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October 28, 2025

MaryO Adrenal, Cyclic, Ectopic, Familial Cushing's, Food-Dependent Cushing's, GIP-Dependent Cushing's, Pituitary, Pseudo-Cushing's, Recurrence, Success Stories, Undiagnosed 128 Comments

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Necessary Silence, Undiagnosed Bio

February 19, 2026

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

question

 

I was researching the term for the corner my spine makes (buffalo hump) because I was chronicling conditions for my Medical Adventures. This lead me into the tumble of discovering Cushing’s symptoms. So many issues began making sense.

Constantly flushed face, hair loss, heavy weight gain, slimmer limbs, rounded face, buffalo hump.

Fear of not being believed by Doctors (fat lady problem) lead me to buy an at-home test for cortisol levels. The result confirmed that something was going on. I took the evidence to my GP and was sent for a blood test and referred to the Endocrinology Clinic. “Oh my goodness. This is going to be so smooth.”

A month later and the Endo people still have not been in touch. Not even a letter!? I know that an appointment will take a while to come around, but I had hoped to be told kinda how long I would have to wait by now. More research in the interim has led me to a personal conclusion that a pituitary tumour (messing with various hormones) is the likely cause. “An MRI please”.

I’ll try to update you but in the meantime more details will be in my Medical Adventures series on https://www.youtube.com/playlist?list=PLD8MiGlEkjl3J718VsBZ3tw9YWfOYSGrv

I’ve read a lot of the bios on these Cushing’s sites. There are many accounts without follow-ups and I hope that those people are still fighting for recognition of what is going on.

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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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GoldenOldie – MaryO/COVID Vaccine 1

February 19, 2026

MaryO Adrenal Insufficiency, Cancer, Golden Oldies, Growth Hormone Deficiency, MaryO, Other Diagnosis, Pituitary, Pituitary Surgery, Success Stories, Treatments , , , , , , , , , , , , , , , , , , 3 Comments

 

Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary.  I had some issues after my first COVID-19 injection (Moderna) but not too bad.  My second injection will be March 15.

January 12, 2021 my Mom’s doctor called and offered her the vaccine but she didn’t want it. She said she didn’t go anywhere.  True but my DH and I do – and she has a friend visit once a month.  I joked to a friend that I could put on a wig and go as her since we have the same first name.

I have been doing the COVID-19 Patient Monitoring System through my doctor’s office since it was first offered.  Just a few boxes of how I’m feeling, if I wore a mask and so on.  I am a strong believer in helping to participate in medical trials, as I mention below.  This one is very easy and takes about a minute out of my day.  Easy-peasy.

I’ve been on the Fairfax Waiting List since January 19, 2021.  As of right now, they are still scheduling people from January 18 – I read somewhere that 41,000-some people registered on the 18th, so it may be a while to get to my date.  They have set up an interesting dashboard to track how things are going  – https://www.fairfaxcounty.gov/health/novel-coronavirus/vaccine/data

I got a link from a friend when CVS opened up clinics in my state – https://www.cvs.com/vaccine/intake/store/covid-screener/covid-qns

I kept the CVS link open and checked it every morning.  Everything was full until Saturday, February 13.  I was able to register at about 5 am.  When I went back about 20 minutes later, everything was gone.

 

CVS sent out an informative email with directions, dates, ics file to easily add to calendar,

On the day of your appointment:

•Please arrive early enough to check in before your scheduled appointment. Arriving late for your appointment may result in an extended wait time.

•Bring your ID and insurance card, voucher or other coverage

•Don’t forget a face covering—wearing it throughout your visit is required

•When you arrive, please check in at the pharmacy area inside the store or follow the signs for the COVID-19 vaccine

CVS tips for vaccine shots:

•Wearing short sleeves makes getting a shot easier and faster

•If you must wear long sleeves, dress in layers with the short sleeves underneath

• Review the patient fact sheet about the specific vaccine you are receiving

What to do if you feel sick or have COVID-19 symptoms:

•Contact your health care provider immediately

•If your provider recommends it, get tested for COVID-19

• Cancel your appointment

•Don’t come to the pharmacy

•Schedule a new appointment when you’re well

After your vaccine:

•Be prepared to stay for 15 to 30 minutes after the COVID-19 vaccination so you can be observed for side effects.

•If you experience side effects from your COVID-19 vaccine dose, you may find some guidance at Coronavirus: Vaccine, Prevention Tips & FAQs

•The CDC has created a way for you to report how you feel after the COVID-19 vaccination through a smartphone-based tool that uses text messaging and web surveys to check in with you. Learn about v-safe and sign up today.

And a short survey, which I took – just add up to 5 stars and write a short paragraph.

Monday, February 15, 2021: When I got to CVS, I found that everything was very well run.

I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.

I was met by someone at door who checked my name – I showed him my phone screen – he showed me where to walk following arrows on floor.  Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).

There were 4 people ahead of me that I could see.  It went very fast.  I was in the little room within less than 10 minutes.

The nurse asked if left arm was ok to use.

She told me to treat the little quarantine form like gold.  Take a picture on my phone, just in case.  Maybe laminate after second shot.  Keep it with passport.

She said that old folks (like me!) didn’t have as many issues after second shot.

The shot was very fast – I never felt it.

The nurse said if I get a headache, take Tylenol only.  I said that was all I could take anyway because I have only one kidney.

I sat in the waiting area for 15 minutes to be sure there were no problems  There were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.

I was glad to see that it was Moderna (MRNA) although I would have taken either.  I have a long-standing issue with the other drug company, unrelated to COVID vaccines.

I posted on FB that I had done my first injection and a friend told me about registering at vsafe.cdc.gov for them to keep track of me after the vaccination.  I signed up for that right away – and I noticed that CVS had also given me that link.

About 12 hours later (3:30 am) I got up to go to the bathroom and noticed that my arm was a little sore. No biggie.

Tuesday, February 16, 2021:  I just got my first dose of Moderna yesterday – sore arm, so far.

The nurse told me yesterday that older people like myself (I’m 72) had fewer side effects since we had been exposed to more things over the years.  I’m not sure how accurate that is but I’ll hold on to that hope until I get my second dose on March 15!

Wednesday, February 17, 2021:  I had weird dreams overnight but I got up about 4:00 am.  I did some work and fell back asleep until 10:15.

We didn’t go to water exercise. I decided at the very last minute, walking out the door. Reaction to Monday shot?  I had a little headache, dizzy, congested, very tired.  I should have taken more cortisone at this time but didn’t remember until 8:30 pm.

I slept more until about 2 pm and had very weird dreams – I don’t know if the dreams are part of it or not but I reported them to the safe.cdc.gov questionnaire.

I cancelled piano lessons for the day.  I wrote to my students:

I am so sorry but I need to cancel today’s lesson.  I had the first COVID vaccination on Monday afternoon.  I was feeling fine yesterday so I assumed that I wasn’t going to have any side effects but they caught up with me today.  It’s just a headache , a bit of congestion and fatigue (I’ve been sleeping all day so far) but I don’t think I would be at my best during XXX’s lesson.

See you next week…

After cancelling lessons, I went back to sleep until time for Pender’s 7 pm Ash Wednesday service.  I was felling cold but I don’t know if it was chills or really a cold.  I started coughing a little.

At night, I remembered I should have up-dosed. I told my DH that night if he ever noticed me like this again, it was the perfect time to tell me to stress dose.  It never occurred to me during the day.

At that point, I realized I hadn’t eaten all day.  I had dinner (I was surprised that I could eat it) at 9:25 and did my growth hormone injection.

I went to bed at 11 p.

Thursday, February 18, 2021: I’m a little more tired than usual but ok.  I spent time napping and working alternated through the day.

Friday, February 19, 2021: Just the normal tiredness.  Hooray!

Info below from https://medshadow.org/covid19-vaccine-side-effects/  I’ve had the bold ones so far after the first injection.

Moderna

Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.

In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.

A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.

Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.

Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.

The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.

A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.

Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.

This page has information about the other brands of vaccine: https://fairfaxcountyemergency.wpcomstaging.com/2021/02/16/what-you-need-to-know-when-you-get-vaccinated-and-after-you-get-vaccinated/

Traci’s Daughter, Undiagnosed Bio

February 18, 2026

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

My 11 year old is currently at NIH, undergoing 2 weeks of diagnostic tests.

Her main symptoms have been stunted growth and weight gain. She doesn’t have some of the other classic symptoms.

She undergoes the IPSS tomorrow, so hopefully we’ll know more then.

 

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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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Chevy Chase’s jaw-dropping ‘SNL 40’ weight gain caused by steroids, poor health – National Celebrity Fitness and Health | Examiner.com

February 17, 2026

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

Actor Chevy Chase’s shocking weight gain at the “SNL” 40th anniversary celebration has fans worried over his health. Chase, who has gained a significant amount of weight since 2013, may be taking steroids to cope with health issues.

Stephen Lovekin, Ilya S. Savenok, Frazer Harrison, Larry Busacca/Getty Images

“I am alarmed at what I saw last night,” plastic surgeon Dr. Ashakan Ghavami told Radar Feb. 16. “I doubt it was just weight gain. His appearance could possibly be due to steroid administration. This can come from autoimmune diseases or certain types of cancer. But it is unlikely purely weight gain.”

Dr. Ghavami, who has not treated Chase, said steroids and certain medications can cause bloating of the kind apparent in Chase’s puffy face. “There seems to be a buffalo hump on the back of Chevy’s neck and it is ‘cushingoid’ on his face,” said Ghavami.

Chevy May Have Cushing Syndrome

Cushing syndrome is a condition associated with prolonged exposure to high levels of the stress hormone cortisol caused by the long-term use of steroid medication. Symptoms of Cushing syndrome include obesity, a rounded face, increased fat around the neck, and fatigue.

Chase, 71, is significantly heavier than he was in 2013, when the 6-foot-4 comedian was lean and trim. Chevy’s dramatic weight gain caused Twitter to explode on Feb. 15 during the “Saturday Night Live” 40th anniversary TV special. As Chase was being interviewed on the “SNL 40” red carpet, fans tweeted their concern.

Read the entire article at Chevy Chase’s jaw-dropping ‘SNL 40’ weight gain caused by steroids, poor health – National Celebrity Fitness and Health | Examiner.com.

Kelly (Kelly Jo), Pituitary Bio

February 17, 2026

MaryO Pituitary, radiation, Recurrence, Treatments , , , , , Leave a comment

pituitary-location

 

My official journey with Cushing’s started in May 2007 when I broke my hip by stumping my toe.  Dr fixed me and sent me on my way.

About two weeks later I developed a PE and was in ICU for 5 days.  It was there that the drs took note of my appearance (I looked very Cushinoid at this time) and that I had broke a hip the way I did.  They sent me to their clinic and the dr there took about 10 minutes of looking at me and asking me questions and told me she thought I had Cushings – which I had never heard of.

So off for test I went and it was confirmed.  At this point I had probably already had Cushings for 10 years but my past dr never once really heard my complaints and just told me I was fat and how easy it is to lose weight.

I had to wait till Feb of 2008 to have my first surgery since I was on blood thinner due to the PE.  We all thought the surgery was a success but three years later back it came.  So another surgery in Jan 2011.  Then again three years go by and it’s back.

This time it was decided that surgery wasn’t an option so we went with Gamma Knife radiation.  I am now in wait mod to see if it that worked and let me tell you it’s no fun.  Not knowing and not going to know for sure for a year or two is really hard.

The meds I’m on (Korlym) really make me sick too.  I’ve sometimes wished I had chosen to have my adrenals removed (which if this doesn’t work I will) and just be done with it all.

Some days are easier than others – some days I just want to say the heck with it all but I know that’s not an option.  I will never be done with it, as none of us will.

I have great family (the best husband every!) and friends that are there for me but let’s be honest they don’t really know and can’t really understand what we are going thru or how we feel.  I say I just want to be normal and me again but honestly I don’t even know what that is.  So for me I enjoy the good days and deal with the rough / bad days knowing that God does have my back thru it all.

Good luck to us all!
Kelly Jo

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Dennis O, Pituitary Bio

February 17, 2026

MaryO Male, Pituitary, Treatments , , , , , , , , , , , Leave a comment

pituitary-gland

 

In February 2013 I was diagnosed with Cushing’s disease.

Over the previous 6 years, I have suffered from a variety of problems including Deep Vein Thrombosis and a Pulmonary Embolism, compressed fracture of the spine, torn achilles (right leg), ruptured achilles (left leg), several ulcers in my left leg and one in my right, hypertension, high cholesterol and atrial fibrillation. Lesser injuries included a number of torn hamstrings and groins. Prior to that, I had no significant medical problems.

I also put on 14kg (30 pound) in weight. Up to 1997, I was a little overweight but very fit, taking part in distance running including a half marathon. My training routine lessened and I put on weight. The injuries I was having limited my ability to train.

My legs become very weak and have that ache that you get from working out – something which I have had to discontinue due to the weakness. Climbing stairs in particular was difficult. I have stenosis of the spine which causes sciatica which is very painful. I have lost strength in my arms as well as my legs.

When I was diagnosed with possible Cushings, I had never heard of the disease and of course got busy on the internet and read about the symptoms, causes and cures. I found myself hoping to have the disease which is bizarre given the seriousness of the condition and the havoc it causes on the body. The fact that it is not only curable but most of the problems are reversible offers me a quality of life that I thought I could never have again. (since then it has become apparent only some of the problems are likely to reverse)

I underwent testing to confirm I had Cushing’s syndrome and the particular form I had (turned out to be Cushing’s disease). I had extremely high levels of cortisol and a combination of the cortisol and dexamethasone used for testing sent me into a manic state. I had turns where I couldn’t speak. These lasted for about a minute and I had many of them.

I went by ambulance to hospital by ambulance and was admitted. I remained in hospital for 9 weeks, the first 5 of which I was in a manic state. I can’t remember much about that but from all reports I was a very difficult patient. The medical staff tried a variety of treatments until they finally found one which worked.

While was happening, I had several MRI scans on my pituitary gland which failed to find the tumour.

Since then I have had the MRI’s repeated on two occasional but to no avail. This is a common problem with the disease because the tumour is very small

My spell in hospital weakened me to the stage where I was in a wheelchair. I took on rehabilitation and am now walking unaided, albeit with a limp. The pace I can walk is slow but gradually improving. All in all my health has improved dramatically.’

My doctors have decided that they could not operate on me due to my poor health and the fact that they could not find the tumour. As a temporary measure I am taking ketoconozole to control my cortisol levels. That is working well and I am being to show signs that the symptoms of Cushing’s are reversing (loss of weight and, moon face going and strength returning).  However, my cortisol levels are at the high end of normal and this appears to be limiting the pace of my recovery.

Ketoconozole is not a drug which should be taken for long periods, and we are hoping that the tumour shows in future scans. An added complication is that the original manufacturer has ceased manufacture and I am reliant on a generic I am importing from India.

I have returned to playing golf generally twice a week. I have been attending a specialised gym which works on strengthening my back. The pain is becoming less frequent and less in intensity.

I do suffer from excessive swelling in my legs, particularly the left leg where I had the DVT. My vascular surgeon operated on this to improve blood flow. He believes that the current swelling is due to poor circulation and has prescribed full length stockings to be worn during waking hours. He also recommends a targeted exercise program to improve the blood flow in my leg.

I have recently started working with a physio and this seems to be helping.

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Brenda B (BeBop), PCOS Bio

February 15, 2026

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

I recently read an article in the NY Times magazine about Cushings, and a light bulb went off. I have an appt with an endocrinologist in March, but I’ve been to a renowned large clinic near my home in the early 1990s and was diagnosed with PCOS yet had no cysts on ovaries. I had abdominal striae, rapid wt gain in belly only, facial hair. They also found I had hypertriglyceridema – 1000+ when fasting. They could not put me on estrogen for the PCOS because of the lipid disorder, which they figured was genetic tho I never had any tests to find out why. So I went on Lopid, went on to grad school, shaved and plucked, wondered when the period would come.

I’m 53 now, got married in the mid 90s and we tried for years to have children, finally got pregnant in late 1998 and had a son in 99. Then I got hit with a terrible insomnia, sweating and anxiety and was treated for post partum depression. I did not feel depressed, just could not sleep despite my 9.9 baby sleeping through the night almost immediately. Didn’t sleep the two nights I was in the hospital after delivery. I stopped breastfeeding at 3 weeks and began a tragi-comedy of errors of regular health/mental health treatment, finally Zoloft did the trick as well as Valerian root instead of Ambien (which never worked for me) for sleep. The toughest point was when I hadn’t slept at all for 3 days. But that is another story. Anyway to make this already bad story worse, at 4 months postpartum, my mom died of stage 4 leiomyosarcoma, which she’d had in 1995 in her leg and it had metasticized to her lungs. She was a tough old bird and I think maybe had Cushings come to think back. (And thinking of my family history there may be something there with genetics, ie., MEN, with a sister with uterine fibroids, and two brothers with neurofibroma on their foreheads that were removed). Anyway, she refused all medical treatment after the leg surgery and elected to only have radiation in the leg area and never went to get checked out after that.

My son is now 14 and I’m apparently in menopause. I’ve had the return of the awful insomnia and the rapid heart rate at night. So I’m  back on Zoloft and valerian root immediately and made this endo appt today after reading about cushings here for two weeks.  My other conditions are hypertriglyceridemia (never determined if primary or secondary) for which I take Lovaza and Niacin and it’s down to about 300-400, which is not good. I tried Pravastatin but makes my muscle aches and constantnback aches worse.

In 2005 I had a terrible loose cough that the renowned clinic diagnosed as GERD after being misdiagnosed as asthma for 2 years by the community clinic. I can’t tolerate steroids as they make me an angry insomniac but took them as prescribed when they thought it was asthma. The big clinic diagnosed that as GERD (aciphex immediately worked on the cough) and I was also found to have NAFL (fatty liver), an enlarged spleen, and stil the high triglycerides.

In 2011 I had an uterine polyp (removed) and endometrial hyperplasia for which I get checked every year because I don’t want to/can’t take the progesterone. I would really prefer a hysterectomy to end that but obgyn is reluctant.

This year I’ve had a number of new symptoms: lactose intolerance, all over tendinitis (phy ther prescribed), incontinence and needing to go alot, leg and feet cramps, horrible back aches (member at the massage place), super fatique and muscle weakness (couldn’t even snap down the buckle on my ski boots last weekend and only lasted a couple of hours on the hill, and I love to ski) and blurred vision, eipscleris and early cataracts. I also have suffered from what is diagnosed as vasomotor rhinitis for YEARS, I keep lotion tissue companies in business. It’s been so bad this winter that I went to the doctor this week and was prescribed a steroid. Then I didn’t sleep last night. Oh and if I drink alcohol I get the same rapid heart beat and insomnia too, to add insult to injury. I still have the facial hair despite oh maybe a dozen laser treatments.

Oh, and since my 20s when this all started I’ve always considered myself “round shouldered” which looks to be a buffalo hump. :0

In reading all these stories I am worried that I’ve had Cushings my *entire* life not unlike some other folks here. I don’t trust doctors all that much becuase I had so a horrible time with “postpartum depression” treatrment. I was so angry after that that I spent several years on the board of a women’s reproductive mental health organization fighting to get the Melanie Stokes Act passed. I am too old and tired to do advocacy again but thanks for doing it and being here. I am reading about all you folk fighting for a diagnosis and I fear that I’ll be in the same boat. God bless you and hugs for all. Hang in there. I have. Sometimes barely.

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Claire (helaana55555), Adrenal Bio

February 15, 2026

MaryO Adrenal, Adrenal Surgery, Treatments , Leave a comment

I am a 32 year old female that recently had (two weeks ago) my left adreanal gland removed

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