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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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Voices from the Past: Nicola C (Nikkikicks), Undiagnosed Bio

January 9, 2026

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

 

Hi 🙂 my name is Nicola and I’ve been sick since October of 2017.

I kept gaining weight around my face and lower belly despite not eating due to a horrible flu and sinus infection type sickness where I hardly ate for 2 months.

My doctor gave me anti depression meds, sleep apnea tests, hiv test and told me that I was just not active or eating healthy enough. I swore I had pneumonia as I could hardly stay awake and was so so weak. I had a car accident in 7/17 and so I had prednisone and that is when my symptoms started.

I have also been on hydrocortisone trigger point and epidural injections since then and kept feeling worse and worse.

I am trying to cope with constant sinus infections and still juggle work and my family.

I am 40 lbs heavier and I choose between working out, cooking healthy or functioning at work. The cold Colorado weather is like stabbing me with a million tiny  knives.

My family thinks I’m being dramatic and my boyfriend thinks that I can still work out 4-6 days a week as I did before my car accident.

At this point I’m trying not to cry or mourn the loss of my healthy lifestyle- I’m literally fighting for my life.

I’m just going to get my official diagnosis and then do all I can to recover.

God bless everyone and I pray that we get better super fast.

My cushing Dr has been a bit abrasive with me. But I will keep you posted.

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Mary H (Marietta), Adrenal Bio

January 6, 2026

MaryO Adrenal Insufficiency, Adrenal Surgery, Diabetes, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , Leave a comment

In 1976, I was (finally) diagnosed with Cushing’s disease and after the up the nose surgery, which was ineffective, I had bilateral adrenalectomy.

It all started in late 1974, when I started having lots of illnesses and was depressed.  I was crying a lot and going back and forth to my doctor, who treated every illness and gave me anti-depressants.

Then the weight gain started, ( I was 185 at my highest, which was usually 115-120) actually I had been gaining weight, but by now it was rapid and uneven– only my trunk and face.

All through late ’74 and 1975, I was back and forth, even with a dx of pregnant,  (which made evryone happy, as I was married Feb 1974.  But the mental problems continued, I was under psychiatric care and had 2-3 in-patinet stays of about 2 weeks.  Each time, after the observation and evaluation, I was discharged with no dx. I would also fall asleep at the strangest places and times, all very suddenly.
In March of of 1976, I  had what was then called a “nervous breakdown,” so again I was hospitalized.  THAT probably saved my life, as it was my psychiatrist who finally dx Cushing’s and decided on treatment. He later told me that I had him very confused, as each time he thought he had the DSM dx (he knew I was in the mh field), I would change and thus, he could not fit me in any DSM DX.   Then, because of my appearence (moon face, foot-ball player shape, with skinny limbs, losing my hair and all the secondary dx (high blood pressure, insulin diabetes that could not be controlled– up, down, up down, losing hair, on my head but growing on my face and back), he said he remembered something from medical school.

He did a lot of research, ordered a lot of tests and VOILA– I had Cuhing’s disease.  It was very rare and at that time, he said there were no more 300-400 (known) cases in medical history; also, I was the youngest dx at 26, because most cases were in those age at least 50.

I had the nose surgery, very new at the time,  but it didn’t “work,” so I had to have my adrenal grand removed– they were 5x the normal size and producing 25x the normal amount of steroids. I had the surgery in Novemver 1976, which took from 7 am to 5 pm (I have the 2 long scars on my back).  I did not know at the time that there was an 85% chance of surviving that surgery.

Post surgery, all but 3 of my fingernails fell off, my hair was in tight curls (previoulsy straight) and I had cystic acne on my face, neck and back. I started taking cortisone and florinef and was told I had to take  it the rest of my like.  I was under close dr care for about a year, and by April 1977, the weight was gone (I was back to 115) and all secondary symptoms were gone.  I believe that the surgery was a real “cure” for my Cushing’s disease and after, it was/is maybe somewhat like diabetes, in that it is managed and controlled.  There are some things that I have to watch carefully, like a comprommised immune system (increase the prednisone if infection seems likely) and some depression (never hospitalized again).  I have had some adrenal crises, that landed me in the ER, maybe 5-6 over the years (how strange, no doctor ever told me or gave me a prescription for an injection for such occurences).
In 1990-1991, I had what ended up being appendicitis.  After 4x in the ER, I vomited blood and collapsed.  It turned out to be a (dead) grangrenous appendix, which should have been removed the first t ime.  Supposedly, the prednisone that I take “masked” the symptoms and since my blood showed no infection, I was sent home from the ER each time.  I spent 2 weeks in the hospital with 3 strong intravenous antibiotics to remove all the toxins in my body that almost killed me.

In 2000, I was dx with diabetes, which runs in my family, and at  64 years  old, the problems I have now are severe allergies/sinus problems (no one believes that I am sick when this makes me sick) and I seem to always be hotter or much colder than anybody (which the doctor warned me about right after the major surgery).

Also, I started out with cortisone; in 1990, a new doctor in NYC gave me hydrocortisone and I gained 10-20 lbs.  Another doctor quickly put me back on cortisone and said that the hydrocortisone was only for injections when I have adrenal crisis– it is quick actiing.  The cortisone was 25 mg daily and around 1993-94, I started gaining weight.  A new docotr in Chicago, switched it to prednisone 5mg., the equivalent of the 25 mg cortisone.  He said the prednisone did not cause weight gain– he was right.  I also take Florinef, now Fludrocortisone (the generic, Florinef is VERY expensive, as is the generic, but less).  I started out with this at .1 mg  once every other day and sometime in the 90s, the same dr who put me on prednisone, changed the Fl to one x daily.

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Jody (jodiann), Adrenal Bio

January 6, 2026

MaryO Adrenal, Adrenal Surgery, Golden Oldies, Treatments, Undiagnosed , , , , , , , , , , , , , , , 1 Comment

 

Originally posted January 6, 2008

My mother had Cushing’s Syndrome with pheochromocytomas and had a bilateral adrenalectomy in 1968, but developed pneumonia post surgery and died after 3 months in intensive care.

I have thought that I was starting to develop symptoms and was even see in her endo Dr. for years, but I was always told I was being paranoid. Then in the past ten years I have gotten diabetes, the buffalo hump, put on 100 pounds, sore joints, hypertension, low potassium, high cholesterol etc.

I finally got a CT scan due to shortness of breath, and asthma, and they found bilateral multinodular adrenal hyperplasia.

If it’s not Cushing’s Syndrome, then is there something else adrenal wise it could be? It sure seems like Cushing’s to me.

Update December 30, 2007

I was diagnosed with Cushing’s syndrome approx. 3 years ago, after gaining over 100#s, developing diabetes, high blood pressure, fatigue,muscle weakness, moon face,buffalo hump,many tests later,it was discovered that I had bliateral multinodular adrenal hyperplasia,and got the diagnoses finally,,,

my mom died from complications from a bilateral adrenalectomy in 1978,she had Cushing’s syndrome with pheochromocytomas,,so I watched her symptoms develope, and had felt sure that I was getting the same things, and finally it was confirmed,just a little difference in the diagnosis,,

however,I am having a terrible time getting any understandin, sympathy, or belief, from my oldest daughter and her husband. They believe,and tell me often, that all I need to do is diet,and exercise,and I would lose this weight,and look like I used to,,it is so depressing,frustrating,and hurtful,,,

the depression you get with the disease just adds to make me feel worse,,I’m taking an antodepressant, but they brought this up again at Christmas,due to me not wanting them to invite people that I hadn’t seen since before the big wt. gain,and appearance changes,,,I ended up crying most of the afternoon,,and it makes me feel like such a baby,,,,

I’m usually pretty good about not needing any body but myself for support,,but this just really has hurt me. I’m thinking of sending them pictures of patients with the disease that I’ve gotten on the internet,,although the son in law said he had done his own research and found that diet and exercise apparently was all that we needed to do,,,don’t know where he found that info from though,,,

Update January 6, 2008

CUSHING’S SYNDROME

I was finally diagnosed in approx. 2004,after I had developed diabetes,htn.,shortness of breath, IBS, high cholestero,major muscle aches,moon face, buffalo hump,and my hands and feet had actually gone up one ring,and shoe size and also had on-going depression, mood swings, anger issues,I could watch myself gain weight.

I joined curves,went every night after work, and still gained weight,,even after exercise for those three months I never did seem to regain any muscle strength or ability,,I still had trouble getting up from chairs,or walking any distance, unless I was pushing a grocery cart, or a stroller,,,I had trouble even carrying my groceries in from the car,i would be so out of breath,,I had to get a disabled parking sticker so I could get into work,,,as I was so out of breath if I parked in the lot across the street it would take me three stops for breath each day to make it in,,,and tired, I was so tired,,my favorite past time was sleeping,,I could sleep any time, and still be tired.

My mom had died from complications from a bilateral adrenalectomy due to Cushing’s Syndrome in 1978, and I had watched all of the changes she and her body had gone through,and felt sure that I had developed the same things, but I couldn’t get anyone to listen to me,,,until a unrelated chain of events lead to me getting a U/S of my chest, and a sugested follow up,which I got on a larger scale which showed something wrong with my adrenal glands, then an MRI of them revealed bilateral multinodular adrenal hyperplasia,,,and finally I got hooked up with a good endocrinologist,,am now getting better follow-up of my diabetes and am on ketaconazole to suppress the cortisol production,,which has helped somewhat,and is stopping the excess cortisol,and no more weight gain,,,but hasn’t gotten rid of any of the symptoms either.

There are a lot of times that I look in the mirror and wonder where I am, or where the real me went to,,I don’t look like the me that I used to be at all,I have gained over 100lbs.in the past 13 years,,,and the fight against the depression, the muscle aches and pain, and fatigue every day or so exhausting,,my Doctor doesn’t want me to get the adrenalectomy due to the loss of all steroids,and how difficult it is to regulate them after the surgery. He also told me that you lose you fight or flight response because you don’t have any natural adrenaline,so your reaction time is not very good,,,,,and I have three grandkids that I drive iwth and take places,and I am a nurse and have to be able to react fast,,,,I also feel that he doesn’t think that I am a good candidate for surgery.

So there it is,,and here am I,,,trying to deal with everyday life, and the lack of any understading or sympathy from some of my family,as they feel that I have gained this weight on my own, and if I just ” took better care of myself,and got some exercise” I would feel and look better,,,,,,,as if any one would do this to themselves,,,,,,:>( ,,,,,,,,,,oh well,you guys understand at least,,,,,,thanks for listening

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Mak M, Pituitary Bio

November 26, 2025

MaryO Pituitary , , , , , , , , , , , , , 1 Comment

 

My name is Makena, I’m a 20 year old in California recently diagnosed with Cushings.

I have been having a really rough couple years with a multitude of symptoms. I have been suffering from severe depression since I was around 14, and have been prescribed an endless amount of antidepressants over the years. None of them have worked for me no matter the dose or brand.

The first symptom to cause me to visit the doctor was an extremely high blood pressure and pulse rate. I could always feel my heart pounding in my ears and felt on edge 24/7. My psychiatrist first told me it was anxiety and put me on anti-anxiety medication. That did not help, which led me to see my primary Dr. since my resting heart rate was around 150bpm. I have been put on blood pressure medication which has helped regulate me but I still feel very on edge.

My blood tests show very low vitamin D, very high testosterone, and very high cortisol. My Dr ordered an MRI on my brain and a CT of abdomen. The CT came back normal, but a 6mm microadenoma was found on my pituitary gland so I was referred to an endocrinologist. After doing a 24hr urine test and a saliva test, the results for that came back normal.

My main concern being: I can only physically feel my cortisol levels rise at night. I’ve had severe insomnia and daytime fatigue but the jittery and anxious feeling comes at night and then I crash during the day. I have had severe weight gain in my stomach and face as well as purple stretch marks all over. Losing hair, light sensitivity, vision loss, muscle and bone weakness, easily bruising, a stomach ulcer, a buffalo hump, and constant fatigue have ruined my life. I feel like my body is deteriorating and am not the same person I once was.

I’m hoping I will be able to get surgery to remove the tumor but am concerned that I won’t be approved for it because some tests came back normal. I am not sure what my next step will be but am happy to find stories I can relate to here on this website.

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Melissa F, Pituitary Bio

November 26, 2025

MaryO BlogTalkRadio, Golden Oldies, Interview, MaryO, Pituitary, Pituitary Surgery, Success Stories, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

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Melissa F was interviewed on BlogTalk Radio November 3, 2010. She has had pituitary surgery. Archives are available on BlogTalk Radio and on iTunes podcasts.

From the Clutches of Cushing’s

A journey through Hell… with a happy ending
by Melissa Fine

The most insidious aspect of Cushing’s Disease is, while it is attacking you physically, it is destroying your self-esteem, your peace of mind, your very spirit. That more doctors, psychologists, psychiatrists, drug, alcohol and weight-loss counselors (and the list goes on) don’t know how to recognize something that, in retrospect, seems so blatantly obvious is appalling—and not only tragic, it is, in my opinion, criminal. I often wonder how many Cushing’s victims we lose to suicide because they were not able to get a diagnosis before they lost the will to live… simply because no one thought to look for the definitive answer in their blood, urine or saliva. I am certain that Cushing’s isn’t nearly as rare as the doctors believe it is. What is rare is their ability to recognize it.

This is my story…

First, you need to know that I was always a pretty happy girl (though PMS- related mood swings have always plagued me). I come from a very close family, always had a lot of support, had a group of true friends I could count on, and was always very driven to accomplish my goals. I moved to Las Vegas from Southern California in 1994, right after graduating from UCLA, to move in with the guy who would become my 1st husband (Rat Bastard!). My goal in life was to be a writer, and within a month, I landed a job with a magazine publishing company and was getting paid to do what I love. You should also know I was always way too skinny. No matter what I ate (and I was a picky eater, but what I did like, I ate as much as I wanted of it), I was lucky to keep my weight above 100 pounds. I was happy if I could maintain 105 pounds, so I didn’t look so gaunt…

In 1995, I started noticing something wasn’t right with me. I had every reason to be thrilled with my life, but I was constantly blue. Down. Not tragically depressed—that would come later—but I just never seemed to feel happy. I also found myself complaining of body aches and fatigue all the time. And I kept noticing big, unexplained bruises on my arms, buttocks, and thighs.

In July 1995, I was covering the opening of a new casino/spa in Mesquite, NV. I came out of some exotic acupressure chakra-cleansing massage with one thought: I WANT BEEF! Now, the mere smell of steak would always nauseate me, but I was starving and steak was the only thing on my mind. I ate a 16 oz. New York Strip plus a ½-pound of crab for dinner. Woke up the next morning STARVING and ordered another steak to go with my eggs, hash browns, toast and pancakes, and devoured it all.

That’s when I knew something was really wrong.

Over the next five or so years, I went to many doctors with seemingly vague, unrelated symptoms. I was always famished, so by this time, I was 145 pounds. The depression was also heavier, but at the same time, I felt a constant sense of anticipatory anxiety, like something was about to happen. In less than 10 minutes, a psychiatrist labeled me with “bi-polar 2” and I was thrown on mega- doses of serious anti-depressants and anti-psychotics. I caught every cold, was always bone-tired, constantly in pain, and was finding it more and more difficult to focus on anything. I went on and off various anti-depressants, none of which seemed to work for any length of time. The consensus among the many medical minds was that I needed to diet and exercise.

2000 brought a lot of change—and not the good kind. I found yet another new “family” doctor. This guy, though, actually tried. He noticed, after running a blood panel and looking at my many bruises, that my red blood cells were “abnormal” looking and that my white blood count was up. Up enough that, just to be safe, he wanted me to see a specialist. He told me not to be worried that “oncology” was on the specialist’s wall… he was just really good with blood.

By late August, I was in the oncologist’s office. After looking at more lab results, he promptly scheduled me for a bone-marrow test—which, in his opinion, was just a formality. He told Rat Bastard and me that I definitely had leukemia. My soon-to-be ex-husband asked him flat out: “Is there any chance that this could be something other than leukemia.” The good doctor said, “No. She has leukemia. We just need to find out which kind.”

Bone marrow tests take six weeks to come back. Six days before (and about two weeks from my 30th birthday) the results that would tell me which kind of leukemia I definitely had came back, Rat Bastard decided he “didn’t feel the same way about me anymore” and walked out.

Imagine my surprise when the good oncologist didn’t find the “Philadelphia” chromosome he was expecting to see. Still, he stuck to his guns and was really, really sure I had leukemia. He then took a job at MD Anderson in Houston, TX, but insisted I see his other good oncologist every six weeks or so to keep looking and monitoring my white blood count and my screwy red blood cells. After many months passed and my condition worsened with no explanation, the second good oncologist told me, “You are a ticking time bomb.”

Not helpful.

So, my wonderful boss (who was also a good friend, and, as it turned out, was the guy I was supposed to marry!), paid to send my mom and me to MD Anderson to speak again with the first good oncologist, who was now heading up a leukemia department of his very own. Time for bone-marrow tap Number Two, because he was positive that pesky Philadelphia chromosome was there somewhere.

It wasn’t.

I was back to square one. Only now body parts were starting to break. I fractured my foot by stepping out of bed the wrong way. I tore my meniscus— an injury I was told is usually found in professional tennis players—by doing a single jumping jack in a futile attempt to exercise. A new specialist ran a bone density test that showed I had osteopenia, the precursor to osteoporosis. Another specialist discovered I had insignificant, benign tumors on my adrenal glands—something, he told me, I had in common with approximately 25% of the population. But those revelations were the least of my concerns. The depression turned into an all-consuming black hole. For the next three years, not one day went by that I didn’t sob uncontrollably. I couldn’t do my work, because I couldn’t concentrate long enough to edit a simple story. I couldn’t read a book or even sit through a half-hour sit-com. I no longer recognized myself in the mirror. Even worse, old friends and even my own cousin—people I hadn’t seen in a few years—didn’t recognize me either. They literally walked by me as though I were a stranger. My physical appearance was that dramatically different. I would wake up at 5 a.m., ravenous, and I would FORCE myself to wait until 6 a.m. before I would allow myself about a third of a box of Cheerios with non-fat milk. It was the only time of the entire day that I would actually feel “full.” It only lasted for about two hours, tops… but for that brief window, I found relief from constant hunger pains.

Alone, I no longer knew my own mind. I hid away in my craft room and started endless scrapbooking projects that I never finished. The pretty paper and nifty hole-punches somehow made me smile a little. Like many, I would imagine, I started to self-medicate. Prescribed painkillers.

Thankfully, mercifully, my family bonds were stronger than ever. My parents even moved to Las Vegas to be near me. And that guy, my boss, Glenn… though he met me in my 20s, when I weighed 100 pounds, married me in my 30s, knowing I was truly sick, not knowing what illness I had, and at my heaviest. I was 188 pounds on my wedding day, and he made me feel like a beautiful princess.

At some point around 2003, I had yet another new family doctor. Overall, his diagnostic skills were, at best, questionable. He knew just enough to send me to other specialists. But he was generous with his prescription pad, so I continued to see him. I do, however, owe this particular doctor a huge debt of gratitude. He was the first to mention the word “endocrinologist.” I didn’t know there was such a thing.

Many lab tests later, the endocrinologist told me I had too much of something called “cortisol.” She became annoyed when I asked her what that meant. She faxed her notes back to my family doctor. I noticed she had scrawled the word “Cushing’s” with a question mark after it. I told my doc I didn’t know what

Cushing’s was. His exact words were: “Well, I do know what it is, and you don’t have it.”

The endo disagreed, I guess. She had me scheduled to have my adrenal glands removed. Somehow, 10 days before my surgery, my many questions and stubborn attempts to understand why I was going under the knife really pissed her off. I received a certified letter informing me that, due to my “abusive and indignant attitude,” I was “fired.”

Meanwhile, my mom started Googling. She read the symptoms of Cushing’s Disease as though it were a page from my diary. It was a perfect fit. Except that, according to what she had learned, the lab results weren’t making sense. They were pointing to my pituitary gland, not my adrenals. I cancelled the date with the surgeon and headed back to the family doc’s office. He was quite pleased with himself, claiming he knew it was Cushing’s all along. (He still takes great pride in that epiphany. Why let the facts stand in the way of a good story, right?)

Family doc told me it was great news that my pituitary gland was the culprit: All I would need is a highly focused beam of radiation and some salt pills, and I’d be as good as new. He filled my prescription and sent me to another endocrinologist.

This guy was clever. He actually sent me for an MRI. Unfortunately, the MRI showed nothing. He was, however, in agreement with the previous, previous, previous doctor who told me the adrenal tumors were nothing to worry about. I trusted him, because he dropped the name of a renowned neurosurgeon at USC in Pasadena: Dr. Martin Weiss. I did some research. Dr. Weiss was the real deal—a graduate of Dartmouth and Cornell and a professor of neurological surgery. Finally… an honest-to-goodness expert.

Husband and I packed our bags and were off to Pasadena for a venous sampling. Who knew there was such a test? I found myself in the bizarre position of praying with all my might that I had a brain tumor.

Waiting, waiting, waiting…

Dr. Weiss confirmed that the MRIs did not show the tumor, but he did point to a microscopic something-or-other at the base of my pituitary gland that was tilted ever-so-slightly. He explained that he had, at best, a 50–50 chance of finding the tumor and removing it. He also told me that salt pills weren’t going to do the trick.

In December 2004, Dr. Weiss successfully removed the tumor from my pituitary gland.

This is the part of the story where I’d like to say I dramatically awoke with remarkable bravery and perfect hair to a room filled with calla lilies. Instead, my eyes opened to four or five post-op nurses, I was hooked via a tangle of cords to various machines, my mouth was so dry my tongue was stuck to my palate, and I was frantic to find a toilet. Bedpans just don’t work for me and my bladder was going to explode. After much arguing and cursing, the nurses decided unhooking me was safer than allowing my blood pressure to go any higher. They rolled over a porta-potty, I went forever, and no sooner did they re-hook me than I had to go again.

Learned a new term: diabetes insipidus.

The morning after being released from the hospital (prescription for diabetes insipidus filled and at arm’s length), I remember that, for the first time in nearly a decade, I couldn’t finish my breakfast. I was full.

I’d love to end it with that perfect tagline, but…

Back in Vegas, the brilliant endocrinologist put me on the whopping dose of 20 mgs of hydrocortisone a day. Anxious to “jump start” my adrenals, he quickly lowered the dose to 10 mgs.

After more than a year of seeing a cardiologist for my racing heart; a (mis) diagnosis of panic attacks because it felt like I had an SUV parked on my chest; repeated bouts of nausea and dizzy spells; low blood pressure; increased joint and muscle pain; more depression; and a complete neurological work-up for symptoms too similar to MS for comfort; my incredibly insightful endocrinologist told me to stop coming to his office, go home, and praise God because I was “cured.” In what can only be called a surreal segue, he then added that I should also praise God for my inability to get pregnant, because children are so selfish and self-centered that they only degrade your quality of life. Not surprisingly, he retired from medicine shortly thereafter.

It was at this point that I found the Cushing’s Help and Support boards and verified that I was not, in fact, insane.

One doctor’s name was repeatedly touted: Dr. William Ludlam. He sounded like the savior of all endocrine-challenged souls. I was astounded when he, personally, actually took my call. After listening patiently to my story, he informed me that I was not yet his patient, and therefore, he could not and would not offer me any medical advice or instruction over the telephone. He then told me a story of a hypothetical situation in which certain familiar-sounding symptoms would, to a trained hypothetical specialist, be immediately recognized as the brink of full-blown adrenal failure. I took the hypothetical hint, did some quick online research—and (following only my own hunch, rather than immediately seeing a local doctor as I should have done) took a significantly higher dose of Cortef. Within an hour, I felt human—a feeling I hadn’t known in more than 10 years.

Dr. Ludlam made room in his schedule and, the following week, off we went, at last down the road to recovery.

I celebrated my 40th birthday last month. As 2011 rapidly approaches, I can finally say that my adrenal glands are now functioning on their own. I have not had the need for Cortef in more than a year. I have battled the addiction to pain killers and am emerging as the victor. My size 4 jeans once again fit, and while I still fight depression, it is no longer my primary state of mind. Slowly, I’m regaining energy and enthusiasm. My thoughts are clear, my will is strong, my creativity is restored.

I live.

—–#—–

If you or a loved one is suffering with Cushing’s or Addison’s or you believe you might be, and you need to talk, please feel free to contact me with any questions or simply for an understanding ear. I can be reached at mfine@casinocenter.com (please put “Cushing’s” or “Addison’s” in the subject line) or follow me on Twitter @SinCityTweeter. My thanks and ever-lasting gratitude to MaryO, www.cushings-help.com , and all the fellow Cushies who helped me along the way.

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Amanda, Undiagnosed Bio

November 24, 2025

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

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

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

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

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

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

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

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

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

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

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

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

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

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Ania, Cyclical Pituitary BIo

September 15, 2025

MaryO Cyclic, Ectopic, News Items, Pituitary, Success Stories, Treatments , , , , , , , , , , , , Leave a comment

While other journalists might be on the hunt for a cushy job, Ania Stepien is on a different mission—she’s searching for a Cushing’s job.

Cushing’s disease is a rare condition that can take years to identify. For patients, the path to a diagnosis is often less of a hero’s journey and more like a Christopher Nolan adaptation of a Kafka novel.

After spending her 30s in a quagmire of maddening misdiagnoses, debilitating symptoms, and disastrous side-effects, Ania is now a postgraduate researcher in journalism aiming to change Australia’s healthcare system for the better.

The ups and downs of cortisol levels

The inside of Ania’s head was remarkable even before the pituitary tumour. The child star of 2001’s teen drama Cybergirl, Ania had since gone on to work with traumatised children with a number of international NGOs.

Shortly after returning from a job helping underage asylum seekers in Nauru, she began to fall ill. She gained half of her body weight in just a few weeks, and her face became swollen and pockmarked with sores. She became so foggy-headed she couldn’t keep up with her job.

Concerned that Ania had contracted a mysterious tropical disease, her GP referred her to a dermatologist, a tropical disease specialist, and an immunologist – and then retired.

In reality, Ania was suffering the first symptoms of a tumour in her pituitary gland that was causing an overproduction of cortisol. This hormone is well-know for its role in stress, but also assists in the day-to-day running of organs. Having its fingers in so many of the body’s pies means that when cortisol goes wrong, all sorts of seemingly unrelated effects can happen.

Unfortunately for Ania, all her tests came back normal and the specialists all agreed that she was a perfectly healthy person who had just coincidentally put on a lot of weight and developed unexplained lesions. Her new GP accused her of causing her own wounds and referred her to a psychiatrist.

This experience was repeated when she sought out other GPs and dermatologists. She was prescribed antidepressants and weight loss regimes, and refused further referrals. Her own family began to doubt that her illness had a physical cause.

A vicious cycle

And then, suddenly, Ania got better. The weight fell off, her face healed, and she got a new job.

Cyclical Cushing’s disease is thought to happen when pituitary tumour causing Cushing’s disease changes or haemorrhages, or levels of other regulatory hormones fluctuate. This creates an even bigger challenge for patients and doctors to understand what is happening.

When symptoms returned a few months later, Ania received the same sceptical treatment from GPs. In desperation, she turned to alternative medicine. She went on fasting retreats, accepting blessings from holy figures, and was prescribed hundreds of dollars of herbal tea.

Eventually, Ania found it difficult to walk and breathe. When nurses at the ER thought she was having a panic attack, Ania insisted on seeing a doctor, who discharged her with a letter suggesting she be checked for Cushing’s disease.

Another new GP gave her a 24-hour urine test for cortisol – which came back normal. Unable to get a referral to an endocrinologist but desperate for answers, Ania began to dive into online research, reading medical journals, patient stories, and treatment protocols. She even contacted an animal scientist who specialised in testing farm animals’ hair for cortisol.

Months later, an old family friend in the medical field moved back to Ania’s home town, and Ania convinced them to write a referral.

The impatient patient

At the first appointment, the endocrinologist ordered a dexamethasone suppression test (which measures how easily a person’s cortisol level can be suppressed), 24 urine tests (to measure excreted cortisol over a period of days) and an MRI. The tests read between normal and high – but the MRI revealed a 6mm tumour in her pituitary gland.

However, as pituitary tumours can sometimes be benign and the cortisol tests came back with mixed results, her doctor wanted to continue testing before giving a definite diagnosis.

Over the next few months, Ania deteriorated. She found it difficult to take a shower, let alone work, but Centrelink didn’t accept Cushing’s disease as a disability. She moved back in with her parents.

As cortisol levels are constantly in flux, continually changing according to the time of day and in response to stressful events and other hormones, defining a normal level and an abnormal level is actually quite a difficult task. Because of this, cortisol testing usually involves performing many different kinds tests over a period of days or weeks to figure out longer-term trends.

The monthly cortisol blood tests Ania was doing showed alternately normal and high cortisol levels. She read about a specialist lab in Europe that tested hair for long-term cortisol trends and her endocrinologist agreed to send over a sample – but it was lost in the post.

Having read about more frequent testing protocols overseas, and becoming increasingly frustrated, Ania began photocopying her pathology referrals, testing her cortisol more than monthly, and requesting the results to be sent to her as well as her doctor.

But building up reams of results did not help her endocrinologist make a diagnosis. Instead, she suggested Ania get a second opinion – but feeling this might just be a flex on behalf of the doctor and not wanting to question her authority, Ania refused.

However, experiencing relentless symptoms and after months of fruitless testing, she secured an appointment with Associate Professor Ann McCormack, a specialist in pituitary diseases (and senior staff specialist at Sydney’s St Vincent’s Hospital, head of the Hormones and Cancer Group at the Garvan Institute of Medical Research, chair of the St Vincent’s Campus pituitary multidisciplinary team, founder of the Sydney Pituitary Collaborative Group, co-chair of the Australia and New Zealand Pituitary Alliance, and a board member of the International Pituitary Society.)

Faced with Ania’s folders of results, A/Prof McCormack diagnosed Ania with Cushing’s disease on the spot and immediately booked surgery to remove the pituitary tumour.

The stressful hormone

The surgery was a success – in some ways. While the tumour was successfully removed, her hormones nosedived. Rather than producing too much cortisol, her body refused to produce enough. After five years of constant nausea, fatigue and paralysis, Ania is now just beginning to emerge.

The cortisol expert

Now completing a Master’s of Journalism, Ania’s next mission is to raise awareness about pituitary disorders among doctors and patients, and address social media misinformation about cortisol.

Having suffered from excessive and insufficient hormone levels for almost a decade, Ania knows more than most what an abnormal cortisol level feels like. So when TikTok influencers blame their problems on adrenal fatigue – the idea that constant stress can send adrenal glands into a hyperactive or hypoactive state – Ania has years of research and personal experience to add to the discussion.

Her message for doctors is clear: be aware that you’re a gatekeeper. Start by believing patients, and try to see the bigger picture.

She has similarly strong advice for patients: you are your own best advocate, and the more you know about your own condition the better. A good GP is essential to have on your side, and be wary of alternative medicine practitioners promising to know more than Western medicine. Importantly, superannuation often comes with income protection insurance that can be called upon if government services fail to step up.

From https://www.hormones-australia.org.au/ania-vs-cushings-disease-a-patients-story/

Voices from the Past: Leah (Lele), Undiagnosed Bio

August 22, 2025

MaryO Thyroid, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 4 Comments

I am a 34 year old woman, not yet diagnosed, but suspect Cushing’s.

When I came across this website, it was like other people writing my life story.

I was diagnosed with hypothyroidism 15 years ago, with depression about the same time.  Once on thyroxine, I improved.

About 8 years ago, I started gaining weight, especially around the stomach.  Then as time passed, other symptoms appeared.  The depression was coming back worse than ever, despite increased doses of anti-depressants.  I suffered with extreme fatigue, joint and muscle pain, shortness of breath and rapid heart rate.

I had tests for Rheumatoid Arthritis, Lupus, Fibromyalgia, Latex sensitivity, ECG and echocardigram, stress echocardiogram, chest X-ray, lots of blood tests.  The only thing abnormal was low iron.  I tried iron supplements, which do not agree with my stomach, so had to abandon.

Since then, I have pretty much struggled with further symptoms, the latest being the red stretch marks, the buffalo hump, fat on my shoulders (makes it hard to carry shoulder bags – they just slip off!), red, hot, puffy face, excess sweating, even in cooler weather, night sweats, pins and needles in arms, cramps in legs, high blood pressure, bruise easily, sores slow to heal – and that’s just the physical symptoms.

I am so depressed and low on self-confidence that hardly go out anymore, don’t have many friends, and had to stop working as nurse, which is the job I love.

I finally got my local doctor to send me to an endocrinologist in March this year.  She did an ultrasound of my thyroid (showed a tiny nodule) and ordered a 1mg dex supression test.  When the dex test came back negative and I went back to see her, I just cried my eyes out.  She referred me to see a psychiatrist, and said she was done with me.   The usual – you can’t have Cushing’s, its too rare.  No urine tests, nothing.

I called the Pituitary Foundation in my state who are really helpful, and gave me loads of information. The lady mentioned cyclical Cushing’s.  But they can’t tell you which doctor who can help you, it is different in Australia because you need to be referred by your local doctor, and they have no idea who can diagnose Cushing’s or what tests to order.  So now I have really lost hope of getting a diagnosis, it like fighting everyone all the time, just to be taken seriously.

There are days when I have no fight left in me, and wonder how bad it is going to get, will I get diabetes, heart disease?

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Voices from the Past: Kendra D, Adrenal Bio

July 29, 2025

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

 

My journey to writing this bio started in 2014, 34 years old.  I ended up in an emergency room in Denver while travelling with severe and unknown abdominal pain.  It came on rapidly during a lunch and I was taken to hospital via ambulance from my hotel room.  Luckily, in Denver, you get a CT scan when there is something wrong with you.  The source of the abdominal pain was never determined, however, the attending physician gave me a CD of the CT, letting me know they had observed a small tumor on the left adrenal gland and even though likely benign, I should discuss with my family physician in Canada.

Back home, I did let my family doctor know and they dismissed it.  Over the next year, I struggled with weight gain and depression, since a surgery the year prior to treat WPW (Wolf Parkinson Whyte syndrome).  It’s an extra electrical pathway in the heart that produced rapid heartbeat (SVT), starting in 2011.  3 years and several physicians later, I underwent and electrocardiogram catheter ablation after a trip to the emergency room with a heartbeat of over 200 BPM’s for approx. 5 hours.  Luckily the emerg room physician was also a cardiologist.  He recognized a small irregularity on my ECG.  I was admitted that night and had the procedure done in 5 days.  After that procedure, I noticed a decline in my energy.  Started gaining weight and just didn’t feel like I had.  I chalked it up to the rapid heart rate accounting for all the gusto I used to have not being a medical professional and that being the only real change in my life to date.

I went to see a naturopath to discuss my symptoms and try to find some answers.  I was ‘diagnosed’ with adrenal fatigue syndrome which I’m sure many of you have heard of.  And you also know how much the mainstream medical community thinks of the ‘condition’.  Not much.  But the books I’d read fit my situation and I went down the road of hormone replacement therapy.  Months of hard to find prescription pills and creams that are not covered by insurance became the bain of my existence and I wasn’t seeing measurable improvements.  I became frustrated and started cleansing, diets, supplements, and working out regularly.  Between strict diet control and working out hardcore daily (crossfit, running, weights), I started to feel pretty good.  I also started taking antidepressants, which really pushed my energy levels up, especially in the initial 6 months.  Then they would plateau, so I would try something different.  Same thing over and over.

That was the last 3 years of my life.  Trying a new drug.  A new routine.  A new relationship.  A long yo yo of up’s and down’s.  If I gained weight and felt lousy, I attributed it to the pills not working anymore.  A relationship that wasn’t working.  Stress.  Work.  Being a single parent.  If I changed something up, I could lose the weight.  If I looked good, I felt good.  That was the litmus test – never mind the depression and anxiety that was ever present.

In 2018, I began to put on weight.  I began to suffer from unmanageable anxiety/depression.  I was so tired, I completely stopped going to the gym.  I went to see the doctor about a new antidepressant.  In the clinic, they noticed my blood pressure was unusually high and started to monitor.  I was prescribed a high blood pressure medication as well as a new antidepressant.  The antidepressant was intense.  I started reading up and what I read scared me.  In conjunction with high blood pressure, I started to really consider that I’m possibly doing more harm than good.  Plus, I was not feeling better like I had in the past.

I quit both the antidepressant and the HBP meds.  Started up with the more natural approach – CBD.  Supplements.  Giving myself a break from hard core exercise.  And reading.  Everything.  In 6 months, I had gained approx. 40 lbs and weighed as much as I had the day I gave birth to my son.  My depression was unmanageable.  I was going through a lot of work/relationship stress as well.  I had tried the ‘chill out’ approach and it simply was not working.  I went back to the doctor, who referred me to an endocrinologist.  I remember bawling in her office bc I felt like a failure and a total loser.  Admitting how my weight had spiraled out of control and how I could not manage my mental health and I’d stopped taking my prescription for HBP – I felt crazy.  She looked me in the eyes and promised to do everything she could to figure out what was wrong.  In that moment, I felt like maybe there was something wrong, maybe I wasn’t crazy.  TBD.

So we spent the next year doing all of the tests.  High cortisol being the constant result.  I started back on a HBP med that acts also a diuretic – which at least helped with water weight.  At the end of all the testing, my endo revealed that she suspected cushing’s syndrome and since we knew there was an adrenal tumor from way back, we re scanned and determined it had doubled in size.  Good chance it could be the culprit, especially if increased in size, it’s a good indication that it is active.  She referred me to one of the best endo surgeons in Calgary and let me know that if her diagnosis did not make me a candidate for an adrenalectomy, the surgeon would not perform it.

I’ve spent the last several months not knowing what to expect.  I think many of you can relate to living in a state of being thankful for an answer but still in disbelief.  I still battle in my head with ‘did I cause this’, ‘is this actually what’s making me sick’, ‘what if I remove my adrenal gland and I never feel good again’, ‘what if the tumor isn’t the culprit’.  I have one last CT scan upcoming Aug 7, prior to setting a surgery date and suspect it will fall within a few weeks of the scan.  I’m looking forward to getting it over with one minute and then feeling really scared the next.

I know I can’t live my life in my current state so I have to proceed with whatever solutions are being offered to me.  That rationale promotes a positive mindset.  But it’s one day at a time.  Some days I feel great, some days I can’t get out of bed.  Still living a yo yo life.  My work keeps me pre-occupied and gives me a reason to get out of bed in the morning.  My therapist helps keep me sane.  No antidepressants.  My family has been a great support.  Most people have never heard of Cushing’s so I just stopped telling people. It is isolating.  People assume I’ve gained weight bc people get fat.  And I have to just embrace where I’m at and not let that affect me so negatively.  This is a rare disease.  I’m excited to share more of this journey on the other side.  These bios have given me such peace of mind over the last several months.  Thank you for listening.

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