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Holly (Zeus218) Steroid-Induced Bio

February 19, 2026

MaryO Adrenal Insufficiency, Hypothyroidism, Other Diagnosis, Steroid-Induced , , , , , , , , Leave a comment

Hi.., I am hoping not to confuse you all with my roller coaster history.

I have exogeneous Cushings which was close to impossible to diagnose.

In the past few years I suffered from the symptoms of cushings, celiac and hyperthyroidism.

Unfortunately all have autoimmune symptoms and I had everything at once. Like most or all of you I was fit and athletic but even as far back as 10 yrs. ago I wondered why I gained weight before or during summer. We are not talking about a lot of lbs. then just ten lbs. I then had to work hard in the summer to get it off.

Six yrs ago I was diagnosed with hypothyroid so that seemed to explain the weight gain but the thyroid medicine made me sick and over time I would test sometimes as hyper then hypothyroid. Sometimes I would test with both at once so I basically went untreated as no one understood it. Three years ago I gained 72 yes 72 lbs in one 3 day weekend while traveling.

My thyroid was out of control and I felt likeI was having a heart attack. I went to a well known hospital to an endo because there were no endos in my area. They figured out what my thyroid problem was and said that the nodules has been skewing the tests. I told them about all of my other symptoms that didn’t make sense and they felt that I had more than one thing going on.

At this time they were testing for high cirtisol but it was actually low. I had significant bruising then, paper thin skin, lack of muscle and all symptoms other than striae. They did a total thyroidectomy and recovery went well. I was not supposedto take thyroid meds until heart palps went away because I was hyperthyroid they said I would have excess thyroid retained in body for a few days. You can imagine how bummed I was when I stillfelt sickly. I went home gained another 52 lbs a month later and became much sicker.

That summer Celiac was diagnosed and all of those immune system symptoms disappeared when I went super strict gluten free. By this time I was eating nothing and was sick all of the time. I was diagnosed with mono (Dr’s were surprised and didn’t believe at first) and basically slept for 4 mos.

I had been getting allergy hayfever injections annually for 29 years but my Dr retired so I went to a family Dr to get the injection. This shot worked well for severe hayfever and was given in another town. The Dr called another allergist who said that I could not have the shot because it caused weight gain and Diabetes. You should have seen my face when I was pointing to my very sicck body! I went home and read the website about the shot and sure enough it causes Cushings. I think I basically slipped through the cracks.

The last two shots were administered by a triage nurse and then the doctor had retired. I always assumed that the endo had seen those injections on my medical records as I had signed a paper having them sent to my medical records before the Dr retired. The medical records from that Dr never transferred.

The scary thing is that I had the shot one month after a thyroidectomy which caused the 52 pound weight gain. The weight gain that I always got in summer was delayed and never showed at the time of the shot. The Dr was a conservative and good Dr and never broke protocol administering the annual shot once annually but you could repeat one half of the shot once a summer which I sometimes did. When he did see me towards the end I told him I was going through a thyroid problem which I was!

The real problems happened when I was refused the shot. I was traveling and when through major steroid withdrawal and had no idea what was happening. I was the sickest at this point and ended up several times in the ER thinking that I was having a heart attack. The cardiologists felt that my symptoms were classic adrenal insufficiency. I would sleep fully clothed thinking I would end up haviing to go by ambulance to the hospital. The hospital (endo) was able to track the retired Allergist down and he called me in October , 5 mos. after I was refused the shot. He said had he still been seeing me he would have definitely tapered me since I had been on steroids for 29 yrs. i had all symptoms but not stiae. The emotional mood swings were gone right away and overnight the 500 lb person that was sitting on my heart when I had AI vanished. The very next day I could walk 7-8 mles after barely walking across the room the day before. My question is withexogeneous Cushingsshouldn’ the weight be coming of nowthat I am 8 mos steroid free?

Had I gained this weight on my own I would know what to do to lose it i.e cut out desserts etc. i have such a restricted and disciplined diet anyway so it makes it hard to do more.

I am exercising daily, just walking, taking Metformin, 1000 mg although I don’ t have Diabetes and taking Vitamin D supplements. Am eating protein and veggies, no sugars. I am taking a low dose of estradial and progesterone due to going off the pill and am 55 yrs. old.

A veterinarian who treats this often in dogs said that they use a reversal drug. Do they have anything to speed up recovery? The steroid injections that I was given were so strong they were taken off a crash cart and have been outlawed in the UK for none lifesaving use. It seems like it will take awhile for me to be less”foggy”.

There has been little info on medicine-induced cushings and it always seems like once you stop it will reverse. I have only lost ten lbs. since June. The Dr.s said I am lucky I was hyperthyroid and celiac at the same time or I could havegotten a lot bigger.

I should have been emaciated without Cushings. Is there such a thing as a steroid therapist? Thanks although I am so grateful to feel better I am left with all the damageand yes looking like a troll. Thanks for listening!

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Mandy, Undiagnosed Bio

February 18, 2026

MaryO Fibromyalgia, Golden Oldies, Other Diagnosis, PCOS, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

golden-oldie

 

Originally from July 19, 2008

AMANDA M JUNE 2008 – INVESTIGATIONS

Hi, This is my document,which I have sent to the doctors, I thought I’d add it as my bio..

FEB 2005 Constipation, Craving for starchy food, Blocked nose right side and change in shape of right side of nose – flattened cartilage.

END OF AUGUST 2005
Large cyst in left side vulva, 2 x two weeks antibiotics wasn’t resolved operation to drain the cyst.

SEPTEMBER 2005
Swelling of stomach after operation, went to doctors thought IBS was given Fibre gel, stomach distended couldn’t go to the toilet for 10 days a lot of pain and a big thick blistering rash at base of spine.

Nurses visited to give enemas wouldn’t work a lot of pain they refused to continue. A&E – X-rayed showed Impacted faeces , given Movicol which worked, told to eat lots of fruit and veg. Did as advised became impacted again.

Ultra sound of ovaries and Stomach – Couldn’t see as fizzing from laxatives.

OCTOBER / NOVEMBER 2005
Doctor referred to Gastro Doctor McStay – Scheduled for Endocopsy – Confirmed Hiatus Hernia

December 2005 / 2006
New Years eve very down and ill with continuous impaction and other symptoms. Friend said to stay at hers and not to stay on my own as it was New Years Eve. Had a few drinks of rum. Early hours of the morning went to bathroom started sweating – collapsed – came to briefly and was on the floor couldn’t control body – friend came in I was having a fit – had cut my mouth and nose. Went A&E new Years day, they said must have been a one off.

January 2006
Sindosopy – Minor inflammation, slow bowel

Follow up Dr. McStay – Advised to take Mil Par for rest of life

February 2006
Symptoms worse very distressed had spoken to PALS previously as felt so ill to wait for appointments and hadn’t been advised what to do next. I had a phone call from a lady at PALS at home she advised me to see A homeopath and said I had Candida from all antibiotics and gave me contact information for a lady to go and see. I Looked up Candida Diet on the internet and started the diet and also went to my doctors at Southchurch Boulevard and asked for an antifungal. He gave me the tablets and I felt really good whilst on them and on the diet but stopped when I didn’t have anymore tablets left.

March 2006
Homeopath (details given to me by PALS) – said I had systemic Candida and low in vitamin’s and took foods out of my diet intolerances and I started being able to go to the toilet a bit better and felt a bit better as month went on. Although always have a swollen stomach, much improved with diet. Also, the ryvita that I was allowed to eat affected my stomach.

Could only eat plain rice, potato, lean meat, Fish. If I ate wrong food I was ill some times I had bad nausea aswell as distension and constipation and other symptoms. If I ate fat I would have nausea and pain in my right back.

I also started getting a lump in my lip which turned into about 10 blisters and the blisters have gone but the lumps is always there and dries out all the time and it sometimes turns into blisters but never goes.

OCTOBER 2006
Homeopath said I should be okay and to introduce foods I did this and became ill. She advised me that I must have an underlying condition, which is why it wont go and said to go back to doctors.

December 2007
I was very low as I thought I was getting better and kept eating foods which made me ill as I was depressed over Christmas. Then I went to a new Doctor at Cluny Square and explained what was happening. He said possibility of Celiac I had blood tests but not biopsy and the diet was pretty much a Celiac diet. The doctor to have me sent back to Gastro and he will try and help me with investigations.

I went back on the diet. I had also applied for a new career at the NHS as a Trainee Radiotherapist previously as I thought I was getting better and I was given the job which started in February 2007.

March 2007
Dr. Mcstay – said I’d been tested for Celiac but not had biopsy agreed to do tests but said I would have to eat for 5 weeks for biopsy as been doing the diet. They said if I had been on the diet that long I may of healed my gut. I was still trying to eat low carb whilst doing the challenge so ate low carb ( I don’t know if maybe I didn’t eat enough in the 5 weeks to do the damage for celiac.

I started the eating gluten also stopped the Birth Control Pill as I felt too ill to go and get my next pack and thought it may help if I had a break. I had previously been off the pill a few years back and didn’t have a period for 1.5 years and just went back on it.

I was signed off work as too ill for the whole 5 weeks. My symptoms were much worse this time during the eating for the test. Also doctor said my thyroid was a bit low.

APRIL / MAY 2007
I returned to work had been back on my diet for a week – My results came through and it tested negative for celiac. I was very stressed as I still didn’t know what was wrong.

I spoke to a dietitn at work and she agreed to try and help – she put me on a anti yeast diet (still eating wheat etc )and said to ask for antifungal from doctor but doctor couldn’t give me a very long course it didn’t make much difference. She then advised me to eat normally maybe I was malnourished from diet and I just got worse and worse and my skin had started changing like it was dehydrated, shrivelled up like crepe paper and thin. I was eating chocolate as was down and was very nauseous after but felt like giving up as was so ill so kept eating wrong foods .

JUNE 2007
I was very ill eating foods that made me ill. Still off the pill. There had been stress at my family my Dad had left. I left work early as stomach hurt and was very nauseous went home and decided to try a antidepressant 20 mg Prozac on the Friday. There was a big row with Parents on the Saturday, I wasn’t really with it as on the tablets. On the Sunday night I woke up with a very bad headache like pressure in my head and nose I felt very strange I don’t know what happened but I wasn’t with it at all.

My face, neck, arm, back of hamstring around my bottom on the right side had changed. I had bad dioreah for a good week may be it was the shock – I lost quite a few pounds very fast as everything went straight through me. My skin Pale, clammy.

On the Monday I saw Dr. Palacian who advised me to stop the tablets I may have had a reaction (HE SAID I COULD STILL BE CELIAC). I became a lot more anxious and depressed following this as I was scared of what had happened and my family were caught up in there problems and didn’t realise what was going on. I couldn’t stand being at home as was getting panic attacks as it happened in my house so I stayed with my Nan. She was very shocked as I was so thin, I had a black mark down my right side of face a rash also on my face which she has a photo of .

JULY 2007
Occupational health referred me to Physiatrist and I explained what had happened. She advised me I didn’t have a mental problem although I was depressed due to what was happening. She advised me to see Endocrine and Dermatology as she said the mark across my face was a sign of autoimmune disease.

I was desperate to get better and back to work so I borrowed money to private to endocrine. I had blood tests and then after was followed up at southend hospital and the specialist said he had spoken to doctor Adey and I was depressed and nothing on the blood tests.

I then requested an Ultra sound as I had read about PCOS and it did show cysts on both ovaries but nothing on the blood tests prior to this.

(Previous doctor) Dr. Adey said I may have lock jaw but no one said anything about my neck or other limb problems.

DR.MARVRA
I decided to pay to go to a Neurologist as I was so desperate and knew Bells Palsy doesn’t affect one side of my body. I did think I had a stroke. Neurologist advised I needed Pituitary MRI, Parathyroid and various other tests. She said my reflexes were absent and told me to stop doing the diet as it may affect the testing but I couldn’t function without this diet. ( I had been eating wheat etc running up to seeing Dr. Marvra)

AUGUST 2007
Nerve Conduction Test – Normal – was on diet

Follow UP SEPTEMBER 2007
Dr. Banister -Neurology

I had to explain again from the start – I had been on the diet again and this time had reflexes. She said probably a bit of bells palsy, didn’t know what was wrong with my neck or limbs on right side. She also to refer me to Charring Cross for Fibromylagia but Doctor Adey wouldn’t refer me. She sent me to a Physio for bells palsy but it didn’t help.

SEPTEMBER 2007
Dermatology – Basildon Hospital I didn’t get to explain anything he quickly examined me and said no cancer and sent me on my way.

OCTOBER 2007
I became very depressed scared suicidal and was admitted to Basildon Hospital for one night and then referred to Taylor Centre. I tried to work with them as I know I am depressed and I am still down but not suicidal now. I was too scared to take antidepressant they wanted me to take as I was previously advised I could have had a reaction to the tablet and didn’t want anything else to happen. I tried the antidepressant Effofor, but it made my anxiety very bad and I was worried about what happened last time so I stopped it.

NOVEMBER 2007
Referred to Gene for PCOS – I was still very emotional as ill, kept eating foods as depressed, and very upset about my face neck and right side as not been diagnosed. I didn’t communicate very well with GYNE because of the state I was in. I asked about Metiformin as I had read this is to do with PCOS but was advised I had to be very fat or want to have a baby. No periods for the last 6 months.

I saw Occupational Health again and was advised to change doctors. I had asked Doctor Adey many times to refer me to chronic fatigue and did receive a letter confirming that he would but he never followed it up. So I decided to change doctors as I was getting worse and was closer to loosing my new job and felt even worse than before.

JANUARY 2008
Dr. Syed agreed to start from scratch and sent me for blood tests which showed high cholesterol. I was much more positive again. I also decided to see a chiropractioner as my neck was hurting all the time cant hold my head up properly and my bottom / leg was flat when I walked and ached with any resistance walking.

Chiropractioner said I had a wry neck, facial drooping, and weakness and said I should have a brain scan and also mentioned Carotid Arteries but he wouldn’t touch me he said something going on may be neurological. He wrote me a letter to take to dr. Syed. It also mentioned having a breast examination as I have implants and the right side has shrunk and aches when I lay on that side.

Dr. Syed referred for all Specialists.

Breast Ultra sound – implant looked fine but change in fat in breast, shrunk on right side and skin droopy.

Neurologist – Referred – back to Dr. Marvra

Dr. Marvra had the letter and it did say I was misdiagnosed with Bells Palsy – I didn’t get to explain anything Dr. Marvra said I don’t need brain scan you have too many symptoms which don’t relate to my department but she said she would send me to a Rheumatologist.

APRIL 2008
I was referred to Dr. Nuduka – Facial Reconstruction Surgeon for Bells Palsy only Specialist in the UK. He said he doesn’t think it was Bells Palsy and mentioned having a EEG but this was not mentioned to Dr. Syed in the letter.

APRIL 2008
Dentist couldn’t perform root canal as couldn’t open my mouth wide enough – x-rayed my jaw and said its in a spasm – sent me to Oral Surgeon

Dr. Sha Oral surgery
He was very nice and asked about my other symptoms. He said it sounds like you have a few things going on, which is why so many symptoms he said he wanted me to have a brain scan and some blood tests.

I was able to tell him every symptom, which I felt stupid telling other consultants. He said I don’t have bells palsy, I have facial, neck and limb weakness and it will get better. He also said I have some TMJ and gave me some 10 mg of Nortipline to help me sleep as my mouth is in shreds from biting gums. He said he will make me a gum shield. He tried to run a tests for (cushings syndrome / possibly food induced) as he said my skin has atrophied and is thin and fragile with bruising along with other relevant symptoms.

Follow up with Dr. Sha – My brain scan showed a cyst in the right side of my sinus in the area of the facial weakness he didn’t think this was the cause of my right sided weakness. Dr. Sha ordered blood tests for Cortisol to investigate Cushing’s Syndrome but the Sythechen test couldn’t be performed as it had to be requested via Endocrine.

Dr. Sha said he needs me to have a second opinion but I must tell the Consultant everything I told him as it was all important.

Rheumatology
This consultant was running an hour late I wasn’t allowed to explain anything. The consultant just said I am a Rheumatologist have you any swollen joints. The consultant couldn’t explain my neck and said about physo but I had tried this and it never has got better. A nurse came in asking about my periods due to results of urine sample but she was told to leave, I never heard anymore about that. I was upset and the reception said its probably as she is running late in her clinic.

Follow Up Oral Surgery
I then had my Follow up in Oral Surgery with a Consultant. My Dad came with me. There was nurses and doctors in and out of the room using the photocopier which was very off putting and I didn’t feel like the consultant had much time as he said to keep it short. He didn’t acknowledge my facial weakness or my neck and he said I am not saying nothing wrong but I don’t know what’s wrong. They didn’t carry out the Cushing Test.

JUNE 2008
I am currently being referred to a specialist in the Parry Romberg Syndrome, which I stumbled across whilst trying to help my self. I wrote to the specialist after contacting the PRS support group. He agreed to see me based on my symptoms and Cathy Rehill at my doctors has organised this referral.

I am struggling with the constant awkward feeling of my neck as it has no strength on the right side, I cant lift anything above my head as it locks into a more rigid spasm and also affects my shoulder.

I am back on the celiac diet as I ant function otherwise due to the many symptoms I get. I am struggling with the diet as I have other intolerances other than the celiac diet, sugar, yeast, dairy, fermented foods. I do have a letter from Mary McStay confirming that you can only have systemic Candida if you have an celiac, or other autoimmune disease and if immune compromised.

I am naturally worried about the diet I am doing as fruit is very important with diet but I then suffer the faecal impaction. I am now also concerned that maybe where I have been on and off the diet it has affected the tests that I have had but I can feel that I am damaging my body further every time I eat the foods that affect me. It is very difficult to stick to such a rigid diet especially when I am struggling to get around some days and have difficulty getting to supermarkets.

I am very upset about the affect this illness has had on my appearance, my skin is so dry dehydrated, loss of skin elasticity, facial drooping, twisted neck, hollow eye, wasting on nose, general loss of muscle tone all over , flattened buttocks, bloating all the time. I am hoping this will improve once I know what’s wrong and when I am treated.

The palms of my hands keep shrivelling up, drying out and going tight and then the skin flakes on and off throughout every day and this is really worrying me also. Along with the pain in the right side of my back. My skin has got so thin that when I rest my elbows on a table for a couple of minutes they really hurt and go bright red and look like I’ve fallen over. I have marks on my arms which are months old from blood tests, spots and cuts that don’t heal.

I also just went back to the ladies clinic for a second biopsy as they found HPV virus last year. They advised me that I still have this infection and normally the body gets rid of it but my immune system must be compromised as its still there. I have got to go back in 6 months for another check up.

When I eat wrong I have also noticed that my body seems to be swollen like I have water retention and my face and eyes are very puffy. I can also feel the weakness / wasting a lot more if I’ve eaten wrong. I have no quality of life, I don’t go anywhere as don’t feel up to it or due to restricted diet and not able to drink alcohol, I cant go to the gym like I did due to the weakness or wasting in my right leg neck and arm. Fatigued and never feel well, I have no libido or sensitivity at all and I still have no period.

My Parents are now being very supportive as they are concerned about my health and recent deterioration, which has given me the strength to try and stay positive that I will get to the bottom of this. I do appreciate the help I have had from doctors and specialists but it is frustrating as I seem to have a complex illness or maybe something rare, which is making this difficult to diagnose. I have been very patient and I have done everything I’ve been advised to do but this has gone on to long and I cant live like this much longer.

Thank you for support and for reading this document. I hope it makes it easier to understand what’s going on and why I am so upset when I visit the doctor.

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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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