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Elizabeth (ToxicNudibranch), PCOS Bio

October 9, 2026

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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Interview Archive: My Journey | Living with Cushing’s Disease

June 4, 2026

MaryO BlogTalkRadio, Interview, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , Leave a comment

It’s hard to say when my exact “journey” began with what we now know is Cushing’s Disease.  Both my Mom and my doctor believe I’ve had this for years, when I started having period problems, migraines and unexplained weight gain in high school.

I can safely say that I started really noticing/documenting this last round of health issues in the spring of 2007.  I can remember my first doctor’s visit regarding the onset of this in spring 2006, but the majority of my health issues really began a year later.  I’d always suffered from migraines, but only around my menstrual periods.  I took birth control to help with that, and it also helped regulate my periods for the majority of my adolescent and young adult life.

In Spring 2007, however, I started experiencing cluster migraines that were debilitating, blinding and just absolutely horrible.  I don’t usually have a primary care physician because I’m, for the most part, a really healthy girl.  But I started seeing a doctor to pinpoint the cause of the migraine headaches.  I had a CT scan which came back negative for any problems.  I tried different abortive medications to treat the migraines when I had them (Imitrex) and also preventive medications (Topamax) but nothing helped.  I’m not a big fan of popping pills and insisted that I find the cause of the migraines, rather than just masking them with an expensive, non-generic daily pill.  I cut back on caffeine, avoided certain trigger foods, changed the lighting in my house and in my office, had my eyes checked and even experimented with different birth control options, since estrogen can be a huge trigger for migraines in women.  Those lifestyle changes helped a little, but I was still having them.

Read more at My Journey | Living with Cushing’s Disease.

interview

Rachel was our guest in an interview on BlogTalk Radio Wednesday, June 3 at 6:00 PM eastern.

The archived interview is available through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.

 

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Debra LF (DebraLF), Undiagnosed Bio

May 31, 2026

MaryO Undiagnosed , , , , , , , , , , , , , , , , , , , , , 2 Comments

Hello, I  am in search of opinions please.

I present with most of the outward physical characteristics: age 57 “weight gain (obese which began about 1991 with a sudden 60 lb increase in 2 months and no explanation, physician had wanted me to go to a Mayo clinic for eval but at the time I could not spare time nor expense…and more recently continuring weight gain, easy bruising, (menses stopped at age 50, but don’t recollect too many probs except migraines), ravenous appetite, occasional trouble sleeping, depression or mood swings, anxiety, fatigue and altered mentation which is trouble concentrating or decreased memory and now diagnosed ADHD.

1-3. Physical abnormalities include new onset obesity, mine is more recent weight gain, primarily in the abdominal,  buffalo hump which presented suddenly a few summers ago but has been brushed off by doctors…, rounding and reddening of the face which began about ten years ago, thin skin, decreased muscle strength, high blood pressure, and excess hair growth on face, have to shave every day, some times twice, have 5 o’clock shadow, but I have already been to a local endocrinologist in Billings, Montana, there are only a couple in this sparsely populated area, and none of the lab tests showed anything particularly abnormal…open to suggestions, thanks so much…

Gina M, Ectopic Bio

May 9, 2026

MaryO Addison's Disease, Adrenal, Adrenal Surgery, Ectopic, Pituitary Surgery, Thyroid, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , 3 Comments

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!

Cynthia (K8sMom2002), Adrenal Bio

May 5, 2026

MaryO Adrenal , , , , , , , , , , , , , , , , , Leave a comment

The adrenal glands sit atop the kidneys.

The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia

I have just been diagnosed with glaucoma, and I possibly have subclinical Cushings … though I am small (4’10”, 99 pounds), I’ve realized that I have put on an average of a half-pound each month since July of 2012, after years of being fairly stable with my weight.

Also for years I’ve had heart palpitations, a life-long intolerance to cold, and orthostatic hypotension and tachycardia, as well as migraines. I had to push my gyn/onc to get a referral to a endocriniolgist — every doctor seems to think that a “benign” adenoma is an okay one that can be left alone.

Have done an adrenal insufficiency test and will be doing the dex test (two 8 am blood draws) this week.

Jessica (JessicaAnn), Undiagnosed Bio

May 4, 2026

MaryO Hypothyroidism, Insulin Resistance, PCOS, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 2 Comments

I’ve been struggling with a lot of health issues for a really long time now, and so far I have been diagnosed with multiple different things only to have the next doctor say the previous one was wrong.  None of them have yet to be able to explain why I am physically in pain over stupidly simple things like doing laundry, cooking, cleaning, etc.

I recently got tested for Cushing’s because my current doctor thought that might be it, and I was certain I did as well based on how much it sounded like me.  However, my 24 hour urine test came back normal.  So now I’m back to where I started, with no answers and losing hope that I’ll ever find out what’s wrong with me.

 

I have previously been diagnosed with the following:

ADHD – 2005

Insulin Resistence – 2005 (later told that was incorrect)

Depression – 2005 (though it started long before then)

Migraines – 2010 (they started when I was in high school, though, so roughly 2001)

Hypothyroidism – 2010 (I was laster told my thyroid looked fine, though I’m on Synthroid)

PCOS – 2011

Fibrocystic Breasts – 2012 (No tests were done, and I’m fairly certain this is incorrect)

Vitamin D Deficiency – 2012

Vitamin B-12 Deficiency – 2012 (probably caused by spironalactone since it apparently causes that)

 

Both the PCOS and Fibrocystic Breasts diagnoses were made without the presence of cysts, though my ovaries are enlarged.

 

My symptoms have included:

 

Headaches

Migraines

Irregular Periods

Severe Menstrual Cramps

Severe Acne

Oily Skin

Heavy Periods

Fatigue

Difficulty falling asleep (I average about 3 hours per night)

Difficulty staying asleep

Weight Gain (started when I was doing 30 minutes of cardio + 30 minutes of weights every day plus watched everything I ate.  I still to crossfit several times a week and watch what I eat)

Hair Growth (upper lip, stomach, neck, chin)

Nipple Discharge

Skin discoloration (neck, under arms, under breasts, elbows, inner thighs)

High Blood Pressure

Fast Heart Rate

Constant Phlegm in my throat (has been there for years and never gets better/only gets worse when I get the flu)

Hoarse by the end of the day/night

Deepened Voice

Difficulty Concentrating

Forgetful

Large Pink Stretch Marks on waist

Lack of period (started about a year ago)

Back pain from doing simple things (has progressively gotten worse/included my hips, neck, and left shoulder)

Nosebleeds for seemingly no reason (most often in the bath tub/shower, sometimes just happens while driving, walking, doing nothing that should cause them)

Depression

Loss of appetite (I usually force myself to eat light meals at work just in case I end up hungry at some stupid time like 4:00 PM)

Nausea (literally almost every day)

Diarrhea (usually after eating)

Often Stressed Out

Irritability

Buffalo Hump

Round face (I actually have pictures of me when I weighed less than in previous ones, but my face was horrible round in the ones where I weighed less)

 

More than anything, I care about getting the back pain, migraines, and sleep issues fixed because that’s what affects my life the most.  One thing I noticed with the exercise is I’ve been able to build muscle in my legs and arms, but there’s been no change to my stomach, and I have dropped no weight/inches off of any of my body (since I know muscle will add pounds).  I have been to numerous doctors, including several Endocrinologists, one internest, a rheumatologist, a breast specialist, and several gynocologists to get things fixed.  All of my symptoms have progressively gotten worse over the years, and I’m just worried with the amount of pain I’m end that I’m one day not even going to be able to walk.  I’m at peace that whatever it is could eventually kill me, but I at least want to know why it’s happening before it does.

 

So far the only lab work I’ve gotten that showed anything was my Vitamin D and B-12 levels were low, and my Testosterone was high.  My doctor said this would not cause the back pain, though.  I just don’t understand how I can have all of these issues at 28 years old to constantly be told there’s nothing wrong with me to cause the back pain.  I have had no trauma that would have caused it (like a wreck or something), so I know this isn’t normal.

 

If anyone has any suggestions on any other tests I can do/possible causes, I would be extremely grateful.

 

Thank you for taking the time to read this.

Roseglass (Roseglass), Adrenal BIo

January 22, 2026

MaryO Adrenal, Diabetes, Other Diagnosis, Pheochromocytoma, Pituitary , , , , , , , , , , , , Leave a comment

adrenal_glands

 

I have been ill for 9 years. I was experiencing severe anxiety/depression, profuse sweating, extreme hypertension, a non-stop migraine, and living in a constant state of fight-or-flight. Seven years ago, a full body CT scan revealed a left adrenal tumour. It has taken until this past year (actually just a few months ago) to finally get a diagnosis of pheochromocytoma from the medical field (no one listens to the patient – I have been telling them about the pheo and that I have Cushings for 7 years! My cousin died from an undiagnosed pheo.) Fortunately, I have wonderful long-term family doctor and more recently a great endo who have given me alpha and beta blockers to keep the symptoms more tolerable while we waited for a confirmed diagnosis.

Besides the above symptoms from the pheo, I have all the typical Cushing’s symptoms, I have also had a stroke, at least one TIA, and a heart attack. My heart has become enlarged and I can hardly breathe. After the heart attack, my weight took a huge jump. I had already become quite large but then I gained 7″ around the middle in 4 weeks. I complained to my doctors that something was terribly wrong but they kept saying I was just eating too much (sound familiar?). I also have a variety of lesions covering a variety of organs.

Due to the diagnosis of pheochromocytoma (via a MIBG), I was sent to a surgeon. The first was an idiot (don’t stand for that – ever – there are decent people out there). Then I was allowed to choose my own team. I found a team in Toronto, at Princess Margaret Hospital, who are knowledgeable and really understand this disease. When they said I had classic Cushing’s, my eyes teared up – finally someone saw it.

I have just had my 1st consultation with them, plus more tests, and am waiting for my 2nd consultation in January when I also expect to meet with the surgeon. It is looking hopeful that I may have my life back. They believe my body will go back to normal: my heart, diabetes reversal, my hair return to normal (more on head, less on chin), pain relieved (I can hardly walk and cannot climb stairs), and other delightful changes …including a normal life span.

I am worried about small lesions developing on my pituitary and right adrenal gland but no one is really looking at those at the moment. I just got word that the left adrenal tumour doubled in size recently so getting this out is the priority. It has been such a long and frustrating process that I won’t feel truly at ease until I have an actual surgery date.

Roseglass

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Amy (Amy), Undiagnosed Bio

January 21, 2026

MaryO Undiagnosed , , , , , , , Leave a comment

undiagnosed2

 

I have been going back and forth on whether to add a bio here because I don’t yet have a diagnosis. Also, it is really difficult to believe in myself sometimes and occasionally I feel relatively good. Some members of my family don’t support or believe me, but my husband is incredibly supportive and has been with me since my symptoms first started. My sister and my dad have both said to me that they don’t think anything is wrong with me and either implied of outright said that I am just depressed. They keep pushing me to continue with school even though I am taking two classes right now and can barely keep up with them at this point. I graduated from college a few years ago in biology and really would like to go on but don’t really feel like it is possible since I was barely able to get the degree in the end due to my energy levels (mental and physical). At this point I am going to L.A. to visit Dr. F next Tuesday so I am hoping that I will be getting a diagnosis and that something good will come out of this.

I think that my symptoms started as a sophomore in high school. I noticed that I was always tired for some reason and couldn’t seem to “wake up” mentally a lot of the time. I also developed cluster migraines that were particularly hideous. This is also when I noticed that I had a buffalo hump below my neck which I assumed was caused from a fall on my head when I was seven years old. The logic here doesn’t really make sense since I only developed neck and shoulder problems and pain in high school with no symptoms beforehand. I had chiropractic care for years for a stretched ligament in my neck that could never seem to heal. At this time I was very thin (5’8” and 140lbs) so there was no reason that I should have had a fatty lump at the base of my neck. I also had stretch marks on my sides at this weight. I have since gained around 90lbs (about 120 if you count some weight lost over the years due to drastic measures) and I am now 25 years old. There are a ton of stretch marks now all over my body from my knees to my elbows.

I really don’t have an explanation for the weight gain since I have never eaten much. Over the years I kept assuming that I was going to start losing weight because I kept making changes that should have led to weight loss. When I talked to anyone about it the problem was always me and what more I could be doing relating to something they randomly read about weight loss. There was always an explanation for why it wasn’t happening and why I needed to just try harder. I have continued to exercise throughout most of my “illness” either intensively (beachbody insanity several times, running daily) or light (walking or yoga). The intense times are unsustainable for me and it is incredibly hard to get dressed or take a shower let alone do intense physical activity. Nevertheless, I try to run or walk a little every day. In my diet I have made considerable changes such as becoming a vegetarian, vegan, going on juice fasts of vegetable juice for weeks, and just severe calorie limitations. Now I just stay under 2000 calories a day. Frequently I don’t eat very much because I don’t have the energy to make anything. Some people on here talked of acquaintances not recognizing them- I have the same thing. I felt ugly on my wedding because of my weight and have noticed that people are not as kind to the heavier me.

Whenever I talked about having low energy and feeling down the answer was to go to a counselor and that I was depressed. Counseling throughout college was to no effect. I honestly don’t think that I am depressed. I feel happy much of the time, but I’m just very tired and foggy and it is incredibly easy to feel down because of this.

My symptoms and the development of new ones have gotten much worse over the years. During college I had to take a semester off and towards the end I felt like there was no way to keep up with my class load even though I pretty much studied all day long. My memory is terrible and any classes that required memorization were impossible. I developed low grade fevers that continued off and on during the day for at least three months. I sought medical treatment and was tested for HIV, lyme, lupus, hypothyroidism, etc., but the cause never became apparent and I think my doctor lost interest in trying to figure out what it was. My doctor said I probably had PCOS because my testosterone was at the high side of normal, and an infectious disease doctor said I was just depressed. I was too tired to fight for myself and I thought maybe the stress and work of school was getting to me and maybe I really was just depressed. I thought that the weight, the brain fog, the aches, and the tiredness would go away once I removed myself from a stressful situation-it didn’t and has since gotten worse.

I just had a cortisol saliva test done that I ordered from ZRT labs and it indicated high cortisol, but it wasn’t that high and was lowered in the evening. I don’t really know what this means since I thought cortisol was supposed to remain high at night if you have Cushing’s, but I guess I will see what the doctor thinks next week. I have so many of the symptoms and I don’t know what else to do if I don’t end up having Cushing’s. Some other symptoms that I have experienced or that are persistent include: eczema on my fingers, round face, fat neck, sore joints (hands, feet, ankles, hips, shoulders, back) and muscles, excessive sweating, high blood pressure readings, becoming more awake at night and having trouble falling asleep, hip, ankle and foot pain, very dry hair and loss, trouble climbing stairs and descending due to weakness, lower back pain and more neck and shoulder pain (my hump is bigger), blood pounding in ears after little activity, blotchy arms and cheeks, acne on my chin, hirstruism, feeling swollen and uncomfortable, body stiffness, spinal cyst, lightheaded, shaky and clumsy, feeling hot (maybe hot flashes), long recovery from colds and chronic sinus infections, long recovery for injuries, arms and legs fall asleep easily, menstruation date fluctuates constantly, trouble giving blood, nausea and stomach problems, anxiety, twice a bump on the side of my cornea that was inflamed and I could visually see and feel, and a few instances where I had abdominal pain so bad that I couldn’t move. As far as easy bruising goes- I never know why I have bruises but I don’t get them often. I do have some other weird things with my skin such as having “sleep” marks from very short term positions that will not go away for a long time. Also, easy breaking of skin… I once used an electric massager on my back and didn’t realize until later that it had literally mauled me. I had horrible red and circular scratches and (now) a large scarred area. Other times I have had scratches so minor that they barely broke the skin, but I still have a scar…

Being sick all the time is a very humbling experience and at times it can be way too humbling to the point where I feel worthless. I hope there is more understanding and love for people experiencing pain on a daily basis since it seems to be much more common every day. It has been really beautiful to see on this forum the support that parents are giving to their children with Cushing’s and support from doctors and other family members. I don’t know if I would have believed I could have this if not for your stories and your personal struggles to get treatment. The more I read (scientific articles and medical information and bios) the more I recognized that what I was feeling all these years was real and could possibly get better. Thank you for reading my story.

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Helena (hummerbird), Steroid-Induced Bio

December 11, 2025

MaryO (SLE) Systemic lupus erythematosus, Fibromyalgia, Other Diagnosis, Steroid-Induced , , , , , , , , , , , , , , , , , , , , Leave a comment

Hi! My name is Helena (hummerbird). I am going to be 60 next week, Nov 16. I have come full circle with this.

I knew I had adrenal problems 12 years ago when I got stuck in the ‘fight or flight reflex’. I paid to have saliva tests done and it showed that I was dumping cortisol into my system early evening with my lowest point being 6am in the morning. I showed my allopathic doctors the tests but none would put any stock into saliva testing and just blew me off (this was 2002).

Some of my first signs were extreme insomnia yet when I did sleep I would still feel extremely fatigued, flushing of the face, neck, chest, and back, weekly migraines and daily headaches which started after I was 45, unexplained weight gain, crazy buzzy internal tremor adrenaline smacking (I could actually taste it!) jitters that would not go away, hypersensory (especially to light and sounds), feeling painfully sunburned even though I had not been out in the sun, pain in my legs going way beyond restless leg syndrome, totally fearful of everything, developing a hump between my shoulders and a host of other symptoms.

I was first diagnosed with fibromyalgia 03, then SLE Lupus 09 (positive ANA but no markers).

We moved to Colorado in 2012 and then back to Oregon 2014 and when I saw my rheumatologist again after 2 1/2 years (Oct 2014), he said it looks like you have Cushings? So at the moment I am suspected to have Cushings. I have been reading up on it and I am totally textbook (including the fact that I could literally step into the profile of the picture of the woman with Cushings).

Not sure if this is drug induced or if the prednisone finally brought out the demon that’s been tormenting me. My rheumie wants me to slowly wean off the prednisone. My dosage was 5mgs per day unless I was flaring (dealing with horrible muscular pain and internal tremors) then I was to do a step down starting at 30mgs back to 5mgs. I probably do a step down every other month.

My internist in Colorado wanted me to get off my Percocet 10/325mgs 4 times a day and try to deal with the pain. For the first time in my life I used MJ edibles to get off the Percocet with only a week of hard withdrawals. I was on the MJ edibles for 3 weeks until I realized I was allergic to it! I now take 2 Tramadol 50mgs 3 times a day to control pain. On the negative side this is not working because I have too much breakthrough pain but on the positive side I have a clearer head (I’m able to focus and read again!).

Over the years my days have gone from one ‘down’ day a week to a whole month of down days. I have lost my quality of life and pretty much my social skills. My venturing now is from my bed to the bathroom, kitchen, and possibly my recliner if I’m not feeling too dizzy.

I have three saints in my life, my husband and my two girlfriends who take care of me. I know that God has a plan for my life and I have faith in knowing that I’m going to feel well again some day. It has been a long and expensive road to travel to get to this point. I am not looking to have Cushings but it is a diagnosis that finally fits completely. I’m looking forward to meeting the support group.

Love you all and thanks for taking the time to read my post.

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Amanda, Undiagnosed Bio

November 24, 2025

MaryO Golden Oldies, Pituitary, pseudotumor cerebri, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , Leave a comment

golden-oldie

 

I have been battling sickness for about a year and half now. It started with my gaining weight pretty rapidly (about 20 lbs. in a month-month and a half). I’ve never been super strict about my eating or exercising but I don’t eat a lot of junk food – don’t buy any chips, soda, cookies, etc.) I also do remain pretty active in the work that I do as an elementary teacher. I’ve never had a problem with my weight before and this particular summer I was teaching 3 sections of dance so I was getting plenty of exercise.  I told my family practioner about the weight gain and he told me that metabolism slows down as you age. Ok. I was 26 when he said this and my metabolism must have went down to 0 for me to gaine so fast! I decided to just be more concious of what I ate and did.

As the months went by, I went on a business trip to Boston. During this trip I was inrcedibly fatigued and felt awful. I thought perhaps I was coming down with something and was put on antibiotics that did nothing to help. In August of 2010 I began to have debilitating headaches. I could not get the headache to go away with any over the counter pain reliever and ended up going to a doctor who diagnosed me with migraines. I tried a few migraine medicines with no luck and had a CT scan that showed nothing abnormal. I was then referred to a neurologist.

I mentioned the weight gain to the neuroogist who thought it was odd that I would gain weight so rapidly, but he pretty much dismissed it as a symptom and said I was getting headaches from overuse of medication. I knew that could not be right, but thought I’d try just taking nothing for a while to see if it helped. It did not. The same neurologist then recommended physical therapy, which helped ease the pain but did not take away the headaches. His final thought was that I was depressed and put me on depression medication.

During this time I was working as a teacher and missing work quite often. I felt awful every day. I continued to gain weight, feel fatigued and weak, have mood swings and began developing stretch marks and acne. I always had wonderful skin and it seemed no matter what cleanser I used, I couldn’t control the breakouts.

I saw another neurologist that was recommended by a parent at my school. She scheduled me for an MRI and a lumbar puncture. My pressure came back a little high during the lumbar puncture and the MRI was fine so she diagnosed me with Pseudo Tumer Cerebri. I took medication for this condition, but ended up with no relief.

I ended up spending a week in the hospital because I couldn’t stand the pain in my head and I was so emotional over the whole experience of not having any answers. They pumped me full of pain medication and migraine drugs. At the end of the week when I still had no answers, I ended up going to see a neurologist that was a headache specialist.

The headache specialist diagnosed me with meningitis. No tests but I got a diagnosis based on my story. She put me on steriods. I began to feel better for a few days. I returned to work and thought I had finally found my answer. Then everything came to a screeching halt and I began to feel awful again. The headache specialist was still convinced it was meningitis and said I was just more susceptible to migraines from the meningitis. I again went through a whole gamot of migraine medications to no avail.

I ended up leaving my job and moving close to my family so I could have support and people to help care for me. I returned to my family doctor who decided to do some blood tests. After running the blood tests, my doctor said that my cortisol level was high and I might have cushings which would explain all my symptoms. I had never heard of Cushings so I began researching it. Once I read the symptoms and others’ stories of how they felt and what they went through I was so sure that here FINALLY was my answer. The doctor did a low dose dexamethasone test which came back with normal levels and it was decided I did not have Cushings.

I was devestated. Not that I wanted to have this illness, I just wanted an answer and thought for sure this was it! I even asked my doctor to retest me which she would not do.

I went to see another doctor. I began going through migraine medications again, acupunture, chiropractor, etc. to find some relief. I finally brought the idea of Cushings to this doctor. She ran some blood tests again. Everything came back with normal levels except my potassium was low. Even though my blood didn’t show it, I’m still convinced I have Cushings and my doctor agreed to send me to an endocrinologist.

I have an appointment on Monday with Dr. Findling in Menomenee Falls. I found him on this site as one of the ‘helpful doctors’. I’m hoping that he can finally diagnose me and I can get on the road to recovery.

I miss my life. I’ve lost friends due to this illness. My marriage is suffering. I cannot work. I basically have no life at all because I rarely feel well enough to do anything and no one understands. Not to mention the psychological toll being sick with no answers has on a person as well as watching my body change so much and not being able to do anything to control it! I want an answer and I want to finally know what I can do to help myself get better.

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