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Voices from the Past: Crystal T, Undiagnosed Bio

July 11, 2026

MaryO Undiagnosed , , , , , Leave a comment

undiagnosed4

Hi everyone,

I am a 36 year old female who’s been on a two and half years quest for a diagnose. I have all l symptoms of Cushing’s. My Endocrinologist has checked my Adrenal glands, Cortisol, hormones and all normal.

I did have high Norepinephrine levels I don’t understand but rest normal.

I have this crazy acne I believe is excessive Androgen production. Water beads off my skin. My deodorant is extremely hard to wash off because it seems to stay in my pores. My skin is very sticky. Yet I am undiagnosed . 4 doctors from my primary to specialist believe it’s Cushings of some form.

I have a lump on outer Mediastinum area confirmed by my primary doctor and a chest Xray order to get next week. I’ve read a lot about Thymic Carcinoma, Thymoma and other forms of benign to malignant tumors that can cause all my symptoms.

Can anyone help me with advice or share their story please. This is extremely strange and confusing to me.

Update 7/13/16:

I also read about Thymoma and Thymic Carcinoma, certainly lung carcinomas can cause Cushing’s Syndrome. I have all symptoms on Androgen excessive production. Some tumors can be predominately other sex hormone producing.

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Voices from the Past: Lisa (sagrae), Undiagnosed Bio

July 10, 2026

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

Im a mother of 4 use to work full time till I got to sick and very tired.  Not sure what I have been to alot of drs. My tish flucuates my t4 is always in low range of normal, my cortisol tends to be very low in am and through the day. Ive done saliva test blood tests and urine tests. Im either boarderline or below and its been almost 2 years, 2 surgeries and alot of stress and financial hardship to my family. I had sleep apnea surgery first, then my ovaries removed (that proved the pcos i knew i had). Ive now been told I have reactive hypoglycemia. Been put on many different anti depressants to control my moods, since I never know from one minute to the next how I will be.

saliva test   reference range

1.6               7.0-10.0

1.9               3.0-6.0

.9                  2.0-4.0

.9                  <1.5

serum cortisol tested 1 month later

.6                 4.0-22.0

free testo

3                  2-45

 

t4 tested 1 year ago

5.0               4.7-13.3

t4 tested 2 weeks ago

1.11            0.8-1.8

tsh tested 3months ago

1.94            .40-4.50

tsh tested 1 year ago

4.14             .35-4.94

my acth test

20                6-50

lh test

58                10-54.7  keep in mind ive had a total hysterectomy 6 months ago

 

Im wondering how a dr can figure out what is wrong with me if everything flucuates all the time, and im wondering what is wrong with me? please anybody out there please shed some light on what this could be . Theres days i really feel out of my mind. Current medications started 3 months ago lithium 900 welbutrin 150 estradial 1mg provera 5mg

Voices from the Past: Patty L (Answer hungry), Undiagnosed Bio

July 10, 2026

MaryO Hypothyroidism, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

I’m a 33 year old female.  I have 3 young boys ages 8, 5 & 2.

About 1 year ago I started suffering from chronic fatigue to the point of crying halfway thru my work day not knowing how I was going to make it thru the rest of the day.  I went to my primary physician who stated I might need to have my thryroid rechecked.  I was previously diagnosed with hypothryroid but on a real low dose of Levothryroxine.  He ran some blood work and the test came back normal but with deficiencies in my B-12 & Viamin D.  He suggested I try a multivitamin.  I went out and splurged on the best vitamins I could find but they were of no help.

I returned after experiencing palpitations and dizziness.  I was then diagnosed with Vertigo and given meds that only made me more sleepy so I stoped taking them.  I noticed I was gaining weight even though at this time I was running 3 miles 4X/wk and loging in my meals.

My PCP thought I was suffering from depression because I cried at one of my appointments out of frustration because I just waned to make it thru a day without feeling tiered.  He suggested I take a sleep study test to check for insomnia.  The test came back cleared saying other than fallling asleep faster than usual patients nothing else was wrong.

I was referred to a cardiologist becasue I was also feeling extremely cold  and had a difficult time performing the same tasks I was able to do wihtout any problems months earlier.  I kept insisting I had a lot of the syptoms I had previous to start on meds for my hypothyroidism but because the blood work came back normal they said they could not change my meds.

I read somewhere about secondoray hypothyroidsm and requested a referal to an endocronologists.  My PCP felt there was no reason as everything came back normal but I pleaded until he gave in and authorized my referral.

I went to see my endocronologist for the first time and for some reason after telling her what I was experiencing she told me my issues could range from anemia to Multiple Sclerois but she also wanted to check for something extremely rare…..did not give me a name.  She requested blood work and sent me home with 3 cottong swabs she wanted me to saturate between 11 pm – 12 am, stick them in the fridge and return to their lab as soon as I was done.  I did this and she called me stating the tests came back abnormal and she wanted me to do another tests.  She was very vague about providing me with information other than assuring me that what she was testing me for was extremely rare and it was probably false results.  She told me not too panic and just go about life as usual.

I came home with a 24 hour urine collection container and another round of saliva tests.  I got a call from her nurse stating everything was normal.  I insisted I wanted a f/u visit with the Dr.   At the time of my visit she stated she was happy I had insisted on another appointment because the saliva test came back abnormal, but only on one of the swabs.

This time I came prepared with a list of symptoms and my own depression screening test (I’m a social worker and knew my some of my symptoms were similar to those of people suffering from depression), she took copies but again told me not to worry.  Well the more she told me not to worry the more worried I became and started researching Cushing’s the extrme rare disorder she had been telling me not to worry about.

My husband came across a website called Cushing’s with a Moxie, when I started reading the blog I started to cry I felt like finally someone understood me.  I still don’t have an answer by my Endocronologist but in my head I think I’ve figured it out and as silly as it sounds I’m wishing this is it, finally an answer to my symptoms.

~~~

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Voices from the Past: Kim H, Ectopic Bio

July 8, 2026

MaryO Adrenal Surgery, Carcinoid, Ectopic, Golden Oldies, Other Diagnosis, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , Leave a comment

 

I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986. However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

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Voices From the Past: Renee (rmaxwell), Undiagnosed Bio

July 8, 2026

MaryO Golden Oldies, Insulin Resistance, Other Diagnosis, Undiagnosed , , , , , , , , , , , Leave a comment

Originally posted December 5, 2008

My symptoms began when I was about 21 years old. At the time I worked as a Martial Art instructor so I was very physical and in good shape, weighing about 120lbs. Suddenly, and I do mean SUDDENLY, I gained about 60lbs or so. It was as if my clothes fit one night and then didn’t fit in the morning. The weight is mostly in the middle area. My face shape changed and I developed a second chin almost.

I also started getting some whiskers on my chin and neck. Not a lot, just a few, but it was strange.

I was under great stress at the time because I had lost both of my parents in the same year, to two different medical things. So as you can imagine, it was very difficult for me. I developed extreme fatigue, and anxiety attacks. Friends were sure all my physical and mental symptoms must be from depression over losing my folks. One friend advised I see a psychiatrist, so considering everything it sounded reasonable, and I did.

I was placed on Paxil, which caused me to gain even more weight. Since then I’ve tried so many antidepressants I can’t even begin to name them. I went through many SSRI’s, then SNRI’s, then tricyclic, and most recently as a last resort an MAOI.
But in spite of this, over the years my depression has only gotten worse. I’ve had two suicide attempts and been hospitialized a few times. My depression seems to follow a pattern or cycle, two weeks of barely being able to function, followed by a week of doing a little better, then a day or two of feeling good, then back to two weeks of misery, etc. I am not bipolar or anything like that.

I continued to gain weight, developed stretch marks on my belly and arms, got a lot of dark hair all over my belly, and the few whiskers that appeared on my chin and neck have become like a beard. I developed insulin-resistance, high cholesterol, and high blood pressure. I can seldom sleep at night. I experience such deep depression and fatigue that I haven’t been able to keep a job or finish collage, I barely function.

For many years I just thought I had really bad depression and continued trying whatever psych meds I was prescribed. I thought all my physical symptoms were my fault for being so depressed and not getting enough excercise, etc. And most of the time, I was on so much medication I didn’t really care, I was so out of it.

Finally I found a great psychiatrist who truly cares about me and wants to see me happy. After having little or no success treating my depression, fatigue, and panic attacks, she did some research and told me not long ago that she felt I must have something biological going on with me that wasn’t any type of clinical depression. She said she had tried hitting all the different receptors in my brain (seretonin, norephinepherine, dopamine, etc..) and I should have responded to something. She suggested I might have Cushing’s Syndrome. I went online to find out about Cushing’s and I was like “Wow I really match a LOT of these things!”

Now I am on quest for getting tested. It’s difficult as I do not have any health insurance. But I am making a little progress and hope I start to get some answers soon.

I either have Cushing’s syndrome, some other endocrine problem, or the most treatment-resistant depression ever.

That’s my story, thanks for reading. I’m open to any comments or advice.

-Renee

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Voices from the Past: Kali, Undiagnosed Bio

July 7, 2026

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

undiagnosed3

 

Hi Everyone,

My name is Kali, I’m 20 years old and I’ve been on this journey for a year and a half now. Before this all started I was petite 5’3″ and 123lbs at my heaviest, I was incredibly active, I played multiple sports including soccer, ringette and swimming and I worked out 4-6 times a week. I stumbled across this wonderful website last night after becoming so frustrated with the way I have been treated and bounced around from doctor to doctor. Honestly reading some of your stories is like reading my own. I’m hoping someone will be able to reach out and send some advice my way.

This all started last year when I noticed all of a sudden my regular work out routine had become extremely difficult my legs fatigued quickly and my heart started racing just walking. I went to my GP who said I was having panic attacks while walking around. I of course said this wasn’t possible and left discouraged. 3 days later I ended up in the ER due to a racing heart rate at over 180bpm while lying down.

Now fast forward 6 months, 7 rounds of blood work and 5 appointments with 2 cardiologists and everything came back normal. I was fed up. I now couldn’t even walk up a set of stairs without becoming fatigued and working out was no longer in the picture at all. I even found getting out of bed in the morning difficult. The doctors all said it was in my head, it was anxiety, I needed to push through and everything would get better. Funny thing was I used exercise to deal with my anxiety for many years and I knew this wasn’t anxiety.

I honestly ended up no where and sort of gave up. Some doctors thought it was hyperthyroidism, 1 thought Wolff-Parkinsons White but everything came back normal and they all settled on a diagnoses of anxiety and I was prescribed multiple different anti-anxiety and antidepressant medications which my stubborn self refused to take. I accepted that I couldn’t work out or run or be who I used to be and I focused on school and tried yoga, light jogging and small sessions of weight lifting instead of intense gym work outs.

Now we fast forward another 2 months or so. I started craving sugary foods, I had never had a sweet tooth before I never even used to like chocolate and all of a sudden it was all I wanted. I developed a lot of back pain between my shoulder blades and I just assumed this was all because of upcoming exams, bad posture and just life. I really shouldn’t have.

4 more months go by and I went home after school finished. My mom immediately said I had gained weight. I mean I had noticed some of my clothes were tighter but I figure I just accidentally put them in the dryer. 2 weeks later. Nothing fit. I had outgrown all of my clothes in just over a month. When I stepped on the scale I thought it was broken. I had gained over 30 pounds in less than a month. 123 – 156lbs. My face was puffy and red with acne, I had a huge hump between my shoulders. My breasts doubled in size, my stomach was huge but my arms and legs were normal. I immediately went to a new doctor recommended by a friend and she agreed something wasn’t right and sent me straight out for some bloodwork. But of course…. everything came back normal. I even did a dexamethasone suppression test which too came back normal.

I have all the trademark signs of cushings syndrome. Round red face, buffalo hump, bruising easily, unexplained weight gain primarily in the face and abdomen, purple stretch marks on breasts and thighs, muscle weakness, tired all the time, heart palpitations, increased thirst and sweating. But I cannot get a positive diagnoses to save my life. I don’t know what to do. Not 1 doctor has been able to make 2 + 2 = 4 and I’m so upset. I hate looking in the mirror, I hate waking up with 0 energy and no clothes to wear everyday. I’ve seen 3 doctors, 2 cardiologists a nurse practitioner, an endocrinologist who didn’t even give me the time of day with my normal results and I’m scheduled to see an Internist in about a week. Should I just ask him to send me for an MRI? I feel like that is my only option left.

If anyone has any suggestions of what direction I should pursue that would be much appreciated. It’s hard to fight for yourself when you’re the only one on your side.

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Voices from the Past: Rebecca D (RebeccaD), Pituitary Bio

July 7, 2026

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

Hi all!

I am a 24 year old little miss you was diagnosed with Cushing’s Disease in Spring 2010.

I did a ton of tests, including pretosal sinus sampling and MRI’s, and although images and direct location of the tumor were not possible, my doctors were able to confirm a pituitary origin for my cushings.

I had my first transphenoidal surgery in June 2011 and was finally off replacement cortisol by mid november 2011.

In august, as I began to tapper off my medications, I was FINALLY able to loose some weight, loosing 30lbs between August and December.

I stopped losing weight and began another downfall in my stupids between february 2012 until april, at which time my monitoring tests showed my cortisol levels to be again up around the same levels pre-surgery 🙁 so sadly I’m looking again into what my life entails with this Cushing’s having resurfaced 🙁

Voices From the Past: Alex C (Alex C), Undiagnosed Bio

July 7, 2026

MaryO Diabetes, Male, Other Diagnosis, Undiagnosed , , , , , , , , , , 4 Comments

Hi, My name is alex and i honestly have no idea what’s wrong with me.

about 5 years ago i became ill, all of a sudden went from a healthy strong active person, to feeling weak, tired, i gained weight, my hair started thinning, among other symptoms, i was diagnosed with diabetes, my sugars were in the 500’s then one day about 6 months later, my diabetes went away, no change in diet, no change in lifestyle, just up and went away…but it was replaced with excruciating pain, throughout my body mainly in my legs and arms, they said its pribably neuropathy… but i had only been diabetic for 6 months, they tested and found no neuropathy…they said it might be MS, they tested nope not MS….they said it might be fibromyalgia…i don’t have trigger points no not fibromyalgia,,,i started getting infections….gum disease…eye infections… bites and scratches on my legs which used to heal quickly no longer healed and when they did they left scars and marks on my skin….the pain was so unbearable… they tried all the neurological meds, cymbalta, lyrica, etc….. nothing helped…

finally they gave me fentanyl patches and norco and i was able to manage the pain… but still no diagnosis… i saw hemotologists, oncologist, because at one point they thought i had luekemia which i dont… i saw a rheumotologist and nothing…my pain management doctor said i had a bulging disc in my back and wanted to give me steroid injections in my spine…he said that’s whats causing the pain….but the pain was in my legs and arms a bulging disc in my lower spine would cause pain in my legs and lower back only so i disagreed with his assesment…still i got 1 injection and it didnt help… he said oh it could take up to 3 for you to feel relief i refused the injections and he stopped giving me pain meds, he said since i wasn’t cooperating he couldn’t treat me anymore… so i suffered

one day on an emergency room visit i saw a doctor and told him my symptoms… (i would tell any doctor that would listen to try to find something.. i know something is wrong with me) he said have your pcp test your cortisol levels….well my corisol levels were 5 times the normal count.. they did the test twice…and both times they showed 5 times the normal level…now i don’t have the moon face or the buffalo hump but i do have every other symptom of cushings…i went to and endocronologist who right away said… you don’t have cushings…this was over the course of the first 2 years… now 3 years after that and 5 years from the start i’m still suffering the pain i’ve gotten used too for the most part but sometimes it;’s sooo bad i have to go to ER and get morphine and dilauded to help…last week i was in the ER and they gave me 3 shots of IV morphine within two hours and it only lasted about 20 minutes..each time… finally a shot of dilaudid helped and i was able to come home and rest ….. still no difinitive diagnosis other than chronic pain…and my diabetes has come back recently…i no longer see doctors because i have never gotten help from them…i’m lost and don’t know what to do anymore…if it wasn’t for my kids.. i have 3 i don’t think i could go on…invisible illnesses are real and devestating…

 

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Voices from the Past: Lili, Pituitary Post-Op Update

July 5, 2026

MaryO Cancer, Pituitary, Pituitary Surgery, Thyroid, Treatments, Update , , , , , , , , , , , , , , , Leave a comment

 

hi there…

i had the pituitary surgery.  They said i am cured (of course it could come back) but the day after surgery my acth level was 3.7 and the next day it was 1.  They consider that a cure.

it is a very painful recovery for me and i am documenting each day.

The headaches and pressure in my head were so awful and painful but have now on day 6 subsided.  They had to cut my septum to get through and i had a bone spur too so maybe that added to it…my nose was, still is i am sure, packed and i can’t blow my nose till July 12!  The nausea was bad too.  The cortisol withdrawal hasn’t been so horrible yet.  They have me on a taper program of each week taking less.

The tumor was towards the left side and the surgeon who was Dr. Van Gompel at Mayo was aggressive in the amount of tissue he took out as he said it was soft.  He wanted a “home run”.  I asked after if he got the home run and he said yes.

The whole Mayo experience was strange.  You don’t really get to call and speak to the doctor after you see them…you get a “desk” and a message gets sent.  The endocrinologist is the only one who calls back personally but I guess that is a lot.  I would highly recommend her and don’t know all her info except her name is Dr. Irina Bancos at the Mayo clinic.  Things just fell into place there.  As you know I was only scheduled for the IPSS but when she saw how symptomatic I was and all my levels she picked up the phone on a Tuesday and had me scheduled for surgery Friday morning.  A one stop shop.  I was scared and there alone but got through it.

The next 3-12 months will be difficult.  I am currently on some pain meds and muscle relaxers but in touch with my sponsor daily and we decided I don’t have to be a martyr.  I just need to check myself and get off them as soon as I get these headaches under control.

Mary, I’d like to stay active on your site.  I’ve learned so much that helped prepare me for the doctors appointments and the procedures that I’d like to give back anything I can in the way of my experience of living with the symptoms and not knowing what was wrong with me to fighting for a diagnosis to the cure.  Please let me know the best way I can do this and you may post this if you’d like.  Maybe edit out the pain meds and sponsor part as I don’t think many would relate to that but who knows.

I just know I am grateful to you and this site.

Lili

 

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Voices from the Past: Desirae (Desirae805), Undiagnosed Bio

July 5, 2026

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

I am a 24 year old newly graduated registered nurse (dec 2011). Who is currently undergoing testing to confirm or r/o cyclic cushings at UCLA.

I have always struggled with my weight and self esteem and I finally had enough in april when I went to see an endo to see what was going on I mean how could I not be losing weight netting 1100-1200 calories aday and doing spin class and 5k walks! I have done every diet known to man and ws even anorexic for a while.

I had elevated urine test at UFC of 69.7, not high enough to confirm cushing but is very suspect because of my s/s. I have round, face, abd obesity (most people think I am pregnant), stria, hair loss, fatigue, anxiety, tachycardia, muscle cramps (low potassium), buffalo hump, and so on and so on. I am so frustrated I just want to cry all the time, I just want to know what is wrong.

Curently I am to see my doctor in 6 weeks and have 10 24 urines and 12 salivary cortisols to do. I am a nurse and doing a 24 urine at work is hard. I am supposed to get married next year and I want to feel beautiful not sick, not tired, not neck pain, and not heavy.

I am tired of hearing you probably don’t have that it’s rare when obviously something is going on. AND I HATE hearing your YOUNG you can lose weight when ever you want.

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