 

Please email Danielle for the URL to her GoFundMe Page

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Victoria (Victoria), Undiagnosed Bio

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Hi everyone! I would first like to say how happy i am that this website exists it makes me feel so much better that others have gone through what i am currently experiencing and have made amazing recoveries! I am 19 years old and just finished my first year at college. This past semester was one of the hardest times of my life because not only was

I am 19 years old and just finished my first year at college. This past semester was one of the hardest times of my life because not only was i experiencing the internal manifestation of cushings causing extreme fatigue, anxiety, headaches, and muscle pain my appearance seemed to drastically take a turn for the worst bringing my self esteem to an all time low. My physical symptoms include an extreme moon

My physical symptoms include an extreme moon face,striae on breasts and calves, excessive hairiness, buffalo hump, acne, and bacne. I felt disgusting and sick all the time. i isolated myself from everyone because i was so embarrassed and sad because i felt like my femininity had been stripped away from me and i just was not myself. I began cutting to cope with my extreme sadness

i am now home for the summer and last Wednesday went to the doctors to finally get the diagnosis of cushings because i know for a fact that i have it. i first showed him my back and told him about my other symptoms. he then asked me if i was exercising and i said no because i never feel well. he said he thought that

he said he thought that i just needed to lose weight and that would help with my back and other things. he did notthink it was cushings because my buffalo hump was not pronounced enough but thankfully enough he said he would do a urine test just to be sure amongst many other blood tests. Now i am not a very large girl cushings has not manifested itself in me that has really effected my weight but it has effected everything else.

Anyways i am still waiting for the results of my blood work and urine test, i really feel that i will get the diagnosis there is no way that i do not have this. i just want to go back to my old self and enjoy college with my friends.

i am so scared and hope to support others and find support through this amazing site! Thank you 🙂

 

 

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Natalie Stokes, Pituitary Bio

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A SINGLE mother suffering from a debilitating rare disease effecting her whole body has been left “disgusted and appalled” after being judged ‘fit to work’.

Natalie Stokes, of Saint Agnes Close in Studley, suffers from Cushing’s disease, a condition where the body produces excess steroid hormones. She had her disability benefits withdrawn eight weeks ago.

Natalie had her allowance withdrawn after an assessment carried out by the Department for Work and Pensions (DWP) in January deemed her ‘compos mentis’ and fit to work – despite both her GP and consultant brain surgeon providing a sick note.

The 33-year-old was diagnosed with Cushing’s last year after countless trips over eight years to see her GP.

She started claiming employment and support allowance (ESA) last January.

She said her condition, which has deteriorated over the years, is “changeable” and suffers fatigue, nausea, insomnia, irritability, memory loss, poor concentration and as a result depression.

Physically, Natalie is tackling life-limiting side affects which include, extreme weight gain, excess hair growth, a rounded ‘moon face’ due to fat deposits, thin skin, boils and severe pains from movement and incontinence.

She said she was “disgusted and appalled” at her benefits being withdrawn.

“Yes I can raise my hand above my head but I am by no means ‘fit for work'”, she said.

In February, she was instructed to visit Redditch Job Centre for an interview but shortly into the meeting an assistant told her there was no point continuing it as Natalie was too unwell to work.

Following the meeting, on the advice of job centre staff Natalie reapplied for benefits with depression but recently received a letter turning her down.

Natalie, who has a five year old son named Charlie, is currently undergoing treatment and doctors believe she has developed a second pituitary gland tumour at the base of the brain after recently having one removed.

Her father Thomas, has Parkinson’s disease and dementia, and despite Natalie’s condition she tries to help mother, Cathie, care for her dad but admits the pair “help look after each other”.

Prior to her condition she worked all her life.

She said: “I was raised with good work ethics and from two weeks after leaving school held down a full time job and even attended evening college to train and become a counsellor.”

“I have ambition and can’t wait to be well enough to work but the fact is at the moment I am not capable.”

She is now considering talking her case to tribunal.

A Department for Work and Pensions (DWP) spokesman said: “The decision on whether someone is well enough to work is taken following a thorough independent assessment, including all available evidence provided from the claimant’s GP or medical specialist. Anyone who disagrees with the outcome of their assessment can appeal.”

From http://www.eveshamjournal.co.uk/news/regional/15232560.Single_mother_suffering_from_a_debilitating_rare_disease_judged__fit_to_work_/

 

Matt, Undiagnosed Bio

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Hello, my name is Matt. I am extremely desperate for answers as I simply do not want to live anymore in this condition. I have been suffering for years with something that I strongly believe was caused by continued use of inhaled corticosteroids (Azmacort asthma inhaler, and Fluticasone nose spray). I used these inhalers for about twenty years. 2 puffs of Azmacort every morning and every night for over 20 years.

From 1996 to 2007, I began to develop several health problems. These included severe neck pain, eye twitching, tremor, heartburn, aching teeth, vertigo attacks, peeling skin from my lips and inside my cheeks, a lower eyelid “cyst” that I had removed, an episode of thrush, depression, daily headaches, insomnia, and low energy.

In 2007, I took my inhalers and threw them out. I was trying to figure out if the inhalers were contributing to my health problems. Within months of discontinuing the use of the inhalers, a few of my symptoms went away, but most of them got worse and I developed more worsening problems- brain fog, crawling skin, constant eye pressure, a feeling of sand in my eyes under my eyelids, constant crying, strange pulling feelings in my eyes, cheeks forehead and scalp, muscle atrophy in my neck, face, and shoulders, withdrawl/hangover feelings, concentration/memory problems, suicidal tendencies.

I always assumed that the problems were caused by the inhalers and figured they would subside with time, and I still think that they may. I have always been optimistic for some reason that I am getting better, but the symptoms have still not gone away. It has been ten years now since I instantly quit the corticosteroids and like I said earlier, I am getting desperate. I have talked to dozens of doctors over the past ten years, and they ALL dismiss the idea that the inhalers caused my problem.

In fact, since my symptoms are all invisible, my MRIs are unremarkable, and my blood work is always in range, most of my doctors I am pretty sure think that I am crazy. Funny thing about that is that I have no reason to make up symptoms that I am suffering with. I have already distanced myself from all of my family and friends. I do not tell any of them how much I suffer, because it is so humiliating when people say that I am depressed, or need rest, or should cut down on stress.

In other words, nobody believes that I am truly sick. I am sure that if I killed myself tomorrow because of the pain, people would say that I was a lost soul, or lonely. I have trouble being around other people because I always feel like I need to cry and decompress. I had to resign from my teaching position because of my insomnia and lack of ability to concentrate. It was the one last thing that I loved. I tried to hang on as long as I could, but I felt that the pressure to be at work and perform well daily was not benefiting my health and probably harming it.

Anyway, here is where I stand right now–


I do seen an endocronologist. I found out years ago that my cortisol levels and most other hormones other than my testosterone are normal (my testosterone level was at 100 for God knows how long). I was shocked when I found that out. I was sure that my cortisol would be through the roof, but here is the thing– I NEVER had any blood tests done while I was taking the corticosteroids. Only years after discontinuing them.

In my opinion, my cortisol levels were elevated (or depressed) while I was on the steroids. I believe that the inhalers poisoned my body. 99% of my symptoms are in and around my mouth, neck, throat, head and eyes (right where the spray was going). I believe that my cortisol levels are normal now because I am no longer taking the inhalers and my body is making the correct amount. What happens, however, to all of the cortisol that was building up in my body if this was indeed happening?

I believe that my symptoms post-inhaler are due to my body trying to get back to normal. But ten years is a long time. I was sure that I would be better by now but I really dont know how long it takes to recover from what I did to my body with those corticosteroids. After all, I used Azmacort shortly after its inception and beyond the time that it was discontinued in the US, when I was ordering it online from the UK. There probably are not many if any people that used that inhaler as diligently and for as long as I did. I have always been thin my whole life, so I cannot say that I ever had a ton of fat on my body that would indicate Cushing’s.

In the past several years though, I have noticed that I am losing mass in my neck, face, and shoulders. My face is becoming more angular. The spot between my shoulders where a camels hump would be is becoming more and more concave. It seems like this is kind of the opposite or reverse of Cushing’s. Could this be because my body is trying to recover and slowly melting away the fat deposits on my face and neck?

Again, I am extremely desperate for answers and help. I look forward to being a part of this forum and eager to find out if anybody else out there has had a similar experience to what I have been going through. I have researched Cushing’s and other diseases for years. One thing I have never been able to find online is how long does it take to recover from Cushing’s. If I did, indeed, have Cushing’s, it would have been building up for nearly 20 years. What kind of recovery would be involved with unknowingly having Cushing’s for that long? I really need to find out if it is possible that I could still be recovering after 10 years off of the corticosteroids. I still have some faith, but that faith is definitely waning.

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April (April), undiagnosed bio (PCOS)

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Originally posted December 28, 2008

 

My name is April…I am 34 years old and recently started having some issues that led my family Dr. to do some bloodwork. My cortisol levels came back very “very high” according to him, with regular female hormones “slightly out of whack.”

I am so condufused at have no idea where to turn. I found this board and in reading the bio’s it was like reading “my story”. I have felt like I am going crazy and no one understands…including my unsupportive husband.

My history…
2 children…premature (they re 15 & 16 now)
2 miscarriages in past 5 years
hemmoraghed 3 times, hospitalized -D&C
Heavy abnormal periods w/severe back pain
Diagnosed with PCOS 2 years ago after trip to emergency room with what i thought was appendicitis
anemia
Underwieght (5’2…100 lbs) but have “spare tire” around mid section
Have very large Lipoma on shoulder blade near neck
Adult onset acne and boils
RLS
Severe shoulder neck pain
Went to family Dr. recently because I had a 9 day crying jag over something trivial, to the point i couldn’t work!
Dr. prescribed Zoloft and Xanax,for depression,which stopped the crying, but i feel like i may be abusing the xanax.
I feel sad and alone. I just want to stay in my house and hide!
I also have always had anxiety.
My blood pressure has always been low, but Doc has always said that’s normal for person my size.
No sex drive.
Don’t like people touching me.
I smoke, like a frieght train.
I CANNOT SLEEP more than three hours! I can take 15 mg of melatonin and 2 mg xanax and still be up after 3 hours sleep.
I only urinate about 3 times a day which is dark and cloudy and funny smelling. (sorry if TMI)
I am always thirsty!
i could go on and on…

I just want to know if I am crazy or if something is really wrong with me. this is affecting my realtinship with my husband and friends.

my insurance company shanges after January 1st , so i will be making an appt with the surgeon to have the lipoma removed.

Should I see an endocronolgist?
when i talked to my Dr. about my bloodwork, I was so overwhelmed, i didn’t ask any of the right questions.
all I remember him saying is that a norml cortisol range would be 200-300, high 500-600, mine 823.

Does this make sense to anyone?
Thanks for listening!

Any advice would be a god send…
April

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Julie B, Adrenal Bio

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adrenal-medulla
Hello, 47 year old female with two adrenal adenomas. Gaining weight like crazy, feeling tired, can not sleep, pitting edema in legs, bruise easily, pain in side, back, joints….and many other things.
Frustrated….had two 1mg dex suppression test that both came back high levels of cortisol. Had two 24 hour urinary cortisol that came back fine. Now on my 3rd doctor as I keep getting refered out.

Having a 2 mg dex suppression test Monday along with saliva test which I have now read that with adrenal adenoma saliva test may come back negative.

Everything in my life is changing and I am tired of feeling bad along with how long the process is to get a diagnosis.

Any support and information would be greatly appreciated.

 

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Candy (Candybar11), Pituitary Bio

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pituitary-surgery

 

I was diagnosed with Cushing’s in 1997.

I had never heard of it before my doctor said he thought I might have Cushing’s. I went right to the library and read about the disease, they literally could have used a picture of me to display the physical characteristics.

After some testing I went to the NIH to verify I had a pituitary tumor. After it was confirmed I was scheduled for surgery. My surgery was successful to a point. They said a small part of my tumor could not be removed. My recovery went fairly well!

I began to lose weight and a lot of my symptoms went away. However it has been a long road. I still have some symptoms that never went away, I still sweat a lot, body aches and pains (now I have RA, fibromyalgia) memory not great, never lost all my weight either. My labs all say most of the time I am in normal range but I do not feel cured! But new doctor says numbers are fine you are fine.

I have been disabled since 1993, I had a lot of health issues that later were all related to Cushing’s. This disease in my opinion is never cured!

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