Home

In Memory: Martha, October 14, 2008

October 14, 2025

MaryO In Memory, Pituitary , , , , Leave a comment

in-memory

 

StaceyH posted this on the boards:

I just wanted you good folks to know that my dear Martha and partner for 11 years passed away this evening. I’m not sure why I am posting this now, just one thing to check off my to do list and hoping that getting this in writing will help me.

Dr. F had wanted to give Martha an IPSS, but she had a problem with an EKG two weeks ago so the doctor would not release her for surgery. She went for a cardio strees test last week and was to get her results tomorrow. She was feeling “ok” but when I arrived home this evening, I found her in the bathroom. I tried to give her CPR but I really knew it was too late.

She was such a good woman, loved her horror movies and we loved to watch them together. She cared deeply for other people and would go out of her way to tell a stranger hello and learn their name. She was even known to give little old ladies that she didn’t know a ride home if they would let her.

I’m going to miss her so much. This was so unexpected, but deep in my heart – expected. Please, love your loved one like it’s your or their last breath. Push your doctors and advocate for yourselves.

Although Martha never used this forum, she told me she was grateful that all of you were here to answer our questions and accepted us with open arms.

In lieu of flowers that may be coming, I would like people to donate to this forum in memory of Martha. Do you know who to contact or who donations should be sent to via mail?

Please feel free to move this to the In Memory thread.

Thank you again you good folks….
Stacey

Read more about Martha’s story here: A tribute to Martha on Robin’s Blog.

Pati, Pituitary Bio

September 5, 2025

MaryO Golden Oldies, Pituitary , , , , 2 Comments

A Golden Oldie

My daughter is 13 and has been diagnosed with Cushings Disease.  We are having our final MRI and IPSS test this coming week and surgery in September.

I am looking for all the information I can find!

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Voices From the Past: Crystal (Crystal), Pituitary Bio

July 25, 2025

MaryO Pituitary, Pituitary Surgery, Treatments , , , , , , , 3 Comments

 

Hi, my name is Crystal and I’m new. I’m a 35 yr.old mother of a 5 yr. old with more energy in her little pinky than I have in an entire day and I’m married to an amazing man, who makes living with this possible.

I was finally diagnosed with Cushing’s Disease (excreting pituitary tumor). In April 2017. I had the typical doctor who didn’t believe me so I took it into my own hands and figured out what I thought was going on….Cushings without a doubt in my mind.

So I went to a naturopath and asked her to order me a 24 hr. urine test and when she got it she said I need to go to an endo asap. I had already made appointments with two, one being at OHSU in Oregon with one of the best pit. teams in the US. I only live 2 hrs. away and am sooo lucky for that. I know many people have to travel much further to get the best healthcare for this.

Anyways, the endo I saw in Portland looked at me and immediately and said I had a very cushoid appearance and that we needed to do about 6 tests in the next two weeks. I did the tests, then had to do an MRI, which showed a 5×4 tumor in my pituitary gland, next was an IPSS to make sure it was 100% pituitary and not ectopic coming from somewhere else in my body. Once this was all confirmed I was scheduled for surgery in June.

As my surgery date approached, my symptoms got significantly worse and I finally called my endo to tell them. The nurse told me I had to deal with it until surgery and that there was nothing tI could do about my symptoms. Within 5 minutes of hanging up the assistant to the neurosurgeon called and told me surgery was being moved to the following week which was four days away. I had the transsphenoidal surgery about 6 weeks ago and my cortisol dropped to 0.6 in less than 24 hours after surgery. The neurosurgeon said I was technically in remission and although I’m happy, it seems to good to be true after the last couple years I’ve had. I came to this site looking for information on recovery. I know everyone is different and I was warned a little bit about it, but I’m pretty miserable and very curious how others recoveries are going.

Thanks, glad to be here. Crystal

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Voices from the Past: Rox (Rox) Undiagnosed Bio

July 20, 2025

MaryO Pituitary, Undiagnosed , , , , , 1 Comment

undiagnosed2

40yo female, in the process of diagnosis, high cortisol confirmed by UFCC (4x) & saliv cort (2x) & serum, high ACTH, DHEA, & MSH; did not suppress on DST (0.5mg dose), suppressed on high dose (1.0mg), 7mm pit tumor by MRI. Waiting for decision point from endo, considering IPSS or transphenoid. Aware of BLA as an alternative but that seems to be roundly not recommended as first-line treatment from all the reading I’ve done.

Primary question is if anyone has experience with Dr. Daniel Kelly in Santa Monica? He works with my endo and was recommended. I am open to nationwide if necessary, but if he ranks at the top anyway then would go with him.

Is QOL typically worse after surgery? If so, what’s the point?

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

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

July 5, 2025

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

 

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Archived Interview: Rebecca D (Rebecca D), Pituitary Patient

May 14, 2019

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

Hi Ladies and Gents, my fellow Cushies!

I am a currently mid 20s student living in Toronto, ON, CAN, with big dreams and a big heart. I have been part of this network for a while now and although I’m not always active on the site, I am always eager to spread the word, the love, the support for any of you!!! Just contact me, anytime!

As for myself, I began gaining weight and not being able to control it when I was in my late teens/early 20s.

In 2007/2008 I began trying to figure out what was going on with my current family Doctor with no success. My mother (xoxox) was the smart cookie who saw an episode of “mystery diagnosis” and said “THAT’S MY LITTLE GIRL IN A NUTSHELL!”

Ironically, my family MD at the time AND the one after that said that was a ridiculous idea and it couldn’t be that and simply DID NOT TEST ME.

Luckily, in 2009 when I moved to Toronto for my new degree, I met with a new Doctor who is an admitted “over tester”, however she did help steer me to my Endocrinologist for the diagnosis. It took nearly 2 years of testing, Dex-suppression tests, IPSS, vials of blood gone, MRI’s, CT’s, and too many jugs of 24-hour urine tests we had it narrowed to a pituitary cause but could not locate it on imagine or by approximate location (right, left, etc).

So the wait began as I was referred to my neurosurgeon and the Pituitary Clinic and their hospital until the day came and I went under!

After 6 months of excruciatingly long and painful recovery (which I know any of us who have gone, are going through, or are awaiting to go through where they mess with our signalling organs can understand) I was finally feeling back to myself, my cortisol was in its normal range after tapering off of oral hydrocortisone (oh the irony) and have been feeling pretty great since, Some weight has come off, my stripes have faded (don’t worry, if you look hard enough you can still see them) and I hope to stay on a positive road of recovery! *knock on wood*

I must say, I never expected to the one in a million… and it wasn’t the “one in a million” I expected to be…  You can’t change the past but you can make the best of your future. I’m proud to be a Cushie, I’m grateful to have you all as my “family”, and you are all “one in a million” as well 🙂

Be Proud, Be Strong, Be Fierce… but most importantly, Be Happy

Stay Beautiful xoxox

Archives are available at this same link after the interview and in the Cushie Podcast at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Margaret (Margaret), Pituitary Bio

June 25, 2017

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

 

Originally from December 22, 2008

I have recently been diagnosised with Cushing disease.

I began having problems about 5 years ago with high blood pressure and weight gain medication brought blood pressure under control and diet pills helped me to lose a little weight.

Then just in 2008 started having stress fxs of feet for no reason bone densitiy test revealed osteopenia but with fxs osteoporsis. Blood pressure kept going higher but would not respond to more medicine. Started having kidney stones. Diagnosised with migraines/cluster headaches but mediciations not working very well, pain mainly on left side behide eye always. Had shingles. All this before I was 40. I always said “I am too young to be so old” now I know why. When blood pressure wouldn’t respond to meds I started investigating and asked PCP to do 24 free urine. I read her notes she put in there “patient thinks she has cushings” Well when first 24 free urine came back 141 range 3-50 She wouldn’t even talk to me just sent me straight to endocrinologist. He did cortisol total am (did it later than should cause of lab problem 10:30 am) it was still high 42.8 Second 24 free urine was 339 this time 1 mg dex suppression was 25.7 saliva was high too but hasn’t gotten numbers yet.

Waiting for MRI with contrast reults but 8 mg dex supp did suppress so we know it is pituitary.

It kinda has been a whirlwind cause first test was done in October 2008.

Oh did I mention the 60 lbs I put on in like 7 months!!!!!! I look 7 months pregnant!!! ANd fatigue I get sooo tired just cleaning house. I went to my GYN a few months ago and was told in a round about way that I was overweight and of course overweight people have less energy and excessive sweating. So she said eat less exercise more.

I am in touch with Dr Jane at UVA in Charlottesville VA and as soon as he reads reports, sees films etc he will schedule me for IPSS if needed and surgery.

I am scared and excited. Scared about what lies ahead the next year Excited that one day I may be “normal” again. Looking back at pictures from a few years ago makes me cry (something else I do more of lately) There are 2 different people then and now.

I am 41 years old now, married, mother to 3 girls (ages 14,9,and 8). I have a great job as a surgical tech doing just cataract surgery with 3 great doctors.

I am very scared and excited.

Blogger jackie m said…

my thoughts are with you margaret .I have had pit surgery and radiotherapy
it can be a long a drawn out process but keep positive jackie m from uk

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Jennifer, Undiagnosed Bio

April 2, 2017

MaryO Golden Oldies, Undiagnosed, Update , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 2 Comments

 

Hello, I am a 33 yearl old female who has been living a nightmare for the last 5 years as I have seen my total health delcine before my eyes.

I have gained massive amounts of weight with no medical reason, my monthly cycle has left me, insomnia, severe depression and anxiety for no reason, infertility, allmy obesity is in my stomach and upper back, I have developed sleep apnea from having a thick neck, I have the infamous buffalo hump, hair loss of 50% of my hair, I cannot lose weight no matter what I do, I take these weird week spells where I cannote even get out of bed, hair has literally stopped growing on my legs and other areas of my body, except on my chin and abdomen where I do not want it to grow, my face is round and red and people who see me cannot believe this transformation my body has undertaken and I then have to hear how could have let myself go? If you would just stay on a diet longer than 2 weeks? I am glad that my children are not fat? I could go on and on the emotionally abuse I have had to enudre the last 5-6 years.

I have exercised and exercised to no improvement other than I feel exhausted, I eat a very strict diet, my Mother had to move over here with us because I no longer can care for my children and need her help. I have medical bills back in the states that are like science fiction.

I finally got diagnosed with hypothyroidism and still feel horrible, I have to take Toprol XL for heart palpitations without no explanation from where they are coming from it is so much easier for some physicians to keep just giving you pills instead of trying to figure out what is the root problem.

I now live in a foreign country where it is even harder on me, but I do have an appointment after 10 months with an Endocrinologist here in Doha tomorrow and on November 9th I have an appointment to go see a Cushings Expert in the UAE in Dubai his name is Dr. Taher so I will give an update after theses two visits.

Jennifer
Doha, Qatar

Update December 30, 2007

Hello My name is Jennifer and I am a 33 year old American living in Doha, Qatar (Middle-East), I was finally sent to Dubai and seen an Endocrinologist and he did an MRI and i have two pituitary tumors and he believes that I do have Cushings so he referred me to see Dr. Bill Ludlam, MD in Seatte in January 2008 to get further testing.

I know that there were something worng with me a long time ago but I never knew it was something as stealthy as this disease possibly, I have all the classical symptoms. Also the tesing is so so expensive in the States so I am waiting for the Qatari Governments approval for my medical expenses in Seattle.

I will giva another update soon.

Update May 28, 2008

My current update. I did go see Dr. Ludlam with no avail since my insurance would not pay for him but he did state that I needed further testing so after I left Washington I went to my friends house in Alaska just to have time to think since my husband and I are seperated.

I decided to go back home to West Virginia to be with my family for support and see a Doctor there bringing all my reports and scans to him from the Dr. in the Middle-East and Dr. Ludlmas suggestions.

I seen Dr Yakub and they did tests and all of them came back positive for Cushings my urine, salivory and blood several times came back positive and high for Cushings , also my MRI in January showed that my pituitary tumors are still there.

He is a good doctor and is located in Huntington West Virginia and he not only practices Endocrinology but he is also a Professor of Endocrinology at Marshall University School of Medicine. I will keep all of you updated and thank you so much for your support through this trying time in my life and I pray that all of the Cushies on this board get diagnosed, treated and healed.

Update July 10, 2008

I have finally got my diagnosis and I am heading to the University of Virgnia in Charloettesville on July 23rd! I will update what happens from there. I would also like to say thank you to Christi who has helaped me and talked to me through this difficult time.

Update September 19, 2008

Hello Everyone I am so sorry that it has taken me son long to get back with you I had my Inferior Petrosal Sinus Sampling done this week at the University of Virginia in Charlottesville and it is confirmed I have pituitary dependent Cushings and I am scheduled for surgery the first week of October with Dr. John Jane Jr. They are great at the University of Virginia and I am so thankful for them. I am hoping that someone will take me under their wing while I am getting ready for surgery and give me some advice. I would really appreciate the help.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Michelle B (Mshelle), Cyclic Cushing’s Bio

April 24, 2015

MaryO BlogTalkRadio, Cyclic, Interview, Other Diagnosis, PCOS , , , , , , , , , , , , , , , , , , , , , , , , , , , 5 Comments

Hello all, I’m Michelle mother of 3 beautiful children, I work part-time, 33yrs young, non-smoker, non-drinker, overall health is good for the most part…..Where do I even begin.

I just recently received the diagnosis of cyclic Cushing’s. I’m not really sure how long I have actually had Cushing’s because I have had a diagnosis of PCOS since I was 17 yrs. old ( I’m now the ripe young age of 33). However looking back through labs with my endocrinologist who I see every 6 months, my ACTH levels have been elevated for a bit over 1 yr. It was not until recently January of 2015- things were going terribly wrong.

Starting in January I started to feel genuinely unwell, on a regular basis. I cant really explain all my symptoms there were so many different sensations and feelings that were seemingly different daily. However the red flag was I was having blood pressure spikes from really high, to very low back to back. I never had any blood pressure issues so this was a concern that led me to see a cardiologist. Upon tons of testing the cardio MD felt that something was telling my otherwise very healthy heart to do this and I should see a endocrinologist. (thank goodness for him) I contacted my endo and let him know…. the testing began.

I did every test: the midnightcortisol saliva test, dex suppression, 24 hr urine test, CRH stimulation testing. And I did them more than once. Each time it was a different response either, inconclusive, normal high, or high. I was then referred to the head of the Cleveland clinics pituitary department Dr. Kennedy. He said he is having a hard time believing when he looks at me that its Cushing’s. However all my labs say it is. I will say I do fit the mold of PCOS to a tee- which symptoms of that do coincide with Cushing’s but he still said we have to be sure its Cushing’s. To add to the mix I did have a normal MRI as well.

Dr. Kennedy started me on a 2 week midnight cortisol saliva test- Upon completion we noted levels of cortisol all over the place, some Normal, normal on high range, high, and really high. He confirmed with all the other tests this is Cushing’s. Now we are trying to figure out what is next…. and where is this damn little tumor at. he feels that it is most likely in the pituitary from my test results, but we still are not ruling out else where. He is thinking that the next step would be exploratory neurosurgery or the IPSS. I’m not sure what to think of all this, except I want to hope for the best like everyone- and just be cured!!

On a side note during all of this I also had episodes of severe pain in my chest and nausea. I went to see a GI who did an upper endo scope. They found I had eosinpphilic esophagitis. I also have never had any GI problems until now; and they came on suddenly. Im also having pain in my pancreas area- not sure if any of the two are related at all to Cushing’s. But once again I was fine until recently with all these issues at once it seems.

wish me luck on further testing, treatment, and ultimately a CURE!!

interview

Michelle was our guest in an interview on BlogTalk Radio  Wednesday, May 13, 2015

The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. There are currently 83 other past interviews for your listening pleasure!

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Steve, Pituitary Bio

April 1, 2015

MaryO Golden Oldies, Male, Pituitary, Success Stories , , , , , , , , , , , , , , , Leave a comment

golden-oldie

 

I am a 43 year old man from South Carolina who has been a “big boy” most of my adult life and have been pretty healthy until early 2003 when i started noticing marked weakness in my legs. At the time I was on a diet and thought I was just deficient in something and started trying all kinds of supplements but nothing helped. I was kinda checking my bp here and there and it was very high so I decided to go to my gp because I was due for a physical anyway. He saw me and I told him about my leg and arm muscle weakness and he started asking lots more questions about my moods, vision, looked at my stretch marks and felt my noticable hump and said that it looks like cushings but probably isn’t because it’s so rare. He sent me to an endo “just in case, to rule it out”.

I have since found out how blessed I am to have had this gp and to be referred on the 1st visit. My endo agreed and started lots of tests (I never gave so much blood or peed so much in my life!) and even though after a CT and MRI they couldn’t see any tumors, he referred me to Drs. Vance and Laws at UVA Medical Ctr. who are wonderful! After an IPSS I was diagnosed and it was caused by a tumor on the pituitary.

I had transphenoidal surgery on Feb. 7, 2004 and after no change in my cort levels in 4 days they decided to go back in and operate on the other side which resulted in complete removal of the pitiutary. I never did “crash” so they sent me home saying I definitely would in a few days. It is now March 2005 and I am still waiting to crash. I never had to take steroids due to my levels being near normal and although I am due for another check-up in a month, I feel pretty good, having gained 90% of my strength back along with most other symptoms getting better. The wierd thing is that Dr Vance thinks that I am in remission from cushings but I am a rare case (I guess that makes me rare among the rare!). One year post-op and I am only on bp meds and thyroid replacement and testosterone replacement, that’s all.

I am a lurker here and was during my darkest days and appreciate all the help this site has given.

The recurrence of this disease seems to be high, among posters here anyway, but I am optimistic that I am through with cushings for good and just have to deal with hormone replacement.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Older Entries Newer Entries