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Voices from the Past: Meriam S (Jomisa03), Pituitary Bio

October 31, 2026

MaryO Other Diagnosis, Pituitary, Pituitary Surgery, Success Stories, Thyroid, Treatments , , , , , , , , , , , , , , , , 1 Comment

The pituitary gland

The pituitary gland

 

My name is Meriam San Antonio, 52 years old from Fairfield, California. I have been married for 19 years and have three teenage children. I was sick for almost 7 months ( starting March 2013) and the doctors couldn’t figure out what is wrong with me. My symptoms were being bloated, had edema on my feet and legs, swollen all over, had a “moon face”, bruising on my hands, myopathy/neuropathy, aching nerves, bloated stomach (as if I was pregnant), double vision, and lost my ability to walk.

I have been in and out of the ER due to having a congested heart failure, urinary tract infection, colonitis. I suffered from acute depression and tried killing myself. My blood pressure and blood sugar was soaring so high and uncontrolled.

After a series of tests, I was finally diagnosed of having Cushing’s syndrome. A surgery was done on August 2013 to removed my pituitary gland at the left side of my brain.. I had to take an early retirement from work and currently on Social Security Disability.

Two years had past and I have recovered. I lost weight, my blood sugar and blood pressure were now on the normal range. It seems after the surgery, everything was back to normal. I can now walk on my own ( without the help of a cane, walker and wheel chair) but had to undergo a knee replacement as I fell many times on my knees due to nerve weakness. I had a rough time and had gone through a lot.

I stopped taking my PTU medication as told by my doctor as I am already “Cushing’s free”.

But my endocrinologist just informed me that the result of my thyroid test was high. She ordered me to take a “nuclear iodine test” next week. I am so worried that my Cushing’s will come back. I do not want to undergo such experience as I was so traumatized by it.

 

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Melissa, Pituitary Bio

October 22, 2026

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

golden-oldie

 

From August 12, 2007

I am 32 yrs old. I started having sxs after my 3rd daughter. I started to have face numbness and weight gain after my hysterectomy in 2004. I have had depression since the birth of my daughter in 2003. I had face swelling on and off.

I had started a diet (Chicken, fish, turkey burger, veggies and rice) February 2007. High in protein and low in sodium. I had gained about 30-40 pds since my daughter but then again it was 3rd child. I had lost 24 pds, but was not loosing in my face, upper body and still looked 4 months pregnant after loosing weight. Within weeks I had hypertension, hair all over my face, swelling redness of face, headaches, etc. Ended up in the ER still with no diagnosis and everything related to stress.

I work at a OB/GYN as a medical assistant so I knew something was wrong. One of the doctors I work with kept saying I had Cushing’s Disease but I kept putting her off. I had read about it in school but wasn’t hearing it. I finally did a 24hr urine and to my surprise it was over 1100.

My life had changed since I was dx with this. I did the 5 day suppression twice, (lab messed up the first one). Did 2 MRI’s.

Finally in July 2007 they finally found it!!! I had surgery done July 18th. Still currently on medical leave. Surgery went so well no bruising on my “moon face”. Levels did not drop as expected next morning but ok. 2 days postoperative they did drop in 1/2. Yah!! I’m cured. Have felt pretty good, just tired. Two weeks did 24hr urine, blood work cortisol, and ACTH. Still producing all three. Repeated 1 week later less dexamethasone even. Guess what still producing all 3 but now increasing.

Doctor’s suggest I go off of the steroids now (no point of being on them) and we are going to do more testing. Possible ectopic has been suggested. The surgeon does not want to do radiation or removal due to my age.

I am ready to get on with my life now, and I am confused. I would love to hear from someone with any advise or just to have someone talk to who is going through this.

 

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Dominique, Pituitary Bio – Video

October 20, 2026

MaryO Interview, Pituitary, Pituitary Surgery, Success Stories, Treatments, Video , , , , Leave a comment

This interview offers a powerful first-hand account of what it’s really like to live with Cushing’s disease—from the daily struggles and the journey to diagnosis, to the experience of undergoing transsphenoidal pituitary surgery.

 

Kim H, Ectopic Bio

October 16, 2026

MaryO Adrenal Surgery, Carcinoid, Ectopic, Golden Oldies, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , , , 2 Comments

golden-oldie

 

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

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986.

However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

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

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

Update: May, 2007

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

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

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Cathy T, Pituitary Bio

October 16, 2026

MaryO Adrenal, Adrenal Insufficiency, Adrenal Surgery, Golden Oldies, Nelson's, Other Diagnosis, Pituitary, Pituitary Surgery, Recurrence, Treatments , , , , , , , , , , , Leave a comment

 

Hi! My name is Cathy Tia. I’m 27 yrs old and was diagnosed with Cushing’s disease 6 yrs ago while doing my first year of an education degree. I had worked in the fitness industry at that stage for 5 years and was fit and healthy but as soon as I started to fall asleep at the wheel driving into varity. I thought something was wrong symptoms persisted and weight gain fatigue, sweats, acne no periods. The list goes on, started to get out of control.

I went to a endo and she did some tests on my bloods and was shocked that my cortisol levels were in the thousands then we did some 24hr urine tests and they were as high as 3000. After nothing showed up on the MRI scan we did the petrosal sampling and it showed the source from coming from my pituitary gland so I then went to hospital for them to have a look at my pituitary gland they saw no visible tumour and that was that I then was put on a course of drugs as I kept going into adrenal failure where my cortisol levels were as low as minus 10 so no wonder I was in agony and feeling like I was going mentally insane. My weight dropped to 48kgs at the time of low cortisol, then my body changed again weighing in at 70’ish kgs.

I started to get heart palpitations and was exercising so much I nearly dropped dead but nothing I did seemed to help the weigh loss. My cortisol was tested again and again it was high, I went on a block regime to mimic what it would be like to have no adrenals before the trauma of the surgery well as I expected they didn’t bring down the cortisol in fact it increased. I went off all drugs as they made me feel so sick and I couldn’t even hold a job because of no energy etc.

Now 2 yrs later it is back with a vengeance and again there was talk of removing my adrenal glands but I refuse as the pills didn’t work so why would the surgery again? I said I would try the drugs. I have been on them 4 months and my levels which are meant to decrease have gone from 284 this week to 1225. My endo is at her wits end I’m going back to the hospital on Wed but I feel there is no light at the end of the tunnel as I feel we have exhausted all my options.

I’m newly married only 9 months ago I have the most supportive wonderful husband but feel bad for him as we can’t conceive and do normal things young married couple do as I’m always tired and hate going anywhere because of my appearance. If anyone has any answers out there or just words of support I would love to hear from you.

cheers, Cathy ‘mad’ Tia ( at least I feel mad)!!!!!!!!!!

Update Monday June 30, 2003:

Hi. Well, I have had more tests and yes they confirm that my Cushing’s disease is pituitary based, I had an MRI scan last night so we will wait and see if there is any visible change from the one I had done 4 years ago, then from there surgery.

I am gaining more weight and my skin is full of acne even though I’m on an antibiotic and the pill to help it, My periods have stopped even though I’m on the pill and the hair on my face and body is really embarrassing. I have totally lost confidence in myself and any situation I feel is stressful even paying the bills is an effort.

My diet is still very strict only protein and I try and walk and do weights everyday but I feel I’m losing the battle. I hate the waiting for results I just want them to hurry up so I know what my options are start them and get on with life!!!!!!

Frustrated Cathy ‘mad’ Tia (at least I feel mad).

Update Wednesday July 9, 2003:

As you all know I went for an MRI scan last Monday and the Monday just gone I recieved the news I had a 7mm tumour on the left side of my pituitary gland which means removal of that left side, I’m relieved after 6 years of cyclical Cushing’s there is something to show for it at the same time I’m terrified not only about the surgery but all the after effects the drugs the quality of life after this terrible disease!!!!!,

My husband and I are have amazing faith and support from family and friends but it is still such a roller coaster ride we are only 27 years old and have been married for 10 months we don’t know if we will ever have children which is so important for us. We don’t know where life will take us but we do and have accepted this is for a reason god works in mysterious ways so please keep us in your thoughts and prayers as we do for all you fellow Cushing’s patients out there what ever the stage of disease you are at, never ever give up be strong.

cheers, Cathy Tia from little old New Zealand.

Update August 3, 2003:

Hi everyone well it is now the 3rd of August 2003 and I am going to the hospital on Tuesday here in little old New Zealand, to have a meeting with the brain surgeon to go through the procedure. They have found a pit tumor on the left side of my gland and need to remove the whole side. Wow, pretty scary but at least I’ll feel better after 6 yrs of not such great health.

I’m excited about my future and hopefully my husband and I can start our lifes together with children in the future, I’ll write on Tuesday night to tell of my surgery date, if I get one.

Keep the faith, everyone. There is always hope we are the strong ones what doesn’t kill us makes us stronger! Feel free to email me on cathyscurves@hotmail.com.

Update August 22, 2003:

Hi everyone well I haven’t written in a while as you know the hospital systems are slow at getting things moving. As you know a tumour was found on the last MRI but now they think there is more to it so Monday 24th August, tomorrow, I’m going for another CT scan then surgery although I don’t have a date for surgery. I’m hoping it will be in the next month because I want to be out of hospital to share my 1st year wedding anniversary with my wonderful husband my angel here on earth at home not in hospital. I’ll keep you all updated this week for the next chapter.

Hang in there everyone. Remember, if we all stick together and send love through our thoughts we will beat this thing!!! please email me anyone if you want to talk I know I’m down here in little old New Zealand but don’t hesitate.

Update September 15, 2003:

Hi everyone it’s Cathy here agin from little old New Zeland, I finally have a surgery date it is on the 15th of October one month away it’s been a long wait but now I know the date I can plan my life!!!! I should be fighting fit for xmas day that was my goal so My husband and I can plan a holiday a family and get back into full time work. I’m so excited.

Hang in there everyone and please send your prayers and happy vibes my way on the 15th
cheers Cathy ‘mad’ Tia

Update October 10, 2003:

Hi everyone. Well, only 4 more sleeps to go until my 2nd pit surgery. Let’s hope they get the bugger this time. I’ll update you all as soon as I can focus on the computer screen
cheers Cathy

Update October 27, 2003:

Hi everyone! Well, it’s 2 weeks tomorrow post op. I’ve been home 1 week and recovering well, things went to plan as you all know the discomfort only last 3-4 days and my cortisol is dropping which is so positive. We will know for sure in a month. I’m hoping it comes down and stays down so we know I’ve been cured. I’ve already lost 2kg’s and the high colour in my face has gone down my joints are not as sore and my acne is clearing up. I can’t believe in 2 weeks. I’m already looking better. I ask you all to keep praying and sending happy healthy thoughts and vibes my way as you all know this is just the beginning as it is such a reecurrent disease. I really want to avoid having my adrenals out which they will do asap if my cortisol doesn’t stay down. They say this is the only way for sure to cure Cushing’s disease.

But I send hugs and kisses to you all and anyone whos going to have pitaitary surgery either for the 1st time or 2nd don’t worry just relax and go with it rest and recover as much as possible then get your life back please feel free to write to me my email is in this bio.
cheers Cathy ‘Mad’ Tia

Update November 26, 2003:

Hi all, well it is 6 weeks today since my second pituitary surgery, I developed diabetes insipidous but that has gone now hooray no more peeing every 2 minutes, ha, ha.

Well the last 2 blood cortisols were high again so I’m really bummed out the first 3 weeks after surgery it seemed to be on the way down and I lost 5 kg’s I was elated, but now the symptoms have returned the tiredness puffiness etc and I’m not even on any replacements I haven’t had a period so it looks like the adrenals will have to be removed bummer!, I have just completed a 24hr urine collection so the results should be in early next week everything hinges on this result if it is high they are taking me straight back in for the double adrenalectomy if anyone has any suggestions or has had the same experience please email me I feel depressed again just as I thought I had my life back on track.
kind regards Cathy ‘Mad’ Tia

Update December 4, 2003:

Hi everyone me again, well unfortunatley my cortisol is high again after 6 weeks post op so I am booked in to see another surgeon next Wednesday to talk through the procedure of a bilateraladrenelectomy (what a mouthfull), could anyone who has had this done please email me as I’m terrified and want to know what to expect in regards to recovery time, sickness, etc

keep your chins up

talk to you when I have more gossip
Cathy ‘Mad’ Tia

Update January 29, 2004:

Hi all well happy new year to you all. I have a CT scan date on Feb 16th of my adrenal glands then surgery will follow hopefully soon after that I’m scared and would love to hear from others who have had their adrenals out because I’ve heard some horror stories, please email me.

I have had an interview with a local magazine that goes out to the nation telling my story and journey with Cushings disease it was fun my husband and I have had photos etc I will post it when it comes out next week I just want others to be more knowledglable and perhaps people may come forward and talk to me if they suspect they may have it.

I would love to set up a support group in New Zealand because there is no one I can talk to here.

Well I’ll talk to you all soon and please email me if you have any words of encourgement.
God bless Cathy ‘Mad’ Tia

Update February 3, 2004:

Hi all! Well, I have more exciting news from the magazine article that has only been out two days. I have been asked to go on a morning talk show televised across New Zealand to talk about the disease and my story and have already recieved emails from others in NZ that have been cured. It is so positive it makes me want to get on and move forward to help others when I’m finally cured hooray! I’ll update soon when I’ve been on TV.

God is good god bless you all Cathy ‘Mad’ Tia

Update March 30, 2004:

Hi guys. Well I finally have a date for my adrenal surgery. 2 failed pit surgeries so here is their last ditch attempt to cure me hooray!

It is scheduled for the 15th of April 2 weeks time so I’ll get back to you as soon  as I’m up to it, please pray for me as this is the final time hopefully then I’ll be rid of this nasty disease.  I would love you guys to email me whoever has had the adrenals removed to tell me the good and bad things during recovery so I’m prepared.
cheers everyone and hang in there.

hugs cathy ‘mad’ tia

Update April 29, 2004:

Hi everyone. I’m back it’s 2 weeks today since my surgery the removal of both adrenal glands. I feel I’ve been to hell and back over the last 7 years but I’ve come out on top I’m sore and bruised but feeling the best mentally and emotionally the best in almost a decade. I’m on a normal dose of hydrocortisone which understand the average person produces and have already seen marked changes in my appearance like redness had gone, night sweats aches nausea are all gone in only 2 weeks so I’m looking forward to getting my body back.

Thank you all for your support and I will keep you updated as to my situation. You all must hang in there and fight fight fight! Your day will come in those dark days of despair never give up tommorow is always better and you don’t want to let this disease win you can do it.

Update July 3, 2004:

Hi everyone well it’s been ages since I wrote I have had both adrenals out and finally I feel normal most of the Cushing’s symptoms have gone and the old Cathy is slowly emerging it is nearly 3 months since surgery and I have lost 9kgs and am looking not so tired and puffy hooray when people ask how I’ve lost the weight I say I’m on a cortisol diet which they laugh and don’t understand but I know you all do.

Well if any of you are scared to have this surgery don’t be they do it all keyhole so it’s neat and tide and it has changed my life I feel like a near normal 28 yr old who can restart her life my husband and I are so happy we have been given a 2 year gap to try for a family before radiation to the pit gland to avoid Nelson’s Syndrome so it’s not over yet but I believe it will be all worth it soon.

Well take care all hold your heads up high and be strong.

Update September 26, 2004:

Hi it’s Cathy Tia here again, well my husband and i have just celebrated our 2nd wedding anniversary cushing free hooray!! IT IS A BLESSING TO HAVE MY HEALTH BACK. It has been five months since my adrenal surgery and have had one adrenal crisis due to an underlying viris which was a bit scary i was in hospital for 5 days being pumped full of hydrocortisone ironic really after 8 yrs of having too much oh well, i’m back and working full 3 different jobs and loving life. All of you out theree still waiting to be cured please hang in there it is so worth it you will never take life for granted again.

God bless to you all and please never give up.

Update January 31, 2005:

hi all well a little update to my story. It has now been 9 months since i have my adrenal glands removed i have lost 27kg’s and people are starting to recognise me again all of the symptoms are gone i now have addisions disease as my adrenals can shut down the meds i take are cortisone and hydrocortisone to help with balancing my hormones out. I have had one adrenal crisis but recovered well. Peter my husband and i are on the fertility track now i am on fertility drugs to hopefully bring us a little bundle of joy this yr i also have PSCO so having a baby is a challenge but i know God will bless us when the time is right. I am working again like a normal person and can get through the day without a sleep.

Life is great. To all of you in the beginning, midst or end recovery phase of this terrible disease please always have hope and determination, remember you are what you believe so keep positive.

God Bless Cathy ‘mad’ Tia

Update January 31, 2006:

Hi all well it’s beena yr since I wrote. Alot has happened for my husband and I. Last time I wrote we were embarking on a huge rollercoaster ride with IVF fertility treatment and guess what we have had two cycles and the second one worked like a dream. We were given 15% chance of ever getting pregnant with the trteatment so we are proof that doctors only know so much with much gusto determination prayer and support from family and friends we did it we are now 3 and a half months pregnant due August 10th 2006. We feel so blessed and want to let you all know this can happen for you keep the faith and search inside yoiurself about what your life is worth this disease is only a label not who you are, seek and you will find the answers even if it has taken yrs it’s taken me 10yrs of being sick surgeries lost hope and regained faith. God has a plan for all of us and now I’m going to be a mum i can hardly believe the blessings.

I have had 2 trips to the emergency ward with adrenal crisis being pregnant does put stress on the body so now i have altered my drtugs i feel great i have only had 2 weeks of morning sickness and noew i have full energy back and only get tired like anyone at the end of a day. I ahd emergency surgery last week for an abcess caused by mastitis even though i haven’ breast feed they tink because my immunity is lowered by having no adreanl glands it wa so serious.

In my mind I know i always have to be careful but my advice to eveyone is live each day like it is your last be knind and never stop loveing or giving because it will come back in ten folds as it has for me.

God Bless and kind regards to all my fellow cushies, families and supporters.

Hugs cathy tia

Update October 25, 2006:

Hi cathy Tia here from New Zealand last time i was trying to concieve through IVF and we did it we have had a beautiful baby girl Grace Ruby weighing 6 pounds 13 ozes 3 weeks early all is grand with all of us healthy and loving being a family. Keep the faith and hope if you believe with your heart your dreams will come true.

cathy tia

Update February 22, 2007:

hi 22/2/07 cathy here agin

i now have another new 5mm tumour on the right side of pit gland due to having nelsons sydrome after nearly 3 yrs ago having boyth adrenals removed

any suggestions on what to do? they want to give me radation. has anyone had this?

cheers cathy

Update May 3, 2007:

hi all well my daughter is now 9 months old , I mde the decision to havea breast re3euction last week and am so thrilled with the results the 12 yrs of cuhsings and three yrs of addsions (removal of glands due to recureent cushings) ravished my body i feel young again and sexy hooray for my husband!!!

I had a very scary time this week though due to the stress of the surgery on my body my addisions played up big time and i ended up in Er twice having cortisol shots and saline to give me balance, i’m still very tannedyellow and can’t seem to get on top of the balance but feel better than last week.

Has anyody experience addisions after cuahings?, i’d love to hear from you and ask how you mmagae your balances of medications and water balance.

until next time,

Hugs feloow cushies/addisions

Cathy Tia

Update September 17, 2009:

hi all well its been a while my daughter is now 3 and i have a beautiful miracle son called Elijah who is now 6 months old , i ahve had a great run since having my adrenals removed and had the breast reduction i’,m even breast feeding a real miracle and testament that if you have hope you can achieve anything. i ahve had many talks to churches and articles written to educate people in New Zealand and hope to give them hope whatever their circumstances.

unfortunatly i may ahve developed nelsons syndrome so am having an MRI in 2 weeks to see what the pituatary tumour is doing if it has grown i’ll have radiation to shrink it.

hope this finds you all well.

God Bess Cathy Tia

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EvE7070, Pituitary Bio

August 24, 2026

MaryO Pituitary, Pituitary Surgery, Recurrence, Treatments , , , , , , , , , 1 Comment

Hi and good evening new here So im EvE7070 and oh my were do i start.

I was finally diagnosed with Cushing‘s 2015 To wich i had no clue what it was and how horrible it would change my life.

But lets start before when it first started I was a gym rat and eat very lil and would do fasting often and one day my menstrual cycle changed and I stop getting my periods and after that I gained about 60 pounds out of nowhere and I decided to see a doctor who told me that I had a hormone deficiency and they put me on something called glucophage which instead of making me lose weight made me gain another 30 lb within the few months of taking it and nobody knew what was wrong with me or how to treat me and I was very depressed for so long because every time I would see a doctor they would say you’re obese and you need to get on a diet and I would cry and tell them I don’t eat I exercise everyday and I don’t understand what is happening to my body i all of a sudden had every disease you could think of and know doctor could tell me what was wrong

i even got a allergies to peanuts which I had never had a problem with before crazy right

So finally after so many yrs i stated getting headaches to witch they said migraines and then my eyesight started to get affected and finally they said no maybe it’s just a sinus infection to where I had to have an X-ray done of my sinuses and that’s when they saw the tumor and my pituitary gland

So had surgery 2015 was on remission until the beginning of this year I started getting headaches again and my eyesight was starting to mess up and decided to go back to the endocrinologist and now they tell me that my cushing‘s is back and I’m hoping that my MRI comes out okay and I don’t have a tumor again but I don’t know what the odds of that happening again of another tumor this is the hardest thing that I’ve had to go through and I’m having a really hard time trying to adjust again to everything that’s going on with my body they say the second time around is worse than the first time and so far it’s true emotionally my depression is at its highest

I’m having problems with coordination brain fog concentration problems forgetting what i was taking about and im really scared I won’t be able to deal with it this time It took me so long to get back to wat ever normal is and now im back here again

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

July 5, 2026

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

 

hi there…

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

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

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

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

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

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

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

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

Lili

 

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Hannah, Pituitary Bio

June 24, 2026

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

A woman who piled on 10 stone due to a rare condition has shed the weight in just two years, thanks to a daily exercise routine.

Hannah Mai, 37, was diagnosed with Cushing’s disease, a hormonal disorder caused by high cortisol levels, in October 2020 after gaining 10 stone in just two and a half years.

Following her diagnosis, Hannah underwent brain surgery in February 2021 to remove the pituitary tumour causing her condition and was prescribed steroids to manage it.

In April, 2023, Hannah was taken off her steroid medication and was determined to shed the 10 stone she gained due to the disease – who weighed 20 stone 5lbs and was a size 26.

Through a combination of high-protein meals and daily pilates sessions, Hannah impressively slimmed down to 10 stone 4lbs, fitting into a size 10, all within two years.

Hannah, from Coventry, Warwickshire, said: “Once I started losing the weight, I just kept going.

“It isn’t easy, you really have to push yourself, and focus on who you want to be and think about who you want to be.”

When she turned 30, Hannah noticed she started gaining weight and went from nine stone to 16 stone in a few months. She revealed that despite frequent doctor visits, she was constantly asked if she was expecting or if her weight gain was due to hormonal changes.

Hannah shared: “I was always around nine stone, but I noticed how I started to gain a bit of weight. I knew there was something wrong with me, but people around me thought I had changed my diet and asked if I was eating more.

“I was asked if I was pregnant six times, and told that my weight gain could be caused by hormones. I went up to 20 stone at my heaviest.”

In October 2020, over two years since her weight began to increase, Hannah woke up one day with a hunched back.

After a quick Google search suggested Cushing’s disease as a possible cause, and noticing the other symptoms including weight gain, she immediately sought medical advice.

She was referred to University Hospital Coventry & Warwickshire, where an MRI scan and blood tests confirmed she had Cushing’s disease.

Hannah added: “I printed off the list of symptoms and took them to my doctor, who then referred me to the hospital.

“There, I had an MRI scan and blood tests, which confirmed that I had Cushing’s disease.

“I was relieved but scared when I got the diagnosis. I had been saying for years that there was something wrong with me.”

Five months post-diagnosis, in February 2021, Hannah underwent brain surgery to remove the pituitary tumour causing the condition, and was put on steroids to manage her symptoms.

After battling with her health and spending two years on steroids to manage her condition, Hannah came off the medication as her health improved.

After she came off her medication, Hannah said she knew she was better and became determined to lose weight.

She said: “It wasn’t easy to lose weight whilst I was still on steroids, as soon as I came off them, I knew this was my body and I was a lot better.

“I really pushed myself, I worked super hard, cut out all sugar, cut out dairy, and gluten after I was diagnosed with celiac disease.

“I have a low-carb, high-protein diet with lots of vegetables, and I do pilates every day.”

Her commitment paid off as she impressively slimmed down from 20 stone to 10 stone within two years. She went from wearing a size 26 clothes to wearing a size 10 – back to where she was before Cushing’s disease.

Hannah said: “I am super proud of myself, I am always worried that the weight will come back.

“I feel so much happier. When I look back at myself, I just can’t believe I was that size.

“When I look back at old photos, I feel very sad about what happened to me, but it makes me think that I need to be proud about how far I have come.”

Adapted from https://www.mirror.co.uk/news/health/i-gained-10st-due-rare-35432462

Sherri A, Pituitary Bio

June 10, 2026

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

 

44 year old female started out with joint pain and gastrointestinal issues.

Rapid weight gain despite a significant drop in caloric intake due to the gastro problems. Typical Cushings presentation with the weight, purple marks, moon face, fatigue etc .

IPSS is scheduled for June 23 after MRI revealed a Pit. tumor.

Surgery will be scheduled after results from the IPSS.

 

Sherry added her Helpful Doctor, Matthew Gorris, to the Cushing’s MemberMap

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Jean (Jinxie) Cushing’s and Acromegaly Bio

June 7, 2026

MaryO Acromegaly, Adrenal Surgery, Cyclic, Golden Oldies, Pituitary, Pituitary Surgery , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

This bio was originally posted 1/26/2008

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My Cushing’s and Acromegaly Odyssey

During the summer of 1999 I was a trim and fit 130 pound woman. I was very athletic and worked out all the time. At that time I had also been taking Tae Kwon Do. I was able to eat anything that I wanted and not gain weight. I wore size 8 pants.

Fast forward to May of 2000. I developed increasing stomach and bowel problems. I had a spastic colon and serious GERD. Along with that came a poof in my belly. Although I was still wearing the same size my stomach started to look “pregnant”. I was referred to a gastroenterologist who began treating my myriad of health issues. He really couldn’t find a reason for all of it but said he could treat it. For awhile I managed okay on the drugs and diet that I was treated with. Everything went in cycles.

During the summer of 2001 my naturally light blonde hair began to change color. It got black and mousy looking at the roots. At the same time it started thinning, the texture was horrible and no longer shiny and baby soft. I developed heat intolerance. I was uncomfortable in 80 degree weather. I also developed strange rashes and red dots on my skin. Later that fall my neck and face started to turn beet red. It stayed that way.

I could no longer fit in my wedding rings and my shoe size went from a size 7 ½ to and 8 1/2. Doctors didn’t find this impressive. My neck went from 13 inches around to 16. I gained 12 pounds in 1 week alone. I started getting real fat in my stomach and armpits, and I could no longer wear normal bras. I also started getting a lot of fat on my upper back. I grew hair in places that women should not grow hair. My face was huge with strange acne outbreaks. I also got acne in weird spots.

At the time I had put on about 20 pounds all in my stomach. When I would try other clothing it wouldn’t work because the next size bigger fit in the waist but the butt and legs were huge. I gave up on real pants and started to wear stretch clothes all the time. At this time I could no longer exercise to my peak performance. I was tired all the time and never felt well and I looked like I was 6 months pregnant. I thought that I was getting old.

January of 2002 my bowel and stomach troubles peaked. I was in and out of the hospital. Although I was following the healthy eating plan and exercising no doctors believed me. My PCP did a TSH test and it came back at 27.48. I was hypothyroid, at that time my estradiol levels were also non-existent. So off I was sent to an Endocrinologist. I was given replacements for both yet nothing improved.

This started an intense year of doctors. I was diagnosed with anything and everything at this point. I was started on the Atkins diet plan. I followed this religiously and walked for up to 2 hours a day and continued to gain weight. By this time I was 165 pounds. Finally realizing that something horrible was wrong with me I started seeking out Endo’s on my own. It led me to one who thought he should do a few 24 UFC’s. One came back high, 2 others came back high normal (33.4 and 33.9 with a range of 2.9-34). They then did serum cortisols which came back below normal. I was frustrated.

It was November by now and I was getting no where fast. At this point I had seen 11 different doctors. The last of which told me that there was no way I was eating healthy and not losing. He even suggested that my fresh sliced berry snack was making me fat. By now I’ developed high blood pressure and high blood sugars. My fasting blood glucose came in at 170.

By this time I was so exhausted and developed such horrid bone pain that I could not even exercise anymore. I remember waking up late one morning and crying. I went downstairs and told my hubby I was sure my back was breaking. It was horrible. I weighed 196 pounds and looked 9 months pregnant with triplets.

I came home and looked the tests up on the internet. I started reading everything that I could find. I knew then that I had Cushing’s. I found the Cushing’s help site. The trouble was that some tests were normal and some were abnormal. Finally in January of 2003 I went to see Dr. Friedman after another patient emailed me. Dr. Friedman tested my 17-Hydroxysteroids and 17- Ketosteroids which came back elevated. He also did some additional salivary cortisols testing. He finally figured out that I not only had Cyclic Cushing’s but also Acromegaly.

After many more tests and some MRI’s my tumors were found. I had pituitary surgery to remove them. I was devastated that I was not cured from the Cushing’s. After much consulting I decided to proceed with a Bilateral Adrenalectomy to cure it once and for all. I am recovering slowly but surely.

I am now 4 months post-op.

Click any thumbnail to view the larger image.

Before Cushing’s [Photographer: Jeanne’s family]

In the kitchen [Photographer: Jeanne’s family]

Jinxie [Photographer: Jeanne’s family]

Jinxie [Photographer: Jeanne’s family]

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