June 9, 2026
MaryO
Cyclic
Buffalo hump, Conditions and Diseases, Cushing Syndrome, cushing's, dex test, Diagnosis, endo, Health, hirsuitism, microadenoma, pertussis, pituitary, pituitary scans, thyroid, Weight gain, whooping cough
I was diagnosed with Cushings in 2005 after 10 years of living the nightmare.
My first symptom was a 30 pound weight gain in 1995 over only 3 weeks. My MD told me to go on a diet. At the time I had whooping cough and was bed-ridden and not eating anything. I thought it was my thyroid, which I had problems with since giving birth in 1983.
I was diagnosed by my endo, who soon after became my primary physician as well. It was very hard to diagnose the Cushings as it is cyclic, but finally in 2005 a dexa test finally showed up. We had tried everything at that point.
I did have pituitary scans; the first time showed a microadenoma of about 5mm in the left lobe. When he repeated the test that was gone and there was a 2mm one on the right side. That too disappeared, but at the time I was going to healing masses often.
We cannot find the cortisol producing tumor, so we just try to keep me calm and address the symptoms to make me as comfortable as possible. The ONLY symptom I do not have is the striae, but I have every other one including the lovely moon face, hump back and GASP whiskers.
Thank the Lord God above for tweezers and hair removal products!
May 19, 2026
MaryO
Adrenal
adrenal gland, bladder, Blood pressure, California, Chiropractor, Conditions and Diseases, cortisol, CT scan, cushing, Cushing Syndrome, dexamethasone suppression test, emotional symptoms, Health, hip surgery, irregular periods, moonface, nodule, Northern California, ORIF, Orthopedics, pain, pulmonary embolism, thin skin, thyroid, UFC, urinalysis, weight, X-rays
Hi I am a 34 year old female who has just been diagnosed with Cushing’s Syndrome. I am married with two children ages 10 and 4. My husband is an active duty Marine and I am a former Marine.
I’ve always been healthy up until now. I had pretty much a yawn worthy medical history and I wish I still did. I guess it started two years ago when I started having to use the bathroom frequently at night. I did go to the doctor and they just told me to quit drinking before bedtime. I chalked it up to having children and maybe just a weak bladder. I wasn’t thinking rare disease.
Then I noticed that I started to gain weight and my close weren’t fitting right at all. I chalked that up to sitting at my desk job all day and not getting enough exercise. I did go to the doctor to have my thyroid tested and it came back normal. So once again I am thinking it is me and I just need to exercise more.
My husband received orders to California and we moved here in July of 2012. By this time my emotions are all over the place, my weight keeps creeping up but I think it is just stress. Determined to get back in shape I start exercising everyday at 630 in the morning. Normally I am not a morning person by any means but since we moved here I find it hard to sleep. I worked out for three months following an exercise regiment but the weight stayed on. My periods started to be further in between and would only last a couple of days, I went to the doctor for that as well. I was told there is “irregular” periods and then there is “irregular” periods and mine were not that bad. I had them test my thyroid again, it was normal.
Once again determined to beat the weight I started walking vigourously and watching my calorie intake. I noticed that I would have tingling in my toes at times and that my calves seemed weak. I thought I pulled a groin muscle but I didn’t let it slow me down I just kept going. My face started to get rounder and puffier, my skin seemed so thin that I could see all of the vessels. I knew something was wrong but I couldn’t put my finger on it.
I started to do my research on the internet and that is when I discovered Cushing’s. But I thought it is so rare I can’t have this. I started going to a Chiropractor for neck pain and when they took my blood pressure they were so alarmed they took it a couple of times to double check.
In March I went back to the doctor and told them to test my cortisol levels. My husband was due to deploy in April so he planned a surprise vacation to Angel’s Camp in Northern California. By this time I can hardly walk because of my pulled groin muscle, but I was determined to have fun with my family.
The second day we were on vacation I could hardly walk so I went to prompt care and had x-rays done. The x-rays did not show anything so they sent me on my way with crutches. By the 4th day of vacay I stayed in bed resting because I really couldn’t walk. I got up to use the restroom and I had the crutches and fell backwards. I ended up fracturing my hip. I had surgery and told the doctors I was currently getting tested for Cushing’s and that my 24 hour urine test came back abnormal.
They had a really hard time keeping my blood pressure under control during my hospital stay. While I was on vacation the endocrinologist office had called me to schedule an appointment but first I had to have another 24 hour urine test and dexamethasone test done before the appointment which was scheduled for April 23. Well upon our arrival back home I was referred to Orthopedics because of my hip.
Ortho took x-rays and it was determined that after the surgery my hip was not aligned right and a second surgery ORIF was needed. It was conveniently scheduled for April 23 (the day I was supposed to see Endo). I had my second hip surgery done and while I was in the hospital they were so concerned with my heart rate and blood pressure they did a CAT Scan for pulmonary embolism.
Well thankfully I did not have a PE but they did discover a nodule on my left adrenal gland. I am having it removed on June 11th and from what I’ve read I am terrified of the aftermath.
Is there any good news out there? I really hope so, I just want to be healthy and enjoy life again!
May 12, 2026
MaryO
Undiagnosed
antidepressant, Blood test, bruising, chronic sinusitis, concentration, cushing's syndrome, depression, EEG, Electroencephalography, epilepsy, Epileptic seizure, fatigue, foot pain, lethargic, Magnetic resonance imaging, Major depressive disorder, moonface, MRI, pain, PCOS, periods, Polycystic ovary syndrome, seizures, sinus infections, Stretch marks, striae, thin skin, thyroid, weight
Hi Everyone
I suspect I may have cushing’s syndrome or disease but all I know for sure is I’m sick, I don’t know what’s wrong with me……..and I want to get better.
I just turned 25 in March but looking back i think i’ve been showing symptoms for the last 13 years.
At the age of 13 over the school holidays I gained a bunch of weight (14 kg in a month and a half) and since then my weight just keeps climbing up. I also became lethargic, depressed, unmmotivated, struggled with my concentration and continue to do so. The stretch marks followed the weight gain. I definitely have a really round face, which I guess could be moon face. My face gets really red and flushed. I have very little body hair but its quite strange that i have hair growth on the lower part of my fingers and toes. I have a significant amount of foot pain especially when I get up in the mornings. I have lower back pain too. I wouldn’t say my periods are highly irregular but they are often off from my usual 28 day cycle by about 5 to 14 days. This is becoming a more frequent occurrence. My skin is really thin, soft and doesn’t heal well. Small cuts and bruises take longer than usual to heal and almost always leave scars. I feel hungry and tired all the time.
The depression and fatigue is by far the most debilitating of all the symptoms I have suffered from. My grades in school and later on University have steadily dropped since the age of 13. I find it really hard to concentrate. It was only when I began failing in uni that my parents finally allowed me to see a doctor who was a psychiatrist in 2009.
I had an abnormal EEG showing evidence of seizures. The evidence was not sufficient enough to diagnose me with epilepsy but he called it seizure equivalent depressson. I was then put on heavy rounds of anti-depressants and anti-convulsants which kept on being adjusted. Different dosages and combinations would work for awhile then stop so that meant more combinations, stronger drugs and higher dosages. To cut a long story short I finally quit the meds in Dec 2011 and began to see a new psychiatrist in May 2012 who ordered blood tests, a thyroid test, sleep-deprived EEG and an MRI.
My blood sugar and cholestrol is normal but heading towards the high range which worries me but not suprising given that I’m obese. The EEG again showed slight evidence of seizures but when I was referred to a neurologist he said I show no evidence of seizures and that normal people have abnormal EEGs all the time(?????) This is despite a history of epilepsy on my Dad’s side of the family. What about non-convulsive seizures-could this explain the lack of poor concentration?
The MRI came out normal, only showed that I suffer from chronic sinusitis. But then again it wasn’t done by a specialist in the diagnosis of pituitary tumours and they most definitely were not looking for one so if there is a microadenoma, its flown under the radar. The blood tests showed I have a low white blood cell count (neutrophils and monocytes). My cortisol level was normal but then again it wasn’t a 24-hour cortisol test.
From my own research I found that chronic sinusitis could be linked to the depression but my Psychiatrist seemed to be unwilling to explore these leads any further and advised me to stop researching so much online. At the same time he put me a new round of anti-depressants and anti-convulsants which left me feeling weak, tired and drained. For the first two weeks I slept all day and could barely get out of bed. I quit these too in September 2012 and since them haven’t seen any doctors but symptoms remain and its a struggle to live with them every day.
I am still financially dependent on my parents who are tired of my constant “depression” which they feel is an attitude problem so I don’t even speak about it with them any more. They feel I should just try harder. I hope to graduate from Uni this year but due to my health problems I’m 3 years behind and my grades have suffered. I have health insurance which makes it very difficult to get referrals to specialists and they hardly covers pre-exisitng conditions. All treatment described above was paid for by my parents and not health insurance. They are retired now and don’t want to spend a ton of money they don’t necessarily have, looking for a phantom condition. I understand their point of view but I feel if I had a child I would do all I could to help them get better.
The more time that passes the more difficult it becomes and the more paralysed I feel. I have a part time internship at a law firm that is even becoming too much now. I can barely study. I’ve lost almost all my friends either because I isolate myself or am too tired and depressed to be there for them like a good friend should.
As of March 2013 I went to see a gynacologist about my irregular periods he ordered another thyroid test, prolactin test and a Pelvic scan so i’ll see how that goes….maybe its PCOS.
Anyway I have no one to talk to . I don’t know what to do next. I wonder if anyone else has been/is in a similar position.
Thanks for listening
HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | CushieWiki
May 9, 2026
MaryO
Addison's Disease, Adrenal, Adrenal Surgery, Ectopic, Pituitary Surgery, Thyroid, Treatments
Addison's disease, adrenal gland, adrenal glands, adrenals, bilateral adrenalectomy, BLA, Blood test, Buffalo hump, Conditions and Diseases, cortisol, cushing, Cushing Syndrome, DI, diabetes insipidus, fatigue, headache, Health, Ketoconazole, Mass General, migraines, mood swings, muscle weakness, pituitary surgery, surgery, sweating, thyroid, UFC, urine, weight
I was diagnosed with Cushing Syndrome in June 1999. At that time my urine cotisol level was 342.
Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.
I had pituitary surgery at Mass General because my state didn’t do that type of surgery. After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.
When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.
In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.
I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!
May 8, 2026
MaryO
Undiagnosed
acne, anxiety, Blood test, bruising, Celiac, cortisol, Crohn's, cushing's syndrome, depression, diarrhea, dry skin, eczema, fatigue, Fibromyalgia, hair, Health, high blood pressure, hypertension, IBS, insomnia, Irritable bowel syndrome, kidney infection, kidney stones, low ferritin, low iron, night sweats, painful joints, periods, skin, thyroid, UFC, Vitamin B, Vitamin D Deficiency, weight, Weight gain, Weight loss, Weight Watchers
I have many Cushings symptoms. I developed severe, often incapacitating IBS nearly 12 years ago and believed I had Crohn’s or Celiac Disease. All tests came back negative.
Around 5 years ago my symptoms got worse, and my normally thin to average weight shot up, despite normal diet and exercise. I became depressed, anxious, and had painful joints and flu-like symptoms. I also had irregular periods and skin problems (dry skin/eczema, acne, frequent brusing and skin infections and bug bites that never healed). My blood pressure at times was high and other times normal, my face would flush, and I had kidney infections and kidney stones. My hair started to thin. The worst part was the weight gain- all in the face and stomach area; although my arms and legs were thin by stomach was bloated and very heavy.
I was told by several doctors to excerise and diet and have– nothing works. I had blood tests done and they found low ferritin, very low iron/Vitamin B/Vitamin D, alternating high and low blood pressure & thyroid. I was diagnosed with anxiety or fibromyaligia, depending what doctor I went to. I was told I did not have IBS, although I have diarrhea almsot daily.
I also have low muscle tone, poor energy, insomnia, chronic fatigue during the day, and wake up in night sweats.
The one test that was finally ordered for high cortisol (24 hour urine test) came back ‘normal’ range– so either it was a fluke or I really am crazy.
I don’t know what to do. Doctors, family and friends, tell me “just diet and exercise”–thinking weight gain is just a willpower issue– but what about all these other symptoms? I feel like I have flu every da y and miserable. My joints ache severly and although I have been working out, calorie counting, and doing Weight Watchers, and (alternately raw vegan and liquid diets) for months I don’t lose any weight and look 7 months pregnant.
I need advice.
May 7, 2026
MaryO
Diabetes, Hashimoto's, PCOS
Blood test, Buffalo hump, cushing, cushing's syndrome, Endocrinology, Hashimoto's, Middle East, moonface, Nasonex, PCOS, Polycystic ovary syndrome, sweating, thyroid
In seeing an endocrinologist about normalizing my thyroid levels (Hashimoto’s), he became suspicious of Cushing’s.
I was diagnosed with PCOS in 2006 with a suspected onset of 13-14. We’ve done one blood test that came back further pointing to Cushing’s along with the signs & symptoms (i.e. buffalo hump, moon face, sweating, ruddy complexion, etc…). I will be seeing another endocrinologist in the near future (current one is closing his practice & moving to the Middle East) to confirm a diagnosis of Cushing’s.
If I do have Cushing’s it has to be endogenous, as I do not take any steroid mediations that are known to cause exogenous Cushing’s. I take Nasonex periodically, but not any more than I absolutely have to & I’m told that is too small a dose to be a problem.
Wish me luck in getting answers.
May 7, 2026
MaryO
Steroid-Induced, Thyroid
bloodwork, cardiac ablation, Conditions and Diseases, depression, ER, Health, Medical Specialties, Medicine, pain, Pain Management, pericardium, pleurisy, Prednisone, PVC, thyroid, ultrasound, X-rays
I am 61 and have been taking prednisone for over 3 years without a successful taper. My journey begans with a cardiac ablation for PVC’s , that ended with my heart being punctured during the precedure. I came home after 2 days in the hospital without a problem. On the 3 day, pain in my chest was unbearable. I thought it was a heart attach. Called the Dr., he prescribed a prednisone pack, like you take for poison ivy. A week so later, I was in the ER with the same pain. More prednisone, higher dose. ER visits have been to many to count by now. Many chest exrays, ultra sounds, echos, with no sign of fluid around the pericardium.
Last ER visit, June 2012, this time it was pleruisy. Seems this inflamation just move around in my upper body. So higher doses of prednisone and send home to taper again. Today I had a bad day, as I have been trying to taper and the pain comes back, this time in my shoulder and right chest. I took 25 mg. today and am pain free now.
My problem other than addiction to prednisone is that no Dr. will treat me. My cardi says its not his problem, even my primary will not treat me. Says she will not prescribe prednisone. An endo. Dr. at John Hopkins prescribed me 1 mg. tablets last year with refil, however, I am down to my last bottle and using fast.. The endo was my thyroid Dr., had the thryoid removed last Aug., anyway, I would like to know if anyone out there knows a Dr. in the D.C/ Baltimore Metro area that they have used that treats prednisone addiction? I am lost to fix this., with no help so far, unless I end up in the ER, then that is only a temp. fix.
I went to my regular Dr. last week, as follow up to ER and she said, ”It sucks to be addicted to prednisone doesn’t it. ” Told me she couldn’t find anything wrong with me and was ready to leave, Iask if she could at least do blood work, make sure all was o.k., since I was on this drug. She signed the lab slip.I still have it, don’t even want to do that.. just depressed about the entire ordeal at this point.
Thanks for listening.
May 6, 2026
MaryO
Adrenal Insufficiency, Adrenal Surgery, Bipolar, Diabetes, Pituitary, Pituitary Surgery, Recurrence, Thyroid, Treatments
Addison's disease, Adrenal, adrenal gland, adrenal glands, Austin Powers, bilateral adrenalectomy, Bipolar, BLA, cushing, cushing's syndrome, Depakote, diabetes, dog, dopamine, double vision, e. coli, Family medicine, fatigue, fludrocort, Health, heart attack, hydrocortisone, OHSU, Paul Newman, potassium, recurrence, thyroid, Vicodin, vomiting, weight
I Am 52 yrs. old . My sympmtoms began when I was 40 yrs. old. I was at at a yearly physical. I was extremeley athletic. I used to ren 70 miles a week. when I was 17 to 19… dopamine I believe kept me well.
One year prior to my symptoms ..I was 39. I was very fatiquiged..my children were suffwering. They were 6 and 9. They are now 17 and 20. I feel I stopped raising them at this age. If any of you have seen the Sting the movie with Paul Newman obbserve that he dunked his head in ice. I was at Lincoln city , Oregon when I attemted this. procedure. I say procedure and I didn’t even know a tumor was forming on my pituairy gland. Who kneew? Not me. It didn’t even occur to me that a growth was growing in my brain!!
I went from 135lb to 265lb. in 3 months. I was so frightented!!!!!!!!!! My doctor told me to go to an encronologist…very important DOCTOR!!! Most doctors do not have the slighist idea what Cuhing’s is ..Dogs ,horses, and PEOPLE get it. Some doctors are either dumb or totally ignorant. The E. doctor said it looked like I had Cushing’s syndrome. I then made him fall off his chair in laughfter! My family and I recently put a family dog down with Cushing’s disease. I wanted to know if it was contagious?? No, he said wiping his eyes from laughing. He appologigized when I started crying.. I wanted to know how I got it. My dogs was in the adrenal glands. Fatal. We said goog-bye to BUDDY>> My doctor said he hoped I did not have the same dianosis.
After thousands of dollars later..Thank goodness we had great West insuanarce..Get it if you can. Covered everything 100 percent. Discovered a benign tumor on my left pituiary gland. They removed it through my nose . I also had my 9th sinus surgury. It was also from my left nostril. I got fake diabetes. It went away when I left the hospital. The weight started dropping with the help of a nutrisionist. I was taking hydrocortisone. pills. I lost 65 lbs. A few years later my head started hurtimg worse.
After One day of test at a major University OHSU I was diagnosed again with the same tumor . but 3x’s bigger . Surgery through my mouth. Weight came back and some. I asked what my options were? #00lbs, heart attack and death. They told me to remove my adrenal glands. I did. I now have diabetes ,I take 200mg. because my thyroid is so large. Guiess what?? My immunec system is nill.
I wanted to be healthy I loved bananas… get what I got ?? I got the e-coli scare with the spinacach in the bag. E.R. 3 weeks . Everyone in yellow smocks.. No visitors! June 2007… I lost 40 lbs. I was going out to lunch with my husband saw double. Uncontrollable votimiting… E.R. Encronologist. or family doctor. After driving 90 miles an hour 45 minutes away we arrived. I was talking all the way through it . No pulse ..I said am I dead? My doctor said Shut up. No heartbeat. I said am I dead yet? She said shut up agin. I wass vvvvvvvvv teching. I said where are the cameras for HOUSE the t.v. show. I sell novelty neck ties my huband Allen just so happenned to be wearing a Bug’s Bunny tie…I guess you know what i said ..What’s up doc??
The Paramedic behind me was 2x’s larger than my husband He said I was going to the hospital. They put me in the ambulance. Allen asked my husband if he wanted to come . He said he would follow. When they closed the door Allen said if you feel anytjhing hit my knee. 10 seconds later I hit his knee as hard as I could. I felt an elephant!! If you want me to tell you what death is ask me. I died for 5 seconds. plus I was clinically dead at the doctor’s office. My potassium level was7 normal is 4.2 to 5. If anyone has seen Austin Powers drinking poop quadruaple it I attempted to drink it. Started vomiting it. A Doctor was walking by…USE ANOTHER ORAFACE!!!! The butt. I was drowning. Needless to say , my children were screwed up again.. I called the oldest Brandon ,the youngest Nathan and a very nice gentleman if i wasn’t married I would marry him…SHAROn 14, MEGAN 11 and ALLEN!! I now take fludocrt and hydrocortisone @ 4:00 P.M. everydyt. If I miss two consecutive days I will die.
I am also Bi polar I feel their is a correlation with Cushing’s disease. I take Depacote etc. 12 more pills plus hydrocortosone in the morning too! I Have 2 books at home Manic Depressive Disorder. By Fredrick Goodwin and Jay Jamison. Worth reading. Stated Cushing:s disease is derived and assossiated with bipolar. I believe I have been bi polar from birth. Only episodes I had as a child…TRAUMA!!!!! I now have addison’s disease too! What else could go wrong?
By the way, I have a theory bipolar is assosiated chromosome 13. I also think cancer is a virus. Hit or miss. Cushing’s is fatal i not treated properly. Adrenalectomies are the worst . Take Vicatin .I threw it at my husband I did not want to get addicted to it like House. I used ice 24/7. I won’t go into the detatails it was bad. If you do get one , move I used a swifter, and a cane. No wheel chair or death for me!! I’m a fighter!!
Thank you for allowing me me to tell my story. I want to write a book about my experiences. I hope there is a publisher out there so I can get my Life story across!!
Sincerely,,
Linda
April 25, 2026
MaryO
Adrenal, Hashimoto's, Other Diagnosis, Thyroid, Undiagnosed
24-hour urinary free cortisol, adrenal adenoma, Blood pressure, bruising, cardiologist, cholesterol, cortisol, Dr. Theodore Friedman, endocrinologist, fatigue, flank pain, flushing skin, food intolerance, glucose, Glucose Tolerance Test, groin, Hashimoto's, hip, kidney stones, low grade fever, low oxygen, muscle weakness, nephrologist, osteopenia, pain, pallor, pre-diabetes, Primary Care, stomach, surgery, tachycardia, thyroid, tired, tremor, urologist
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!
HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio
March 8, 2026
MaryO
Cyclic, Hashimoto's, Other Diagnosis, Pituitary, Pituitary Surgery, Success Stories, Thyroid, Treatments
Adrenal, cortisol, cyclical Cushing's, Cytomel, dexamethasone suppression test, eyes, Golden Oldie, Hashimoto's, heart arrhythmia, MRI, neurosurgeon, pituitary tumor, prolactin, salivary, success, Synthroid, thyroid, transsphenoidal, UFC, urine test
I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.
I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.
They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.
Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.
In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.
I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.
So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!
Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.
Thanks for listening!
HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio
Older Entries
Newer Entries
Recent Comments