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Roxanna (Dawn), Undiagnosed Bio

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I’m writing because im frustrated and sad. Today I got my results and doctor says negative for Cushings .
CORTISOL, FREE 24 HOUR.
F CORTISOL, FREE, URINE 36.2 Range 4.0 to 50.0

I have another appointment with an assistant to an Endocronologist but that’s not until next month March. I’m tiered of waiting.

I’m fatigued all the time. Insomnia. Emotional and currently tapering off venlafaxine. Lots of hair for a female. Camel hump.

Large abdomen. Low thyroid and high testosterone. Purple stretch marks. Edema in ankles and legs. Extreme joint paint and vitamin D deficiency. My teeth are decaying. I gained 50-60 pounds in 1.5years. Memory issues. Prediabetic and some hypoglycemia. Blurry vision sometimes.

I was hoping finally I would get treatment. I want to get an answer and help. I want to live again. I want to one day have anther child. I just know that I cannot plan on moving forward with life without taking care of this. I feel like I’m just in a hole.

I’m 31 years old.

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Lin N (Lin), Undiagnosed Bio

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HI there!

My name is Lin, I believe I may have Cushing’s based on what I have read. I was a normal person going about a normal life when I had surgery in 9/12. Immediately following the surgery, I gained 110 pounds in a year. I went through three physicians and no one could explain why I would gain weight like that.

The last doc in 2014 did do 24hr saliva tests. He told me then that my Cortisol was high but I never saw the test and honestly did not know what Cortisol was or what that meant. In hindsight, neither did he because no follow up tests were done nor was I sent to an Endocrinologist.

Between Feb 17 and Nov 17 my entire body changed. I had been very fit in the past and had a lot of muscle. My body now is nothing but cellulite. My hands and feet once slender now resemble Vienna sausages, my face is as round as a cantelope and the fatigue, depression, anxiety and feeling of unwellness was just to bad to ignore.

New doc in 2018 was first to take me seriously, I had read a few sites and knew to go in armed with a journal and pictures. He agreed that I may have Cushings and referred me to an Endocrinologist. Again my midnight saliva Cortisol twice high normal. So here I am, looking for answers, looking for someone more experienced than me. Come to me Yoda and help me find the answers I seek.

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Cyndi K (What Now?) Undiagnosed Bio

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So – 55 years of age and it has taken me ….4 years to actually get to this point, but I suspect if diagnoses is confirmed that its been more like 10 years since the first symptom.

I am tired, kind of freaked out right now and alone. I do not have monetary resources and looks like my job is about to bust – so there goes insurance.

I am scared, lonely, and in pain. I have had emotional loss after emotional loss for the last 8 years and feel so stressed out at this point I am having “Hypertension Episodes” every other day for the last week. I ache.

I do not know how to eat this elephant – okay so I know that I have to write this journey but I will have to come back to this.

MaryO’Note:  Cyndi says also “In the process of discovery – all symptoms check marked. CT Scan completed 2 days ago – waiting with anxiety for results of blood work and scans.”

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Mika, Undiagnosed Bio

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I’m 16, going on 17… and I think I’m close to being diagnosed with Cushings. Quite frankly its scaring me so I’ll just do my best to get my story out there.

I’ve always kind of been on the heavier side compared to other people my age, even when I was really little. However, my weight has shot up from 60 kg to about 110 kg in 2-4 years, and my already awful confidence is basically shattered.

When I got my growth spurt I got severe stretch marks, but I thought it was nothing, and my parents attributed it to me growing so quickly or something along those lines.

I’m in constant pain, I’ve barely been to school since September 2016. I can barely move half the time due to severe exhaustion and pain, I fear for my future.

We originally thought all the pain was from gluten intolerance, which I was diagnosed with, late 2015. We completely cut gluten out of my diet, but instead of getting better, my symptoms got worse. The exhaustion lead to a diagnosis of chronic fatigue in mid 2016.

On a whim I’m guessing, my doctor ordered tests for ACTH when he got told of my worsening symptoms. It was much higher than it should’ve been, and I got forwarded to an endocrinologist, more tests, ect… I need to go back in a few days for the results, I’m becoming more and more nervous the more I wait.

My already bad mental health has taken a hit, as well. I was never really mentally okay due to a horrible string of things happening to me in my childhood, but when this popped up my illnesses got 10x worse, to the point I’ve harmed myself and attempted suicide. Even when I feel okay enough physically, I can’t go outside without being scared something will happen to me or that everyone is judging me for how I look. I was on medication for depression, but I was able to function even less when I was on it, so I was taken off of it. I have depression, anxiety, PTSD, and other disorders which have been diagnosed and they’ve all worsened in some way.

My schooling has taken an even bigger hit, I can’t think right due to disturbed sleep, general tiredness and headaches. I used to be a fairly good student and before I left, my grades had dropped significantly, my teachers and peers were looking down on me for how far I had fallen.

I used to constantly blame myself for my weight, I’ve hated it since I was very little, so at least this gives me a small bit of relief that its not completely my fault.

I just want to get my life back, I have my whole life ahead of me, but my teenage years are basically being stolen from me like I had my childhood stolen. While everyone else my age worries about tests I worry on if I can ever move out of my house or even walk to the shops again. It feels wrong and cruel. My symptoms have suddenly gotten much worse and I’ve developed new ones, and I honestly get more scared by the day.

Everyone else’s posts give me a tiny bit of hope for the future, I just hope I can one day live like everyone else does and not be weighed down completely by illnesses. It will be a slow road, but I just hope I can get there in the end.

Thank you for reading this to the end if you have, sorry if its just a jumble of words. ^^;

 

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Courtnay P (Courtnay), Undiagnosed Bio

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Hi

I think I have Cushing disease

Caused by a pituitary tumor

Though i’vs asked,

My doctors have not yet given me an MRI

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Suzanne (Suzanna), Undiagnosed Bio

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Hi all,
Looking for some knowledge as I feel like my GP had been really unhelpful over this.

So I went to see him for some infected bites a few weeks ago. It’s really difficult to get an appointment with him so while I was there I figured I would mention my water retention. I’ve suffered with this on and off all my life (I’m 35) but lately it’s been a lot worse. I suspect my contraceptive pill, it’s called Yasmin (Yaz) and I’ve only been taking this particular one for about 18 months.

He sent me for a full blood MOT (vintamns, full blood count, liver function, thyroid, iron, etc etc, there were about 10 altogether).
The results of these came back and all were fine except the Cortisol level. I knew what this was because I’m a dog trainer/behaviourist and in dogs, Cortisol is referred to as the stress hormone. GP said a normal morning level was between about 166-507….mine came back as 1023!

He ordered a repeat Cortisol blood test and a 24 hour urine test. I’m still waiting on the results of the urine test but the second bloods came back yesterday at a level of 798. Obviously still very high, although lower than the first time. He says it’s likely I have Cushings. Cue massive panic as Cushings is very common in dogd and I have cared for a lot with it and it really isn’t very pleasant in dogs 😦

GP says it’s caused by a tumour and I will have to have medication and/or an MRI scan and possibly brain surgery. I seriously do not fancy this when my only complaint is water retention!!

I do have quite a busy life, I work as a dog trainer and also run around after a five year old. I’m a naturally stressy person too, and worry excessively about things that don’t really need to be worried about.

My GP, when asked whether this could be caused by my pill, said no. But the other symptoms I get with this pill are occasional heart palpitations, mood swings, a feeling of buzzing sometimes, like adrenaline is coursing through me (I’ve always thought it was the estrogen?!) and increased appetite for sweet things and wanting to eat junk all the time.

My Herbalist is almost certain this pill is causing my hormone problems and is responsible for the high Cortisol levels. So I’ve decided to stop taking it for a couple of months and ask for a repeat test and see if it has made any difference. My Herbalist has also recommended Hemaplex and something called Ashwanganda.

My GP’s current plan of action is ‘wait for the 24 hour urine test results and then refer to one hormone specialist or another’.
Does anyone have a similar experience that could help me? Many thanks in advance 🙂

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Nicole, Undiagnosed Bio

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My name is Nicole, currently 19 years old. I’m a student at The Juilliard School in New York studying Dance. I don’t know why it’s taken me so long to reach out to this community, I have certainly been stalking and researching this disease for months now… I guess I’m ready now to share my own story, especially since I feel more hopeless and alone than ever before.

July 2015— It all started about two years ago. I was only 17 and very much in peak-performance shape. I looked and felt like an athlete training to be a professional ballet dancer. I prided myself for my toned body, which is very very important in the dance world. I think I weighed about 103 lbs at a height of 5’4″.

But that summer I noticed it became increasingly difficult for me to fall sleep at night. I would sometimes stay up until 3 or 4 AM when I knew I had to be up at 6 or 7 AM for a full 8 hour day of dancing. I started to stress eat a lot as well and by the end of summer I blamed myself when I had gained back all the weight I had worked to lose the previous year, plus some. I think I was about 114 lbs by the end of August.

Around this time I also sought out a Naturopathic doctor for the first time at the suggestion from a friend to help me treat an underlying anxiety disorder. I was given supplements, and for a while my health improved considerably. I felt more calm and sane than ever before in my entire life. But that didn’t last long. I continued to steadily gain weight during my senior year, always going on extreme fad diets to try to maintain. Sometimes it worked, sometimes not.

March 2016– By the time Spring rolled around I was really starting to notice a difference in my appearance. My face had begun to swell and I began to wonder if maybe my weight was out of my control. Maybe there was an explanation for my struggles and failed efforts. So I began researching hypothyroidism, since it runs in my family, and I went to my primary care doctor to ask for the first tests. Little did I know this would be the beginning of a long and defeating marathon.

My doctor initially treated me like I was crazy. Saying that if anything I was still underweight and that I should be concerned about my primary amenorrhea (I had still never had a period). But he did the tests and the results came back suggesting hyperthyroidism. I was confused because all my symptoms suggested otherwise. Nevertheless I was shipped off to an endocrinologist who was of little help to me throughout the summer while I continued to dance and went away for a summer intensive in Chicago.

June 2016– While in Chicago my weight just ballooned even more. I admit I did gain muscle but that was thanks to the rigorous amount of training I was doing at the time. I definitely didn’t look right though. My muscles were buried under a layer of fat, no tone was visible, and my puffy face made me look like a stranger to friends when I returned home. I tried various thyroid replacement hormones at low doses, desperate to get my body back.

August 2016– I had returned to my Naturopath in the hopes she could finally diagnose me with hypothyroidism. She did, and in fact she discovered I have Hashimoto’s, which explained the fluctuating levels. She put me on NaturThroid before saying goodbye as I departed for my Freshman year of college at The Juilliard School.

September 2016– My health improved a short while. I lost some of the puffiness on my face, dropped some weight, but settled around 117 lbs. This only lasted about a month.

October 2016– By October things turned for the worst. I felt only weaker the more I pushed myself each day. My muscles weren’t allowing me to dance at the same capacity as I once had, I was embarrassed by my short comings, especially being surrounded by so many talented individuals. My weight started rapidly increasing now. I regained the puffiness around my face and neck, and my weight went from 117 to 126 in a matter of a month.

I was referred to a Reproductive Endocrinologist who thought I had PCOS and put me on metformin. To her credit, I did fit the profile. I complained of rapid weight gain, I had slightly elevated testosterone, and I had a few small cysts on my ovaries. But there were also things that didn’t fit the bill. Like my apparent lack of Estrogen, which is usually elevated in PCOS. And that I had never had a period before. I also showed no signs of pre-diabetes.

January 2017– After winter break I really could no longer put a stop to my weight gain. No matter what, it just went up. I tried cutting carbs, sugar, and calories to below 1,200 a day, all while dancing 6-8 hours a day and my weight only went up.
Metformin didn’t work. Repro. Endo. put me on estrogen and progesterone for a while, but I stopped seeing her eventually because she didn’t listen to me and ignored my qualms about weight.

I also grew very very depressed around this time and began to wonder if this was the end of my dance career. I was starting to look like a joke in classes. I mourned my body. I didn’t recognize myself in the mirror.

May 2017– After months of research I began to wonder if I might have Cushing’s disease. I had the stretch marks on my butt and thighs, the filling in of fat around the collar bone, neck and jawline. Rapid weight gain, fatigue, depression, angry outbursts, and flushed cheeks. I do not have central obesity, but my weight has always tended to go to my butt and thighs. Though for the first time ever I begin to form a muffin top and fat on my arms. Cellulite appeared everywhere when I stretched my skin even a little bit, very odd to see cellulite on your knees! I had swollen legs too.
I now weighed 135+ lbs.

June 2017– When I got home for summer break my mom and I saw Neuro Endocrinologist Dr. Kevin Yuen at Swedish Pituitary Center. He listens to me, the first doctor to really listen! And he began testing.
Four 24/hr urine, 4 midnight salivary cortisol, 1 dexamethasone suppression test, 1 dex-CRH test, 1 Pituitary MRI.

July 2017– (current weight = 147 lbs) After a visit with Dr. Yuen and weeks of speculation he concludes there is only a 50/50 chance I have Cushing’s. Test results are as follows:
-2 mildly elevated 24/hr urines
-2 normal 24/hr urines
-3 elevated midnight salivary cortisols
-1 completely normal midnight salivary cortisol
-normal response (suppressed) after low dose dexamethasone
-normal response to Dex-CRH
-normal MRI

I’m disappointed to say the least that there is not more resounding evidence that I have this disease. I feel so certain that I have it. My body and mind are changing so rapidly I just want to cry every day. It’s so bad I don’t think I can return to school in the fall. I may have to take a year off of dance if I don’t get my body back in shape by the fall. And a year off of training could ruin me!!

Dr. Yuen suggests doing a hospital stay at Swedish to conduct further testing, particularly midnight serum cortisol, to see if more positive results might outweigh the normal results. I guess he wonders if I did something to mess up the cortisol response in some of the tests, though I don’t see how I could have! I’ve barely done anything this summer, definitely nothing exciting. I’m home-bound because I feel so depressed.

I don’t go to ballet classes anymore because it’s too painful to see myself in the mirror and try to dance in a fat suit. None of my clothes fit anymore. I just don’t feel like a young attractive woman like I used to. Not to mention my energy is out the window.

I haven’t quite given up yet! I eat a very limited paleo diet that omits grains and sugar (except those naturally occurring). I try to swim at least every other day and keep up with my pilates and stretching. It’s not the same though.

I might give up if after the hospital stay, the tests come back normal and I’m told I do not have Cushing’s, when I don’t see how it could be anything else!

I just want my life back.

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