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Paul M (Paul), Pituitary Bio

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Hi All,
I was diagnosed 4 years ago. I had extreme weight gain despite a very physically active life style. I would require less than 2 hours a night of sleep. Eat less than 1,000 calories per day and exercise 3-5 hours a day. I had the emotional swings as well. I would bruise or cut very easily. Doctor suspected Cushings after I displaced my knee cap for the second time due to Patella Tendonitis.

Months of testing resulted in what the doctors considered a low likelihood for positive outcome, the surgeon (supposed to be one of the best) agreed to remove the tumor either way. It was filling the Sella to the point it was pushing on my pituitary. It was wrapped around my optical nerve and would probably cause problems with my eyesight.

I was told that I would be back to work in 3 weeks.

Post Surgery my Cortisol levels never rebounded. The doc gave me 10mg of cortisol with no affect. Then they gave me 40mg and I could get up to go to the bathroom. Within an hour levels were back down to 3 (whatever).

They put me on 80/40mg of Cortisol for morning and noon each day. I still was basically unable to move. After 1 year. I was off cortisol and passed the suppression test. And still wasn’t losing weight, felt sick all the time.

It appears my anterior pituitary gland has not recovered. I don’t make enough TSH or the hormone to induce Testosterone. I took the Gel for testosterone with poor results. My thyroid tests are considered inconclusive. I try to feel out my thyroid dosage. Now I get testosterone implants. They seem better.

Basically put, four years later I feel almost as bad most days as before the surgery. Weight gain is still an issue. The major differences are, I sleep really well. I don’t bleed at the touch. My feet are very week, I could sleep 15 hours a day.

 

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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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Mae, Undiagnosed Bio

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golden-oldie

 

Originally posted Sunday, October 26, 2008

I am now 34 years old and have recently moved to a new state. I really don’t know when I started to show the signs. I have had migraines since I was in junior high. I used to have dark stretch marks and major mood swings in high school. My periods were so very painful and heavy I would bleed through a sanitary napkin every hour and a half. Once I graduated I went to the health department and asked to be placed on BC pills. I was eighteen, planning on having sex, and wanting to be safe about it. Within the next three months I put on about 60 pounds.

When I first moved to Virginia I was weighing about 135 pounds on a 5’6″ frame ever so happy in a size 8. By the following January I was almost 200 pounds and in a size 20. I went from wearing form fitting clothes to wearing sweat pants and t-shirts as large as I could find them. When I asked the health department about this, I was told that you have to expect to gain weight when you first start on the birth control pills. I was an active 18 year old, I didn’t over eat, and I was a personal nanny to a very active child. I took her on walks daily for at least an hour.

Things happen, as they always do. My fiance and I broke up, I moved to another part of the state, and pretty much ate only enough to make sure I was getting some nutrients into me. Depression set in, and my whole being seemed to change. I went from being an outgoing, happy center of attention to an brooding and depressed loner. I didn’t even want to be around my family (whom I lived with at the time). I went to the doctor again. I wasn’t planning on doing anything, so I stopped taking the birth control. When I asked the doctor about the weight loss, I was told it would fade within time as long as I worked at it.

Two years go by and I worked at it, and 20 pounds went on their way. The depression was starting to ease, I felt some of my old self returning. I decided to move it along and branch back out on my own again. I vowed to take back two years of my life. I was out going again, I WAS ME! I was eating healthy, only getting fast food at the most, once a week. Eating more salads than anything, and county line danceing three to four hours (non-stop) about four times a week (one day a week was for a demonstration team). I wasn’t loosing any weight. As a matter of fact, I had started to slowly gain it again. I also had my first bout with kidney stones. I met my soon to be husband almost two years to the day of vowing to get back my lost years.

Since My husband I have married (9.5 years now), my weight has been a large roller coaster ride. I have never been back down to the 180 I was when we first met. I haven’t been below 200 since then. I have maxed out at 260 so far. Each time I feel almost like my old self, I pick up the hard dieting and working out 4-5 days a week. I love weight training. Not the body building kind, but the lean muscle building kind. I will start out loosing weight and I will keep it up. I will loose about 10 pounds before the gain starts. Then I will tell myself that the gain is muscle and it is to be expected. 20 pounds later, when I am 10 pounds more than when I started, the depression starts to set in. I keep working at it with tears in my eyes and I no longer enjoy it. Finally, when the next 5 pounds hit, I just give up. All of this takes place over about a 4 month period. The only time there was a repreve was when I was pregnant with my daughter. I went back to feeling like myself again when I was pregnant. I also lost 25 pounds while I was pregnant. I was pregnant for 6 months (she was 12 weeks early due to pre-eclampsia).

Kidney stones started happening more frequently. UTI’s (which I had never had before being pregnant) started happening about every 6 months. I had been diagnosed with endometreosis, and the ovarian cycst I had been diagnosed with at 17 had come back. I was diagnosed with depression, and was always being told by the doctor that I needed to loose weight. No matter now many times I told him that I tried only to gain it, it was like he never heard me.

My break through came about a year and a half ago. I was reading one of my mother’s Reader’s Digest’s she had left at my house. I was shocked. It was almost like reading my own story. That night I hopped on line and came to this website. There was a diagram hand drawn of what a body could look like with Cushings. While I was reading the symptoms, my husband walked in. He asked when I had posed for the drawing. I broke down in tears. My wonderful husband came over and held me while I cried it out. Then listened as I explained it to him. I still didn’t have the courage to ask my doctor about it.

The following month, the recurring UTI’s started. I was getting one every two -three weeks. Then my mind started to go. Like one of the bio’s I have read here, it felt like there was an alien in my head. I could see myself acting in ways that weren’t me. I couldn’t even interact with my daughter without having flashes of anger. The depression medication pretty much stopped working, and there were times I couldn’t even stand myself. I finally found the courage.

I made an appointment to see my PCP. Since there was nothing ‘wrong’, the earliest they could see me was a month away, I agreed. I nearly called back to cancel the appointment at least three times. I kept it. He wasn’t very supportive. I was overweight and fat people like us have to find a way to loose it was pretty much what he said. But he would order and 24 hour UFC test. and we would go from there. Guess what? It was high. He refered me to an Endo. Wonderful Endo. I hated leaving him.

I went to see Dr. Barnes and he listened to me. I took pictures of me for every year since I was 18(which took a while to gather since I haven’t really had any pictures taken of me for the last 8 years). He asked me questions. He listened to me. He made me feel as if what I had to say was important and needed to be heard. Then we did the exam. He talked, measured, asked, and explained the whole time. He looked at the hair loss, the hair that was growing where it shouldn’t, even the stretch marks that have long since faded to white (but once in a while flair red). He ordered a dexa test. Then he put me on blood pressure medication (my blood pressure had been creeping up for about a year), started me on Fortamet to help ease some of the symptoms, and ordered me back in two weeks. The test came back only slightly elevated. Enough to be over the norm, but not eoungh to confirm a diagnosis. He ordered a midnight cortisol test (it was now about almost 2 months since I first saw him). The results were on the high side of normal. He wanted to keep an eye on me. He couldn’t diagnose me, but he felt that my concern was warrented. He wanted to keep on eye on me. I was to see him every three months. If my symptoms were to come back, then I was to call him immidiately.

Four months ago I had to say good-bye to Dr. Barnes. I moved with my husband when he retired from the military. I am now back to the drawing board. I have a wonderful PCP now (which I didn’t before). She listened to me and refered me to an Endo. I left the new Endo’s office very exasperated. She walked into the appointment and didn’t even shake my hand. Strike one. Next came the physical exam. She felt my thyriod, one point in her favor. That was all she checked, strike two. Then, right there told me that I was diabetic (go figure that the last blood test I got said my sugar levels were excellent) and I had PCOS. The woman had only known me for ten minutes, if that, and was diagnosing me without seeing blookwork results or anything else. Third and final strike. I am still so put off by this experience, I haven’t gotten the nerve to go back to my PCP and ask for another referal. The Endo did do a dexa test, and said that according to that test, there was no way that I could have Cushing’s and that was the end of it.

Since then, I have had my gall bladder removed after having a gall stone pains for the last 4 years that no one could find. I also have two new kidney stones. One of them about a half an inch in diameter (again). The fatigue has returned. Insomnia is hitting again. Depression is setting in. My temper is starting to flare for the slightest wrong. My concentration is failing. When I changed the chanel and found the Mystery Diagnosis on about Cushing’s, I felt that was God’s way of pushing me. So, when the week starts, I will be calling my PCP and see if there is another Endo she can refer me to. As the song goes, ‘Here I go again on my own”.

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Amee (Amee), Adrenal / Pituitary Bio

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adrenal_glands
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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In Memory: Barbara “Cookie” Rothenberg, Oct 11, 2003

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Saturday, Oct 11, 2003

The One and Only Cookie, photo taken by Erin
Columbus CUSH meeting, Saturday, October 26, 2002

From the posts on the message boards:

My heartfelt prayers and sympathy goes out to Cookie’s family, I never really had gotten to know Cookie Like many of you, but during a few chats, I saw how she helped many, answering questions, ect… and always willing to help out. My heart is sad to hear of her passing.


What I learned from Cookie was that she loved people and wanted to make a difference in the lives of those who suffer from Cushing’s. She touched many hearts, I know she touched mine….


Cookie was an inspiration to many of us. She gave her all for Cushing’s awareness, and I will always remember that the last time I saw her, she was singing…
Shalom, my friend.


Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.

We’ll miss you so much, Sweetie.


I was lucky to have gotten to meet Cookie. She is such a fun person and she could always cheer you up.


Cookie, gees, what can you say. She was dynamic, committed, determined, exasperating, poetic, driven, electric, comedic, funny, supportive, strong, loving, loved, and not to repeat, but a driving force in creating CUSH and helping those who needed it. She was wonderful with fundraising. She was involved in so many activies that were for the benefit of others. She has dealt with many challenges in her life and continued to passed the point that many could not.

She will be sorely missed by all who knew and knew of her.


She was just an incredible, delightful person. I really think this world is a little dimmer today without her light from within. I know a lot of us are missing her already. I remember talking to her about the upcoming conference and her enthuisiasm was contagious. I’m just so very, very sorry to hear she’s passed. I hope her next life is one without pain, where she can sing and write poems to her heart’s content. Cooke will be sorely missed.


My family and I met Cookie at the UVA Cushings Conference Fall 2002. She was so helpful and caring. She told my father, sister, and I her “Cushings Story.” She was so, well, there is no better word to describe her, “bubbly.” She was so happy to be there, teaching, learning, and helping with CUSH. She left an impression on my family and I. She had such a great personality. She was one of the very first “Cushies” I met…and she made me re-think my attitude about being sick. She was going through so much, yet she had such a wonderful attitude towards it all. She was amazing!


Cookie touched a lot of lives. I remember back on the “old board”–before any of us had met any of the others in real life–I would get these perky, cheerful and witty emails from Cookie. She had a signature that was some kind of rhyme including “Lookie, lookie,…Cookie.” Her little dollop of cheer in my “inbox” always made me smile.

It is terrible to lose her. She has left such a legacy, though, that she will go on touching lives for many years to come.


I think this fits Cookie perfectly:

Some People …
Some people come into our lives and quickly go
Some people move our souls to dance
They awaken us to new understanding
With the passing whisper of their wisdom
Some people make the sky more beautiful
To gaze upon
They stay in our lives for a while
Leave footprints in our hearts …
And we are never the same

— Anonymous

~~~

Cookie shared this poem  to show how she felt…

It was an awful state that I was in
Hair was growing on my chin
My moods were swinging from low to high
All I did was cry “let me die!”

The hair kept growing down my neck, chest and bod
Would some dr not think this was a little odd
Sometimes I was up day after day
Then I’d want to sleep all the time to chase my troubles away

Rather I’d eat nothing, something, or very little at all
It seemed getting fatter and fatter was my call
I had every symptom of menopause
Too young they said, it’s in your head, there is no cause

I sing so when I said “I have another octave that is below”
They said pack your bags, to the loony bin you go
My periods were off the dr’s. were lazy
After running tests they said I was crazy

Nine years passed, symptoms got worse and I got fatter
My arms and legs were thin, please help me, what’s the matter
I was beginning to think maybe they are right
Maybe I am just a wee bit up tight

But my husband would say find another dr. it has to be
You are not the girl who married me.
Our children were afraid to them I was so mean
I’d see myself doing and yelling and to myself I would scream
“What is wrong with you! stop it” as if I was in a bad dream

Then I went to a dermatologist for a rash I had
He took a look and and asked “What else to you is bad”
I poured out my heart, I cried and I said
I can’t take any more, I wish I was dead

He asked who I had seen and I gave him the list
And I could see on his face, he really was pissed
He got me to the Cleveland Clinic and the best dr. there
Who listened to me, and checked out the arms, legs and hair

The mood swings, personality changes, the ups and the downs
Voice lower and periods, and face and body so round
One thing he did was run the same tests
Over and over as the results were not the best

Nothing was the same result and so he knew
Surgery was what they had to do
Something is very wrong in my body he said
Let us take a look now or you will be dead

We think you have Cushing’s Syndrome or Nelson’s Syndrome, too
But we will do our best to help you
Let us open you up and we will explore
Then we will know rather we do less or more

As it turned out the x-rays did not know
What they would see and how much would have to go
My female organs had tumors, fibroids and all
They called this syndrome Stein-Leventhal

A complete hysterectomy is what was done
How I had children not one of them knew, not one
Upon seeing that problem to the adrenals they flew
And things were so bad they removed two

The adrenals, 13 times their normal size and had twisted so
On the x-ray they looked fine, but they both had to go
After that they knew and to me they said
There is a pituitary tumor in your head

But until it grows there is nothing we will do
And 15 years later is when it grew
By then CAT scans and MRI’s were everywhere
So even I could see the tumor there

And no more cutting open the persons head
Up the nose they went instead
Well here we go again, lucky me
The tumor was wrapped around an artery

We can’t take it all out but we will do our best and try
If we sever the artery, you will die
5 years later I was back and then
They took the tumor out again

I opted for radiation to kill my friend in my head
I got tired of the Cleveland Clinic saving me a bed
I had other surgeries and emotional problems but day by day
I was going back to the female way

You see I was very slowly turning into a male but how
Will I be come a women now
The next 8 years were very bad
Almost worse than the first 9 years had

I lost some weight, most of the hair went away
With Nelson’s Syndrome some of the Cushing would stay
I woke up one day and the sun was shining
I was no longer bitching, no longer crying

I was almost me except for the pounds
And the thin arms and legs and the body so round
I was accepting me my life was changing
All I needed was a little more rearranging

I was out in public, I was acting and singing again
Working, volunteering, how did this happen, when!
I still get little bouts of depression but then
I know why, I’m not scared, I feel them coming and when

So hang in there and I promise you
You’ll be doing the things you used to do
Maybe a little slower, maybe not as long
Things will brighten up, I know I am not wrong

Keep on looking the right doctor is there
I know what you are going through, I really do care
I am here for anyone to help with what I can do
We all are rooting and praying for you.

 

1955 and 1962 [Photographer: Cookie’s family]

1980-81, 3 years old, 2000 [Photographer: Cookie’s family]

2000 and 1998 [Photographer: Cookie’s family]

 

From the message boards thread about Cookie:

When Sue left a message on my answering machine this afternoon (October 11, 2003), I knew that something was terribly wrong. It never occurred to me that it could Cookie, our Cookie. Always so positive, cheery, full of life. Even though she was as sick as she was, again, I really thought that she’d pull through, one more time. How could she not? She’d survived pituitary surgeries way back, adrenal surgery, Nelson’s, Cushing’s, more than any one person should have to endure.

Throughout her too-short life, she’s been far too sick, yet she’s carried it all off with grace and enthusiasm.

First diagnosed with PCOS, Cookie had an hysterectomy years ago. During the hysterectomy, they realized that her adrenal glands were greatly enlarged. Cookie had Cushing’s disease and in 1974, Cookie had her adrenal glands removed, in 1989 she had her first pituitary surgery and in 1994 her pituitary was removed completely. Then radiation. Since these are the major glands that run the body, she has been on major hormone replacement for a long, long time, pills and daily injections. Because she had both adrenals and pituitary gland removed, she was also saddled with Nelson’s syndrome…and more medications. Because of her Cushing’s experiences, she helped to found the international CUSH organization to promote awareness of Cushing’s disease/syndrome and served as it’s treasurer and fundraiser.

In November, 2002 she had surgery for E.Coli in her sinuses, of all places (she told the doctor that she wasn’t snorting hamburg!) and in December she had a pacemaker put in.

In Feb, 2003 Cookie suffered a Code Blue. Her heart stopped and she stopped breathing. There were 15 people working on her to bring her back. She couldn’t feel her feet, then her hands were cold, then every little thing imaginable was happening with her. Then cardiac care, a heart attack. Cookie went on permanent dialysis. Her hands suffered permanent damage, Raynaud’s Disease. Her fingers turned purple and she had to wear white gloves all the time. She was bleeding internally again and her platelets were down.

I talked to Cookie after this last assault on her body and she was as cheery as ever. She wasn’t really ready to go home, but she walked 60 feet at the nursing home in several tries and if she could walk a total of 60 feet then her insurance would pay any longer. Her dialysis times were terrible. Tu, Th and Sa 8-11 PM. But her main complaint was that she couldn’t go out of state to be at the birth of a new grandchild.

Then the recent surgery to install a dialysis shunt, infections, complications…

How much can one woman take? No wonder she was tired of it all 😦

No matter how sick she was, she was always ready with a joke, a little song. On the recorder where people leave messages for the toll-free number, Cookie left a message May 17, 2002. I’ve always left it in the answering machine, so I could get a lift by hearing Cookie sing one of her inimitable parodies. If you’d like to listen, you can hear Cookie singing and laughing, one more time [file is missing – I’ll try to find it again].

I just cannot believe this. I truly thought of Cookie as a wonder woman who could do it all, and she could pull through this, too.

I guess she got tired of dealing with illness after illness, medications, surgeries, injections, dialysis, everything. I know I get tired just thinking about dealing with any one of these. Cookie put up a very valiant front through everything. She did more to get the word out than almost anyone I know.

Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.

Many thanks to Erin for this last look…


We’ll miss you so much, Sweetie.

Jordiyn (Jordiyn), Undiagnosed Bio

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undiagnosed2

Hello my name is Jordiyn and i have not been definitively diagnosed with Cushing as of yet. Im not really quite sure where to start so ill start at the beginning.

At the age of 19 i started to notice that I was gaining weight very rapidly for no reason. I was very active and I weighed about 120 and then within about 6 months I gained 60 pounds. Then from there I started to gain more weight every month/year. All in all iv gain over 100 pounds in the last 4 years even though i eat pretty healthy and exercise.

With the excessive weight gain I started to notice these pinkish/purplish stretch marks on my hips, stomach,arms and thighs. Plus I gained a lot of weight in my face and my upper back. And then I started to notice that I was so tired and weak all the time.

I think the worst part has been the back pain and that I always feel like I need a nap even though I have a very hard time sleeping. My moods started to change dramatically. I get irritated very fast and I can just start crying and the most random things, I also have really bad anxiety so much so its crippling. My depression is threw the roof.

Last year in October I even tried to kill myself and then 4 months later I tried again. I do have Bipolar and i’m on medication but it feels like none of the medication are working. My psychiatrist just has no idea what is going on with me but he did tell me he thinks there’s something going on that doesn’t relate to my bipolar.

Then last year in October I stopped having my period and this lasted until june of this year so about 9 months. In those 9 months I gain 25 pounds, I literally thought that I was pregnant but every test was negative. After tons of tests and blood work It later turned out that I have PSOD. While I was at my Gynecologist he told me that I look like someone who has Cushing’s and that i needed to talking to my primary care doctor and talk to her about it.

So as of now im waiting for my doctor to send me to an Endocrinologist. I am very nervous that I have Cushing’s. Last year while I was doing some research about all out my symptoms Cushing’s popped up and so I talked with my old doctor about it and all she did was dismiss it. So after I couldn’t get any doctor to listen to me I gave up. Then a doctor finally says to me you may have it and i feel like it a sign from God telling me that I maybe i do have Cushing’s.

I would love to make some friends and actually have someone to talk to about this. Ill keep everyone updated and I’ll also post some pictures too.

I hope to hear from all of you soon.

Jordiyn

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Karen K, Undiagnosed Bio

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undiagnosed2

 

Hi, I’m Karen 51 yrs old, undiagnosed by a doctor, just realized all my crazy symptoms are related and have made an appointment with my doctor for next week.

I think it started in my Mid 30s with very bad acne, horrible migraines with throwing up, vertigo, high blood sugars, major depression, sleep apnea.

My symptoms over the last 12 years are hair loss on my scalp, weight gain no matter what I eat or how much I exercise all in my torso, buffalo hump and fat pads above clavicles, daytime exhaustion, insomnia, bloated feeling, edema in my legs and feet, tendonitis, arthritis and bone spurs, dehydration daily, sweating a lot during the day and at night, bruise easily, muscle weakness, depression, scary crazy mood swings with lots of screaming, no libido, red and white patchy tongue, high blood pressure and diabetes, my face gets red and hot like I’m blushing or have a bad sunburn, then goes back to normal looking, fat face, really bad heartburn everyday several times a day and before I go to bed I need to take antacids, it’s so bad I feel like I’m going to throw up. then theres the strange boil on my back that comes and goes, and the diverticulitis, and most recently a blocked salivary gland! also some back pain by my hump and side pain next to my left breast, I get so angry and I just want to cry all the time, it’s so frustrating, and I’m so so tired everyday.

I have seen doctors for most of these issues. I never thought they had anything to do with each other, I was sick a lot when I was a kid, I just thought I was someone that got sick a lot. Especially with the diabetes, I just assumed I was getting infections because of my weakened immune system and premature menopause.

I’m not sure when I got the hump but it’s in my wedding photo’s. Our 12 year anniversary is coming in January. My periods stopped right before I got married at 40, that’s also when I was diagnosed with diabetes, high blood pressure and high cholesterol, over the last 12 years my weight had gone up and down but mostly up 75 lbs. I eat better now than I ever have, plus there’s all the exercise everyday walking 3-5 miles a day on weekdays.

Recently I was switched to the U500 insulin, so my sugar readings have been great, finally after a few years of very high readings and feeling like crap, diarrhea and vomiting.

I’m so glad I found this website!

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