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Michelle M, Pituitary Bio

November 26, 2025

MaryO PCOS, Pituitary, Pituitary Surgery, Recurrence, Treatments , , , 1 Comment

 

I was diagnosed with Cushings on 2020.

An MRI showed a hormone secretion on my pituitary gland. It was removed in June of 2020.

Things went well and I resumed life as normal.

Well a followup last month with blood work showed a possibility of reoccurence.  I will be getting an MRI next week to confirm.

I don’t have “typical” symptoms but mine presents more like PCOS. My endocrinologist previously was convinced that’s what I had. Then an act of God changed her mind to order an MRI. Had she not I was perscr9bed metformin and told to follow up in six months.

I’ve never talked with anyone with Cushing and was excited when I found this site. Look forward to getting and giving support with fellow Cushings survivors.

 

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Elizabeth (ToxicNudibranch), PCOS Bio

October 9, 2025

MaryO Cyclic, Other Diagnosis, PCOS, Thyroid, Undiagnosed , , , , , , , , , , , , , , , , Leave a comment

This has been a difficult road to even get to a tentative diagnosis, and I know it’s going to be even more difficult going forward, but it’s better than nothing, eh?

I was a pretty healthy kid. I didn’t eat that well, I wasn’t that active, but I was always strong and fairly lean. When I was 19 that all changed. I’m 27 now, and have just barely found an Endo who was willing to order the obvious tests for my obvious signs. It’s been frustrating. To wit:

*2006 I move to the dorms and put on what I assume are the Freshman 25 within the first semester, even though I’m much more active and eating markedly more healthfully than I was ever raised to. 190lbs
*2007-2008 Job prospects are not great, so I’m dead broke. I end up leaving college for the time being. I’m walking everywhere since I can’t afford a car and public transport is not adequate, and eating less than I should. Weight stabilizes at 195lbs
*2009-2012 I’m not eating much more, just better (lean meats and leafy veg instead of rice and beans for every damn meal!), but my weight starts piling on again (30 in 2 months). I begin experiencing migraines, marked fatigue, and anxiety. Fat settles entirely around middle. Face still relatively normal. Continue moderate gains thru weight watchers, south beach, Atkins, etc. Bring concern to PCP, where I am accused of mis-stating caloric intake and asked to track food. I do, and on my follow-up appointment, my PCP just looks at me like I’m lying and and offers stimulant diet pills. I decline. Hirsuitism increases, as does fatigue. OBGYN diagnoses PCOS, I start Metformin 500mg/2x No reduction in weight. 220lbs
*9/2012 I put on another 15lb in 4-5 weeks. Face is getting fatter, gut sticks out like a basketball. I know something is very wrong, and by this point I’ve heard something about Cushing’s and thought “Hey, that looks exactly like me.” I go to see my first Endo. He notes that I have the hump, torsal weight gain, hirsuitism, weak limbs, easy bruising, anxiety, etc. Mild striae. I even show him pictures of myself from 6 months ago. The change in my appearance is enormous. He waves those away and runs a single midnight cortisol (inconclusive) and an8am dex test (kinda supressed) and says that I’m just fat because I’m clearly stuffing myself with chocolate cake on the sly and totally lying about the 5-8 miles *a day* that I’m running by this point. He recommends a more restrictive diet or gastric bypass. And did he mention that he just happens to be able to provide me a referral to a good colleague of his that runs a whole surgical center that will throw in some laser hair removal with Lapband? Asshole. I feel degraded and helpless. 235lbs
*10/2012-5/2013 Continued migraines, increasing sinus pressure and constant sinus infections, eyes very irritated. PCP blames allergies and stress. Could be migraines, could be cluster headaches. I take at least 1600mg of Ibuprophen daily. I can’t run anymore because my ankles and knees are hurting pretty badly, but I start swimming again. Continued creeping weight gain despite increased exercise. 240lbs
*6/2013-10/2013 Migraines increase. Mis-diagnosed with multiple sinus infections. (5/28/13, 6/19/13, 7/2/13, 9/10/13, 10/18/13) The sinus pressure and pain never seem to get any better, so I go see an ENT. He says we may have to roto-rooter my sinus cavity to correct the constant inflamation. However, once he reviews my CAT Scan, he says I have only the mildest of swelling in my sinuses. Whatever it is, it’s not my sinuses.
*11/2013-4/2014 I develop double vision, my right eye stops tracking with my left, both eyes are bugging out (exoplthalmos). ER doctor and Opthamologist diagnose it as Thyroid Eye Disease/Graves. I have no symptoms of hyperthyroidism/Graves, (TSH, Thyroid antibodies all negative/normal) but my main concern is regaining sight, and the course of treatment is the same, regardless. First course of Prednisone. Rapid weight gain of roughly 20 over 3 months. I track and weigh my food obsessively, averaging 1400kc/day, which should be resulting in steady weight loss. In addition to smimming, I adjust my commute so I walk instead of drive and am doing body-weight yoga. Strength is a fraction of what it used to be. My striae get worse, as does my torsal fat distribution, hirsuitism, fatigue, hair loss, hump, mental fogging, etc.  I’ve stopped wearing pants and moved entirely to dresses. 260lbs
*5/2014 I’ve been weaned off Prednisone entirely. My eyes look normal again. I’m still eating well, but I feel so badly and I’m so tired that I can’t exercise much anymore. My heart starts pounding from relatively mild activity. I’m not experiencing migraines anymore, but I just plain don’t feel good. My moon face gets even worse. Everything gets even worse, actually. My weight is the same, but I can’t lean my head back because of the buffalo hump and I can’t even properly snuggle with my fiance because I’m feeling choked by the massive beer cozy o’ fat that surrounds my neck.
*6/2014 My eyes are swelling again. Thyroid levels still normal and I don’t have any markers for Graves specific antibodies. We begin 2nd course of Prednisone.
*8/2014 I’m off Prednisone again. I know something is very wrong. I go to another Endo, Dr. Knecht, who actually listens. He reviews my medical history, looks at my clear physical symptoms, and orders a crapload of labs. The results are pretty clear. It’s Cushings. He thinks there’s a good chance it’s cyclical. Now we start in to determine exactly what kind we’re dealing with.  It’s very likely that all the things I’d been suffering from (the PCOS, the pain/pressure that turned into exoplthalmos, anxiety, migraines) have been directly related to this condition. In Dr. Knecht’s office, I cry from relief. When I get home and tell my partner, I cry because I’m kinda scared.

And then I found you guys. And now I’m really scared. Hopeful, still, but terrified. Because the clinical, dispassionate descriptions about the surgeries that may be needed to “cure” (or at least knock into remission) Cushing’s are very different than yearing about the actual day to day experiences of living with a messed up or woefully inadequate adrenal/endocrine system. I’m confident I’ll get through it, but damn. This is going to be really hard.

I will update more as we get more conclusive answers and I begin treatment.

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Valencia, Undiagnosed Bio

September 7, 2025

MaryO Adrenal, Diabetes, Golden Oldies, Other Diagnosis, Undiagnosed , , , , , , , , , , , , , , 1 Comment

A Golden Oldie

Hello.  I was led to this site while searching for information.  I am surprised to find out that so many people have similar stories to my own.

Last summer I went to the ER because of unexplained vomiting.  They said that my liver values were off, and I needed a CT scan.  So I went to my internist and after the scan he called to tell me that they found a tumor on my left adrenal gland.  He told me to stop taking Metformin, and at the time I was taking 850 mg 3 times daily.  I am severely diabetic, have hypertension and am taking 5 blood pressure meds.  I have had a lifetime of weight issues, missed periods for years at a time, have had hair loss on my head, but I shave my chin and mustache every day since I was a teen, and I am constantly tired.  I also am obese, but eat usually once a day now, since my abdomen is so large.  My legs and arms are smaller than the rest of my body, and this has happened over the last 10 years. I have a buffalo hump, and have since I was a teenager.

The last 2 endocrinologists I went to just yelled at me for not eating properly and not monitoring my glucose levels.  One told me that she was glad my daughter is married because I am going to die.  She never checked me for anything.  The crazy part was after the internist called me and said that I would have to have surgery to remove the adenoma, he changed his mind.  All of a sudden, he said I needed to be followed by an endocrinologist, after he knew the two that I had been seeing.  He referred me to a new endo, who immediately said she didn’t think I had Cushing’s syndrome, but she ordered some tests.  I didn’t take them because she was in the process of leaving the practice.  I see a cardiologist who insists that adrenal adenomas are common, and usually don’t require any attention.  UMMM, I am on 14 different medications for diabetes, hypertension, depression, and arthritis in my back.  I think the evidence is present, but the doctors don’t seem to want to deal with my situation.

So, I changed doctors.  I go to a new endocrinologist on 9/2, and I pray this one will listen.  My health is failing, and my quality of life has sufferred because of all of these problems.

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Voices from the Past: Angela Marie (Angela M), Undiagnosed Bio

August 18, 2025

MaryO Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 6 Comments

Growing up I’d always been anywhere from underweight to average with a couple chubby phases in my pre-teens and teens. I actually got into modeling work for nearly 10 years and I found myself having to take time off in 2008..At least I thought it would just be little while. Between anxiety, being fairly active and a high metabolism, I never had trouble losing weight until In 2007 out of nowhere, I found myself rapidly gaining a lot of weight. All together I had gained about 60-70 lbs in well under a year without my diet or lifestyle ever changing and I’d always been a light, picky eater. I went from a usual size 5-7 to 15 or S/M to XL/XXL. I got back into yoga, pilates and even bought a Total Gym. Working out and dieting even I wasn’t losing even so much as water wieght. I was notiing a whole host of new symptoms. From purple stretch marks, gaining weight, my fingers, toes and palms of hands constantly bright red. Weight gain/appearing swollen only in my torso and upper body, to even my features changing. Adema, constantly craving and eating ice. My once heart shaped face was now completely round and full starting from the top of my ears. I appeared more swollen than anything.

My first endo diagnosed me with hypothyroidism. He was the first to suggest Cushings and my first 24 UFC was 4 times higher than normal and the next was slightly above normal. The rest after that were in the normal ranges. Eventually hypothyroidism was ruled out after routine tests came back normal without taking the Synthroid and telling my doctor I was. Once I admitted it, he was so angry I proved him wrong that he dismissed me as a patient.

I was sent to another Endo and a specialist he referred me to. The next endocrinologist ended up being the most arrogant, rude person I’ve ever met and the few appointments I had with him ended up being mostly arguments or me breaking down into full blown panic attacks. The specialist I seen and his fellow who are supposed to be the best in my state initially believed I have Cushings once they went over my symptoms, medical history and photos documenting my physical changes. The specialist and my past endocrinologists even had grand round meetings on my case and still blew me off!

In 2008 I started having fluid/discharge from my right breast and after tons of testing to rule out breast cancer I was sent to surgery to remove the ducts. After this traumatic surgery, I still have fluid and from both breasts now that’s been ongoing for 6 years. Even after expalaining my situation and medical issues, I’m just told to lose weight. I went from completely normal sugar levels to borderline diabetic to “full blown” diabetic within a matter of months at the age of 26. I’ve seen numerous dieticians, nutrition and diabetic classes and no one can figure out why I’m not losing weight doing everything right. I was prescribed Metformin and lost a little over 20 lbs, but it was such a high dose it had to be lowered and I stopped losing any more weight.

Since everything started in 2007 it seems I’m adding more and more symptoms almost monthly to my already too long list with no answers as to why or what is causing them. I’ve done more research than some would consider humanly possible and probably more than some doctors I’ve seen! Reading blogs, forums, bio’s, etc. I can’t believe how many of the same symptoms I have as other patients. Mystery Diagnosis anymore is hard to watch relating so much to the stories I break down crying. The only symptoms I seem to be lacking is the constantly high cortisol, pronounced buffalo hump and thinning skin. Other than that I seem to have every single one, even the rarest or some I’ve never even seen associated. I’ve been offered so many possible diagnosis’, but nothing definitive. Everything from metabolic syndrome and PCOS to auto immune, parathyroid and that’s just your body!

I’ve seen or been pushed off on just about every specialist there is. At least my primary doctor admits there is something serious going on, but it’s over his head. Every single one of my other doctors, PA’s, surgeons or specialists believe I have Cushings, but I need an Endocrinologist to agree.

6 years later I still with labs all over the place, a list of literally 30+ symptoms and health problems because of this mystery disease that’s yet to be diagnosed. My Cortisol tests seem to be back and forth, but mostly showing low. My testosterone, ACTH and Insulin Like Growth Factor are all elevated. My vitamin D and iron are extremely low even with prescription strength vitamins. My white cell count is high enough to be sent to a cancer center to rule out different types of cancer. I was dagnosed with fattly liver disease and no answers as to why. Hair growth on my face and body, acne breakouts worse than I ever had in my teens. Chronic reoccuring skin, bacterial and viral infections.Dark pigmentation under my arms. Excessive sweating to the point my hair is soaked or sweat drips from my face in cool weather or shopping. Severe intolerance to heat. Growths or polyps on different organs without any further testing and more abnormal labs and symptoms than I can keep track of. I’m just at that point where I’m not sure if I give up and let it take me out or just keep searching for that one possible doctor who will listen and order the right tests.

All I know is I’ve lost so much of my life being so sick and disabled. Not working, not even modeling work on the side, no college to work with animals and be a veterinary tech, turning 30 and still not being able to get pregnant, going out and having fun like I should or even recognizing myself in the mirror. Loving swimming and summer, but can’t stand looking at myself or being engaged for over 5 years and pushing off a wedding because I don’t want to walk down the isle like this and look at my wedding photos remembering this time in my life.

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Voices from the Past: Melissa, Undiagnosed Bio

July 22, 2025

MaryO Other Diagnosis, PCOS, Undiagnosed , , , , , , , , , , , , 3 Comments

undiagnosed3

 

Im currently 24. In 2008 I was diagnosed with PCOS because of my very absent periods, an ovary full of cysts and acne. At that moment the gyno only gave me contraceptive pills.

In 2013 another gyno started giving me also metformin 2x500mg. Also because all these years my cholesterol and triglicerides were always high even though I have been vegan and vegetarian for over 7 years.

In 2010 I fractured one ankle and in 2014 I fractured the other ankle and Ive had multiple surgeries to try to fix that. Ive had continuous weight gain all these years even though I watch my diet and I exercise all the time.

I recently asked my GP to test for cortisol, also because now I’ve been almost a year without any libido. It turned out that my AM cortisol was high, and she repeated it a month later and it came out even higher. Now she referred me to an endocrinologist.

I have the appointment with the endocrinologist in three weeks. Im very nervous about this appointment, and I really just want to figure out what is wrong with my body. Wish me luck 🙂

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Voices from the Past: Britney (PandaBearHobbit), Undiagnosed Bio

July 19, 2025

MaryO Other Diagnosis, PCOS, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , 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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Voices From the Past: Nicole, Undiagnosed Bio

July 13, 2025

MaryO Hashimoto's, Other Diagnosis, Thyroid, Undiagnosed , , , , , , , , , , , , , , , , , , , , , 7 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I just want my life back.

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Archived Interview: Kathy C, Pituitary Patient

May 8, 2019

MaryO Interview, Pituitary , , , , , , , , , , , , , , , , , , , , , Leave a comment

Kathy was diagnosed with a pituitary tumor in 1991.

At the time the only symptom she was aware of was a severe headache. She had a transsphenoidal resection followed by radiation therapy for 23 days. They said they could not remove all of the tumor.  She is now on Signifor and Cabergoline.

Read Kathy’s entire bio at http://cushingsbios.com/2014/04/27/interview-may-7-with-kathy-c-pituitary-patient/

Listen to Kathy’s Interview here.

Kathy’s Interview is also on the CushingsHelp Podcast

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Lauren (Iskah), Undiagnosed Bio

September 30, 2015

MaryO Other Diagnosis, PCOS, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

undiagnosed6

 

My name is Lauren. I am currently being tested for Cushing’s Disease. I’ve read that every patient is different, and from what I can see it is completely true.

I am not entirely sure how long ago my story started. I began seeing my family doctor in high school because I was having menstrual issues. At the time my Mom’s biggest concern was that I was having very irregular periods. She had also noticed that I had been growing hair on my face, under my chin and side burns. I was referred to two different specialists – an Endocrinologist and a Gynecologist to try and determine that root cause.

After multiple appointments with both specialists, the Endocrinologist said that I was on the edge of being Hypo(?) Thyrodism (it’s the one that makes you gain weight) and the Gynecologist said that I had PCOS (or PCOD – the name has recently changed, but I prefer to think of it as a Syndrome instead of a disease). I had a large amount of weight gain between grades 10-11, bumps (or cysts) all over my ovaries, facial hair growth and very irregular periods. I disagreed with the diagnosis.

Even at the age of 15 I felt that it was not the right diagnosis. I had friends with PCOS, and every one of them had insanely painful menstruation and small breasts. This may sound silly, but it was honestly the boobs that made me feel like the diagnosis was wrong. I may have small boobs for my family, but I still carry around size D (or DD depending on my weight) breasts. Either way, the voice of a 15 year old does not tend to carry far and I ended up being prescribed Glumetza (Metformin – used in Diabetes patients) and Yaz (Birth Control).

The Glumetza has always made me sick. I can’t eat my favourite foods with out feeling sick, if I can even get it in my mouth. The one thing I’ve always told my family is that it’s like being pregnant 24/7 with no bun in the oven. I’ve been on and off the medication for years now.

About 6 months ago I went in to see my family Nurse (I’ve stopped seeing my family doctor since, as the diagnosis is always “Lose weight”). I had been having chest pains while working out. Now although I say chest pains, it was more like severe pressure in my left shoulder. I would get dizzy and light headed while running with my sister, and on one occasion I threw up (Just bring it up to my sister, and she will start describing the cheesy spagetti coming flying out of my mouth and on to the yard of one our neighbours.. she still will not run that way).

At the point Erin (the amazing family nurse) also mentioned that my blood pressure had been high, not just recently, but for the last year. Furthermore I was hypertensive. I had heard this term before because for the last year my Mother had been going through her own set of genetic heart issues. My Mom had just been diagnosed with Coronary Artery Disease (genetic form of it) and Superventrical Tachycardia (SVT – PSVT specifically). My Mother was also Hypertensive. This was concerning to Erin, as it had already been determined that my Mom’s condition was genetically given to her.

After monitoring my blood pressure for 3 months, with no improvements I was referred to an Internalist who also specialized in Cardiology. He’s great, just for the record. It’s not very often I that I get to speak with a doctor who understands sarcastic humour. Dr. A-R immediately removed me from Mavik (Blood Pressure Pill) as it was actually doing more harm then good. The palpitations that I was having on those pills were beyond intense, and the worst I ever had. They were never long lasting, never lasting more than 20 seconds at absolute most, but I can definitely say that I do not envy my Mom. Dr. A-R diagnosed me with SVT after a 14 day heart monitor. He literally called me the following Monday after I handed the monitor in. He immediately changed my medication from Mavik to a Calcium Channel Blocker. I still have heart episodes but not nearly as many or as bad as when I was on Mavik.

At my 3 month check in last week he said that he was concerned, because he did not believe that the blood pressure and the SVT were actually connected. He believes that I also have Cushing’s Disease. I had some blood work done a few weeks back that showed a very high number for a stress hormone in my blood. Now I am new to this whole thing, and my memory is horrendous, so I honestly do not remember what that hormone is called. I laughed when he said it though, for two reasons. 1. When I was diagnosed with PCOS, I was told that my body didn’t make hormones, hence the thoroughly detested Glumetza. Apparently that’s a different hormone. 2. It’s a stress hormone? Seriously? I am stressed 24/7 between work, home and my constantly changing relationship with the love of my life. I asked him if that would affect the number. As all of you know, it didn’t. At 8am when I had my blood work done, it shouldn’t be that high. He asked that I do a 24 hour Urine test. I waited until this weekend to do it, and I can honestly say that I did not enjoy a single moment of that test.

My Symptoms:

> Weight Gain

> Facial hair

> Irregular Periods

> High Blood Pressure (Hypertension)

> Back Pain (Which I always assumed was from my curved spine – scoliosis)

> I have a little bump on my shoulders, but unless you’re looking for it, you won’t see it.

> High levels of stress hormone.. and waiting on results for Cortisol.

> I recently have been struggling with depression

> Anxiety & Irritability are a constant.

> Acne

I am currently waiting on my urine results.. and I have no idea what to expect. I do not even know how long it will take to get results.

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Tess, Undiagnosed Bio

May 10, 2015

MaryO Diabetes, Other Diagnosis, Undiagnosed , , , , , , , , , , , , , , , , 1 Comment

undiagnosed2

 

Hi. I am looking for any advice I can get. I am 47 year old female. I have been very healthy my whole life. Until about 5 years ago. I tried to have a second child (first was conceived with no problems 6 years earlier) and could not get pregnant so started fertility treatments. Had fertility tests done, blood tests etc. and everything came back fine. Did multiple ivf etc but nothing worked. Had a bunch of natural pregnancies but all ended in miscarriages.

During this time I gained 40 lbs all in one year. I thought it was from the fertility medication or pregnancy weight gain. Could not lose the weight no matter how hard I tried. I have been thin my whole life until now.

Thought I had a sugar issue so begged my dr. to send me for sugar test for 2 years. He would not because he said I have a normal fasting sugar level. I finally went to see an endo on my own. She tested me and said I have full blown diabetes. Again still have a normal fasting blood sugar level. She mentioned cushiness at the time and sent me home with a 24 hour urine test. That came back normal. I take metformin for the diabetes and have lost a little weight but not in the mid section. My arms and legs are getting thinner only.

I went to a new endo recently and she send me home with a saliva test for 4 days. I am in the process of taking this now. She said a 24 hour urine test is not a good test, the saliva is better. I have a bunch of symptoms that won’t seem to go away but don’t know if they could be from diabetes. When I get up in the morning it is very hard to walk. My legs are so stiff and it is painful. I have a really bad pain on the top of my right foot at the base of my second toe. Sometimes the toe actually swells almost like a ring around the toe. I have the buffalo hump. My husband has actually been telling me I have one for a few years, we just thought it was because I gained weight. I also have a full feeling in my head on one side. Almost like there is fluid there. The ear on that side feels clogged all the time. I also get headaches and when I do it is always on that side, above the ear.

I know I should wait for the test but I am so freaked out, so scared it could be a tumor and also afraid if it is not cushiness we then have no answer. I am so sick of complaining and listening to my own story and I feel like a hypochondriac. I also feel like if I have lost some weight maybe it can be something else.

Is there something else that can cause the buffalo hump? I have no stretch marks at all and no redness in the face. My face is also much less round since I lost the weight. No acne, no extra hair growth. As a matter of fact I think I have lost some body hair. I noticed recently I no longer have hair on my arms.

Can someone please let me know what they think?

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