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Dennis O, Pituitary Bio

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In February 2013 I was diagnosed with Cushing’s disease.

Over the previous 6 years, I have suffered from a variety of problems including Deep Vein Thrombosis and a Pulmonary Embolism, compressed fracture of the spine, torn achilles (right leg), ruptured achilles (left leg), several ulcers in my left leg and one in my right, hypertension, high cholesterol and atrial fibrillation. Lesser injuries included a number of torn hamstrings and groins. Prior to that, I had no significant medical problems.

I also put on 14kg (30 pound) in weight. Up to 1997, I was a little overweight but very fit, taking part in distance running including a half marathon. My training routine lessened and I put on weight. The injuries I was having limited my ability to train.

My legs become very weak and have that ache that you get from working out – something which I have had to discontinue due to the weakness. Climbing stairs in particular was difficult. I have stenosis of the spine which causes sciatica which is very painful. I have lost strength in my arms as well as my legs.

When I was diagnosed with possible Cushings, I had never heard of the disease and of course got busy on the internet and read about the symptoms, causes and cures. I found myself hoping to have the disease which is bizarre given the seriousness of the condition and the havoc it causes on the body. The fact that it is not only curable but most of the problems are reversible offers me a quality of life that I thought I could never have again. (since then it has become apparent only some of the problems are likely to reverse)

I underwent testing to confirm I had Cushing’s syndrome and the particular form I had (turned out to be Cushing’s disease). I had extremely high levels of cortisol and a combination of the cortisol and dexamethasone used for testing sent me into a manic state. I had turns where I couldn’t speak. These lasted for about a minute and I had many of them.

I went by ambulance to hospital by ambulance and was admitted. I remained in hospital for 9 weeks, the first 5 of which I was in a manic state. I can’t remember much about that but from all reports I was a very difficult patient. The medical staff tried a variety of treatments until they finally found one which worked.

While was happening, I had several MRI scans on my pituitary gland which failed to find the tumour.

Since then I have had the MRI’s repeated on two occasional but to no avail. This is a common problem with the disease because the tumour is very small

My spell in hospital weakened me to the stage where I was in a wheelchair. I took on rehabilitation and am now walking unaided, albeit with a limp. The pace I can walk is slow but gradually improving. All in all my health has improved dramatically.’

My doctors have decided that they could not operate on me due to my poor health and the fact that they could not find the tumour. As a temporary measure I am taking ketoconozole to control my cortisol levels. That is working well and I am being to show signs that the symptoms of Cushing’s are reversing (loss of weight and, moon face going and strength returning).  However, my cortisol levels are at the high end of normal and this appears to be limiting the pace of my recovery.

Ketoconozole is not a drug which should be taken for long periods, and we are hoping that the tumour shows in future scans. An added complication is that the original manufacturer has ceased manufacture and I am reliant on a generic I am importing from India.

I have returned to playing golf generally twice a week. I have been attending a specialised gym which works on strengthening my back. The pain is becoming less frequent and less in intensity.

I do suffer from excessive swelling in my legs, particularly the left leg where I had the DVT. My vascular surgeon operated on this to improve blood flow. He believes that the current swelling is due to poor circulation and has prescribed full length stockings to be worn during waking hours. He also recommends a targeted exercise program to improve the blood flow in my leg.

I have recently started working with a physio and this seems to be helping.

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Diana B (Diana Brown), Undiagnosed Bio

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Hi, My name is Diana. I have been sick for over two years now.

I have had kidney stones for the last 2 1/2 years, constantly passing them and have had three surgeries related to that.I still have seven stones left in both kidneys total. I didn’t feel well after the second surgery, and never recovered from the third which was last August. I have been to 3 urologists, thinking it was a urological problem. They all told me it was not connected to my stone problem.

I have been to two nephrologists and two endocrinologists and a cardiologist along with my Primary Care. The second nephrologist told me he knew what my problem was, Cushing’s Syndrome. That was when I went to my second endocrinologist because my own endo wasn’t on the same page, however she did no further testing and at first told me she thought I was borderline cushing’s followed by a phone call telling me she didn’t think I had it.

I have an adrenal adenoma in my left adrenal gland.I am going to see Dr. Theodore Friedman next month.

Here are my symptoms:

Easily out of breath (don’t know what you call the meter the doctors use to measure your oxygen but my oxygen is low on that meter)

Recently diagnosed with pre diabetes with random high glucose readings but did not test positive for Diabetes with a Glucose Tolerance Test

Tachycardia (never had this before getting ill) that wakes me up in the middle of the night, this started after my third surgery

Extreme fatigue/ as tired when I get up as when I go to bed.

Muscle weakness with any exertion, especially going up stairs and most days just walking across the room

Pallor

low grade fever on and off

blood pressure that fluctuates between 97/67 to 136/84 was always low and has increased frequently

Rising cholesterol over the last couple of years with no change in diet

Right flank pain

Low back pain

Burning pain in upper buttocks and upper back thighs

Stomach and groin pain

Extreme hip pain

Shaky and fine tremor in hands and sometimes my head also shakes

Mildly elevated cortisol (24hr urine cortisol test)

Have been diagnosed with osteopenia in the past

Hashimoto’s

I break out with clammy/flushing skin sometimes during the day but mostly at night.

Cannot tolerate carbohydrates (not for many years) /have many food intolerances

Easy bruising

So, that’s pretty much it. Thank you for letting me join!

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Robin, Adrenal Bio

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golden-oldie

Hello my name is Robin  new to this site.

Had surgery for cushing disease for adrenal tumor 10 years ago. Lost the right kidney due to a blood clot 6 months after my surgery.  Was doing really well then 5 years later got Thyriod cancer so they removed my thyroid.

i am doing really well but i have alot of days where i have real bad muscle weakness,tiredness and just drain alot of times.At these times the doctor has checked my blood work and says everything is normal.but i think not.

Have considered maybe taking some kind of herbs for the adrenal gland.but a little scared to try that . But i am interested in finding out.

Thank you

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Shannon, Pituitary Bio

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A Golden Oldie

The pituitary gland

The pituitary gland

I’m 31 years old and feel like I’m 80.  I’ve been ill for so many different things over the past couple of years.

In the past year alone I’ve seen 5 doctors who couldn’t tell me the time. They made me feel like I was crazy. Even when I got double vision in my right eye and had to wear an eye patch for 3 months. No one could figure out why.  I still have vision disturbances but after two med packs of steriods the double vision went away.

I came across this web site last week and connected with so many things from other people. I printed off the sheets and took them to a new neurologist I was scheduled to see.  To my amazement he completly agreed with me! He said it was very likely I did have cushings and/or PCOS.

He scheduled an appointment for a Endocrinologist that specializes in this area and I am to see them Tuesday. I will update from then but I want to say I’m grateful for this site because it gave me some hope of an answer. I’ve been so miserable. I felt like my soul was trapped by my body and I didn’t even have the energy to make it better.

If you’re doctor makes you feel crazy, find another one. I know even with insurance it’s expensive but help is imperative.

Here’s a list of my symptoms:

-hump on my neck (have had for a while and thought it was from bad posture!)
-cyctic acne
-hair loss
-hair growth where it should not be
-loss of libido (I’m 31 this is so not right)
-fatigue
-muscle weakness
-back pain
-fat in the middle
-moon face
-horrible stretch marks
-no period for over a year (my last gyno told me I was just lucky)
-vision disturbances
-depression
-anxiety
-hypertension
-extremly low cholesterol
-hard to breathe, like there’s somthing heavy on my chest
-reoccurent kidney stones
-cyst on ovaries
-frequent bathroom visits
-terrible constipation
-swelling of legs and feet
-water rentention

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Susan W, Pituitary Bio

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A Golden Oldie

After 2.5 yrs of testing, I was diagnosed with Cushing’s (which was un-diagnosed for over 20 yrs).  My Pituitary Tumor was removed on 10/20/11.

My surgeon has recommended Radiation/Gamma Knife treatment which will be discussed at my post srgery checkup 1/10/12.  I also have noduals on both my adrenals.

Other symptoms:  obesity, diabetes, high blood pressure, high cholesterol, muscle weakness, sleep apnea, fatigue and depression.


Susan submitted a second version of her bio.

My testing -> diagnosis -> surgery journey took 2.5 years.  I have always had a weight problem.  All my Doctors ever asked if I was interested in a liquid diet, liposuction, gastro bypass or go to Weight Watchers, and eat less.  But when I reached 375 lbs I knew something had to be done.  Things were way out of control.  I could no longer handle this by myself, I needed HELP.

I had seen comercials on TV which talked about excess Cortisol leading to excess belly fat .   So, I asked my Primary Care Doctor if she could test my Cortisol level.  She just laughed and said I would have to go to an Endocrinologist (Endo).  She did not even provide a referral.  Through my insurance company I found an Endo.  On 7/3/09,  my first appointment with the Endo, she agreed to test me but felt I just had a fatty liver.

When the test results came back, they showing excess Cortisol.  This started a series of saliva, blood test, 24 hr urine, MRI, and CAT Scan tests.  Then I was referred to another Endo Dr Findling in WI (I live in IL) for another opinion and the IPSS test..  (Dr Findling said I looked like I had Cushings for over 10 yrs.)  This was followed by Ostrascam and PET Scan.  Armed with the diagnosis of Cushing’s Disease we were off to get a surgeon.  The first doctor I seen in IL was a bust.  Then I was referred to Dr Oldfield in VA, who performed my surgery on 10/20/11.

Now in recovery, I still get weak, tired and sleep a lot.  I have been using a walker and cane to get around.  Interesting to see that other Cushings also have problems with mobility, aches and pains.  I hope this gets better.  I have follow-up appointment 12/21/11 and 1/11/12 with the Endo and surgeon.  I am off my High Blood Pressure and 2 of the 3 Diabetes meds.  I have lost 30 lbs in the 7 wks since surgery.   I can;t wait, 1 more wk before I can start swimming again.

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Lee (lee1958), Undiagnosed bio

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Hello.  I just joined so hopefully I will learn more about Cushing’s and find support and encouragement.  I’m not sure if I have Cushing’s yet.

I’ve suffered for years with gaining weight and in the past few years, it seems that no matter what I did, the weight was glued on.  And, it got more difficult to stay active.  Even walking like I used to enjoy has become very hard.  This past year, I gained a lot of weight in a short amount of time.  I’ve been considering weight loss surgery, in fact.

My other symptoms:  high blood pressure, high cholesterol, fatigue, muscle weakness, joint stiffness, my bones hurt, sleep apnea, edema that started in my feet and ankles, but seems to be throughout my body now…and yes, my face has changed drastically.

I don’t go out like I used to.  I work, come home, go to bed.  When invited out, I make excuses so I don’t have to go out.  Recently, I had a doctor visit with my cardiologist and he said he thought I might have Cushings.  He referred me to an endocrinologist who I have not seen yet.  My appointment is in 2 weeks.

In the meantime, he ordered some bloodwork and a 24 hour urine.  So far all the bloodwork is normal.  Even the ACTH was normal.  I have to do my 24 hour urine tomorrow and also the AM/PM Cortisol.  Part of me is dreading the results, and part of me wants to know why I can’t lose weight.

Everyone makes you feel like it’s all your fault.  I can’t even get my Gastric Bypass unless I lose 30 pounds first and I have tried and failed. I don’t even know if I can have the surgery if I find out that I have Cushings.

Can you have Cushings with a normal ACTH?  I’m so confused.  Any help would be appreciated.

~~~~~~~

She also submitted a second version:

First, I thought I posted, but maybe it didn’t go through.  Starting again. I’m 55,

I haven’t been diagnosed yet, but I was at my Cardiologist’s last week and he seemed perplexed with all my undiagnosed symptoms.  I have a plethora of problems beginning with weight.

I’ve been battling my weight for the past 10 years, but about 4 years ago it seems that no matter how active I was, I wouldn’t lose, in fact, I gained.  It didn’t seem reasonable to be working out, eating right and still gaining.  This past year alone, I gained 45 pounds in a few short months.  It’s made me feel so sick!

I’ve been forging ahead to have weight loss surgery, but they want me to try to lose about 30 pounds first and I just can’t.  It’s a losing battle.  And I don’t even know IF I can have the gastric bypass if I am diagnosed with Cushings.

Other symptoms:  High BP, extreme fatigue, muscle weakness, joint pain, my bones hurt, even lifting a coffee mug feels like my wrist is giong to break!  I have edema that started in my feet/ankles but my whole body feels waterlogged.  My liver is enlarged and throwing off high AST/ASL results.  I have sleep apnea and it was untreated for a few years, so I developed Pulmonary Hypertension.

My face has changed this past year, I don’t even recognize myself.  So, my Cardiologist says he thinks I may have Cushing’s.  He has set up a referrel to an endocrinologist, which is in 2 weeks.  But, he did order a slew of tests.

So far, everything is normal…including my ACTH.  Tomorrow, I am doing my 24 hour urine and my AM/PM Cortisol.  Can you have a normal ACTH and still have Cushing’s? I’m anxious to find out but almost hoping that I have Cushing’s, as it will be an answer to what is happening to me.

Anyway, glad to have found this support group!

Thank you in advance for any support/encouragement.

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Britney (PandaBearHobbit), Undiagnosed BIo

2 Comments

I’m a 25 year old who’s in the middle of being tested for Cushing’s.

I have very high anxiety, hirsutism, fatigue, muscle weakness, can’t lose weight, acne, irregular periods, very high testosterone (163, normal is below 79 for women), always thirsty & pee often, ect.  My doctor referred me to an endocrinologist, and I was diagnosed with PCOS.  My cortisol levels were never tested.  I was put on birth control & metformin and the doctors told me that would help with everything.

After being on these medications for two years and seeing little to no improvement I started to do my own research.  I went to my endocrinologist and brought up the possibility of Cushing’s.  She assured me that it is too rare and I am fine.  I would’ve just taken her word for it, because I figured she knew what she was talking about, but my wonderful husband pushed for us to go ahead and do the tests.  I’m SO glad that he did.  All of the many, many tests have come back abnormal.  I’ve never had so many blood, urine, & saliva tests in my life!  After months of testing, my doctor said that Cushing’s is looking more and more likely.

I struggle immensly with weight loss.  My mother is a personal trainer and has always been in amazing shape.  She & the rest of my family told me I wasn’t doing enough to lose weight.  At one point I was working out 4 hrs EVERY DAY at the gym in addition to having a very physically demanding job.  I was able to lose a couple pounds, but that was it.  I eat healthy, and I’m not just saying that… I really do!  haha!  I’m a vegetarian, eat loads of fresh fruit & veggies, & try to keep my caloric intake to about 1500 calories a day!  I recently found information that a lot of exercising can actually raise my cortisol levels, which are already high.  So, I’ve taken my workouts down to brisk walking for 30-45 min.  Which, after years of intense working out, is weird for me.  I have never been able to lose weight on my belly and face.

I really struggle with anxiety & Irritability, and I hate it.  I get anxious about everything and it drives me crazy.  I compete in dog agility & get so anxious before & after I go into the ring that my pulse is over 180 & I shake (Just while I’m standing there!).  I love the sport so much, though, that I’d never give it up!  My dogs are my life!  I want to be able to compete & be able to enjoy it more, without all the intense anxiety!  I lack emotional control at times, and it tears me up.  I am a very loving person, and hate putting my loved ones through that.  When I lose my temper, I can’t control myself.  Once I come down from it, I feel aweful & can’t believe the things I said or did.  I feel like a crazy person!

I often have mental fogginess & insomnia as well.  Trying to focus on something is difficult, which made college a real struggle.  It’s not rare for me to go through patterns of insomnia, where I can only sleep a few hours a night.

Hoping to get officially diagnosed soon, so I can move forward with treatment.  I’m so eager to get all this figured out and feel “normal” again!

~~~

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