Sleep apnea | Cushing's Bios

Nicola C (Nikkikicks), Undiagnosed Bio

January 9, 2019

MaryO Undiagnosed antidepressant, epidural, hydrocortisone, prednisolone, sinus infections, Sleep apnea, steroids, weight Leave a comment

Hi my name is Nicola and I’ve been sick since October of 2017.

I kept gaining weight around my face and lower belly despite not eating due to a horrible flu and sinus infection type sickness where I hardly ate for 2 months.

My doctor gave me anti depression meds, sleep apnea tests, hiv test and told me that I was just not active or eating healthy enough. I swore I had pneumonia as I could hardly stay awake and was so so weak. I had a car accident in 7/17 and so I had prednisone and that is when my symptoms started.

I have also been on hydrocortisone trigger point and epidural injections since then and kept feeling worse and worse.

I am trying to cope with constant sinus infections and still juggle work and my family.

I am 40 lbs heavier and I choose between working out, cooking healthy or functioning at work. The cold Colorado weather is like stabbing me with a million tiny knives.

My family thinks I’m being dramatic and my boyfriend thinks that I can still work out 4-6 days a week as I did before my car accident.

At this point I’m trying not to cry or mourn the loss of my healthy lifestyle- I’m literally fighting for my life.

I’m just going to get my official diagnosis and then do all I can to recover.

God bless everyone and I pray that we get better super fast.

My cushing Dr has been a bit abrasive with me. But I will keep you posted.

Jennifer, Undiagnosed Bio

April 2, 2017

MaryO Golden Oldies, Undiagnosed, Update abuse, anxiety, back, Buffalo hump, cycle, depression, Dr. John Jane Jr., Dr. Taher, Dr. William H. Ludlam, Dubai, endocrinologist, Golden Oldie, hair, heart, hypothyroidism, Inferior petrosal sinus sampling, infertility, insomnia, IPSS, MRI, obesity, palpitations, pituitary, Qatari, Seattle, Sleep apnea, stomach, Toprol XL, tumors, weight 2 Comments

Hello, I am a 33 yearl old female who has been living a nightmare for the last 5 years as I have seen my total health delcine before my eyes.

I have gained massive amounts of weight with no medical reason, my monthly cycle has left me, insomnia, severe depression and anxiety for no reason, infertility, allmy obesity is in my stomach and upper back, I have developed sleep apnea from having a thick neck, I have the infamous buffalo hump, hair loss of 50% of my hair, I cannot lose weight no matter what I do, I take these weird week spells where I cannote even get out of bed, hair has literally stopped growing on my legs and other areas of my body, except on my chin and abdomen where I do not want it to grow, my face is round and red and people who see me cannot believe this transformation my body has undertaken and I then have to hear how could have let myself go? If you would just stay on a diet longer than 2 weeks? I am glad that my children are not fat? I could go on and on the emotionally abuse I have had to enudre the last 5-6 years.

I have exercised and exercised to no improvement other than I feel exhausted, I eat a very strict diet, my Mother had to move over here with us because I no longer can care for my children and need her help. I have medical bills back in the states that are like science fiction.

I finally got diagnosed with hypothyroidism and still feel horrible, I have to take Toprol XL for heart palpitations without no explanation from where they are coming from it is so much easier for some physicians to keep just giving you pills instead of trying to figure out what is the root problem.

I now live in a foreign country where it is even harder on me, but I do have an appointment after 10 months with an Endocrinologist here in Doha tomorrow and on November 9th I have an appointment to go see a Cushings Expert in the UAE in Dubai his name is Dr. Taher so I will give an update after theses two visits.

Jennifer
Doha, Qatar

Update December 30, 2007

Hello My name is Jennifer and I am a 33 year old American living in Doha, Qatar (Middle-East), I was finally sent to Dubai and seen an Endocrinologist and he did an MRI and i have two pituitary tumors and he believes that I do have Cushings so he referred me to see Dr. Bill Ludlam, MD in Seatte in January 2008 to get further testing.

I know that there were something worng with me a long time ago but I never knew it was something as stealthy as this disease possibly, I have all the classical symptoms. Also the tesing is so so expensive in the States so I am waiting for the Qatari Governments approval for my medical expenses in Seattle.

I will giva another update soon.

Update May 28, 2008

My current update. I did go see Dr. Ludlam with no avail since my insurance would not pay for him but he did state that I needed further testing so after I left Washington I went to my friends house in Alaska just to have time to think since my husband and I are seperated.

I decided to go back home to West Virginia to be with my family for support and see a Doctor there bringing all my reports and scans to him from the Dr. in the Middle-East and Dr. Ludlmas suggestions.

I seen Dr Yakub and they did tests and all of them came back positive for Cushings my urine, salivory and blood several times came back positive and high for Cushings , also my MRI in January showed that my pituitary tumors are still there.

He is a good doctor and is located in Huntington West Virginia and he not only practices Endocrinology but he is also a Professor of Endocrinology at Marshall University School of Medicine. I will keep all of you updated and thank you so much for your support through this trying time in my life and I pray that all of the Cushies on this board get diagnosed, treated and healed.

Update July 10, 2008

I have finally got my diagnosis and I am heading to the University of Virgnia in Charloettesville on July 23rd! I will update what happens from there. I would also like to say thank you to Christi who has helaped me and talked to me through this difficult time.

Update September 19, 2008

Hello Everyone I am so sorry that it has taken me son long to get back with you I had my Inferior Petrosal Sinus Sampling done this week at the University of Virginia in Charlottesville and it is confirmed I have pituitary dependent Cushings and I am scheduled for surgery the first week of October with Dr. John Jane Jr. They are great at the University of Virginia and I am so thankful for them. I am hoping that someone will take me under their wing while I am getting ready for surgery and give me some advice. I would really appreciate the help.

AllisonChained (AllisonChained), Undiagnosed Bio

September 30, 2015

MaryO Fibromyalgia, Other Diagnosis, Undiagnosed acne, agoraphobia, anxiety, boils, circadian rhythm, depression, Fibromyalgia, Gabapentin, hair loss, headaches, insomnia, pain, panic, Sleep apnea, Stretch marks, Trazodone, vision, yeast infections Leave a comment

I’m becoming increasingly concerned I may have Cushings and I dont know where to start.

In 2006 my health suddenly took a dive. It started with my mental health. I had severe anxiety and depression and panic symptoms. I am currently disabled due to agoraphobia. My fight or flight response was on a hair trigger. My brain would give me sudden urgent DO THIS RIGHT NOW MESSAGES, as though if I didn’t I would be in danger. But the things it was telling me to do was things like jump out of the moving car, put my hand on the stove. I was hospitalized eight times in impatient mental health. I feel like I’m on high alert all the time.

In 2007 I developed insomnia and it’s been very severe ever since. I sleep on average three to five hours a night no more than five nights a week. This past October I didn’t sleep for 9 straight days aside from two one hour naps. I have circadian rhythm disorder and when I do sleep, it’s usually between 8-11am. I also have diagnosed sleep apnea. I take Trazodone, it doesn’t help enough.

I’ve been being treated for the past four years for Fibromyalgia. I was seeing a PT for massage therapy twice a week for two years because I am in serious pain all the time. Every day I have sinus headaches and headaches behind my eyes. I have pain in my lower back/hip/IT band and then in my neck, shoulders and arms. My shoulder joints are so painful I wake up with my arms dead more often than not and I just feel incredibly weak during the day. I take 2700 mg of Gabapentin/day. I am 60.5 inches in height and weigh 297lbs but I have never had high blood pressure. I have a pendulous abdomen and keep getting yeast infections under it. I have tons of stretch marks, adult onset acne cysts/boils and mosquito bites that just wont go away. In the past year I’ve been losing my hair by the handful.

For a while I thought I might have a sex addiction because my hormones were just out of control but then my sex drive abruptly disappeared. My menstrual cycles disappeared as well. I’ve had three in the past five years. And I don’t know if it’s sleep deprivation or what but my vision has gotten so bad lately. I had mild double vision so they put prisms or something in my glasses to raise the vision in one eye slightly and lower it in the other. I used to be able to get by without them but now I feel like I cant see hardly at all without my glasses and I have trouble tolerating light.

I have an appointment with my primary on Tuesday but I frankly do not trust him and I dont know how to bring this up and request to be screened.

Karen K, Undiagnosed Bio

June 26, 2015

MaryO Undiagnosed acne, arthritis, blood sugar, Buffalo hump, depression, edema, exhaustion, hair loss, insomnia, libido, migraines, mood swings, Sleep apnea, supraclavicular fat pads, sweating, tendonitis, vertigo, Weight gain Leave a comment

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!

Elaine, Undiagnosed Bio

March 8, 2015

MaryO Golden Oldies, Other Diagnosis, Thyroid, Undiagnosed ACTH, agressive, arthritis, bloating, cold, cortisol, Golden Oldie, hair, low temperature, memory, MRI, peptic ulcer, Sleep apnea, T3, T4, thyroid, tired, TSH, undiagnosed, weight Leave a comment

Hi my story is so much like all the others that I have been reading on this site.

For the last several years I have been feeling bad, I am tired all the time. I have gained 50 pounds. I have always had a low body temperature and feel the cold more than most people;however in the last 3 years or so I can’t take extreme heat either. I am always either too hot or too cold. Sometimes I sleep for 12 hours and other times I do not sleep at all.

This year I have had people tell me that my personality has changed I am much more aggressive than before. I also look bloated around the face and belly. People keep asking me am I pregnant because my stomach is huge!

In the last 12 months my hair started to fall out. I got an peptic ulcer, been diagnosed with slow digestion, sleep apnea and arthritis of the spine. I used to be able to walk 4 miles in 40 minutes but now I can barely walk a mile. My short term memory is bad and getting worse all the time. I find it really hard to focus. I have had 2 upper respitory infections in the last 10 months which is unusal for me. Also I have dermatitis on my back which just started 4 years ago.

I thought maybe I had a thryoid issue so I went to my GP who sent me for bloodwork. She tested my TSH, T3, T4, ACTH and Cortisol. My TSH’s came back normal (2.7) but my ACTH and Cortisol is high. I don’t have diabetes or high blood pressure although my stress level is through the roof most of the time. Anyway my doctor thought that the ACTH and Cortisol was too high and she asked me if I was getting more headaches. I have always suffered from migraines but in the last couple of years the headaches have gotten worse. She thinks I may have Cushings disease.

My doctor was so concerned that she is sending me for an MRI and I got to a referall to an endo who I will see in two weeks. I will post an update as soon as I know something.

Meriam, Pituitary Bio

April 27, 2014

MaryO Diabetes, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments aches, anxiety, blood clot, blurred vision, bruising, cholesterol, colon inflammation, concentration, congestive heart failure, cortisol, depression, diabetes, double vision, edema, gastric bypass surgery, hair loss, high blood pressure, myopathy, pain, physical therapy, pituitary, Sleep apnea, striae, weight 1 Comment

Hi, my name is Meriam from California, a 51 years old female. I was diagnosed with Cushing’s last August 2013.

I had all the typical symptoms (weight gain, edema, purple marks, bruising, aches all over the body, hair loss, depression, anxiety, uncontrolled diabetes, high blood pressure, high cholesterol, poor concentration, sleep apnea, etc.) I thought all of these problems was partly caused by my weight gain (230 lbs.). I underwent a gastric by-pass but still didn’t lose weight that much.

Eventually. my body seems to shut down and had been and out of the ER. I suffered congestive heart failure, blood clot, blurred/double vision, colon inflamation, body pains and aches, myopathy but the hardest part was, I lost my ability to walk.

It was a rough year for me; been hospitalized for almost a year. Finally, after 6 months of suffering, my Endocrinologist was able to diagnosed me of having Cushings.

My pituitary gland was removed and was given the necessary treatments. As my cortisol level went down, most of my symptoms disappeared except for bouts of body aches and depression.

I am currently doing physical therapy to be able to walk on my own again. I lost weight and on the way to recovery.

My greatest fear is for the Cushing’s to come back and I do not want to undergo the same ordeal again.

Tracie (ktfisher91), Pituitary Bio

November 8, 2013

MaryO Pituitary, Pituitary Surgery, Treatments anxiety, Buffalo hump, CSF leak, depression, edema, Emory University, fatigue, high blood pressure, memory loss, Moon face, muscle ache, painful joints, pituitary, pituitary surgery, remission, Sleep apnea, Stretch marks, striae, swelling, tumor, weight 1 Comment

I am 40 years old and recovering from Cushing’s.

I was diagnosed in May 2012 after several years of being mis-diagnosed and treated for the wrong diseases. I was finally able to have the tumor on my piuitary gland removed at Emory Hospital, Atlanta GA in January 2013, however, I had a CSF leak 4 weeks into recovery and had to go back for the repair surgery in Febuary 2013.

I gained over 80 pounds, developed high blood pressure, developed severe swelling all over but especially in my lower legs, I had to have my eyeglass prescription adjusted, had watering eyes, memory impairment, sleep apenea due to the weight gain, depression, anexity, lovely stretch marks on top of the lovely ones I had from having children, I had started developing the attractive buffalo hump between my shoulder blades to go with my lovely round and red face, and I am sure there are other symptoms that I had that I just can’t think of right now.

I am currently 8 months into remission, however, the recovery process has been a beast! I had very severe muscle fatigue and joint pain to the point that I could not get myself up out of chairs. I am just now able to make it up and downstairs without assistance and muscle pain. I still have some joint pain and overall fatigue. I can not make it much past 9pm without having to go to bed.

However, on a good note I have lost 40 pounds so far and I plan on loosing the next 40 pounds by this time next year! I did go back to work fulltime in April 2013 and I started my college classes back in August 2013. I did not let Cushing’s stop me from living and I have not let the difficult recovery stop me either.

It would have been easy for me to give up, but that is not the life I wanted!

Michelle, Adrenal Bio

September 25, 2013

MaryO Adrenal, Diabetes, Golden Oldies, Other Diagnosis anemia, anxiety, diabetes, fatigue, Fibromyalgia, heart burn, high blood pressure, low blood pressure, obesity, Sleep apnea, Vitamin D Deficiency 1 Comment

A Golden Oldie

I am 37 years old and was recently diagnosed with Cushing within the last month.

In 2010 I was injured on my left leg and for the past three years have been going through medical doctor to doctor. I was only able to return to work for a month and had to go back out on disability because of symptoms. I would get weird mysterious symptoms every month, my doctor said there was clearly something going on in my body. I have been diagnosed with heart burns, sleep apnea, low blood pressure, high blood pressure, vitamin d deficiency, anemia, possible diabetes, now obesity, fatigue,anxiety, and fibromyalgia.

It has been a very long process to get to the Cushings diagnosis. Prior to all of this I did not have any serious health problems, I was a litigation attorney, every day I was in court running around with no health problems. I am hoping that I am on the road to recovery since I have been finally diagnosed.

Susan W, Pituitary Bio

September 15, 2013

MaryO Adrenal, Diabetes, Golden Oldies, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments Addison's disease, adrenals, cortisol, Cushing Syndrome, depression, diabetes, Dr. Ed Oldfield, Dr. James Findling, fatigue, gamma knife, high blood pressure, high cholesterol, Magnetic resonance imaging, muscle weakness, nodule, obesity, Pituitary adenoma, radiation, Sleep apnea, X-ray computed tomography Leave a comment

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.

Lee (lee1958), Undiagnosed bio

September 14, 2013

MaryO Undiagnosed 24-hour urinary free cortisol, ACTH, bloodwork, cardiologist, cortisol, edema, endocrinologist, high blood pressure, high cholesterol, joint stiffness, liver, muscle weakness, Sleep apnea, UFC, weight 2 Comments

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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Cushing's Bios

Nicola C (Nikkikicks), Undiagnosed Bio

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