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Raveh I, Adrenal Bio

October 21, 2025

MaryO Adrenal, Adrenal Surgery, Treatments , , , , , , 3 Comments

Hello, my name is Inbar & I’m from Israel.

First of all I want to apologize my poor English, It’s only what I have learned through high school. Second I’m thrilled & exited finding other people who are facing the Cushing syndrome difficulties, fears & symptoms.

In my small country I wasn’t able to find any other forum I could share with.

Since the Cushing disease is more common, there is an association for those who have it. After speaking to one of there representatives I was disappointed to find out that the physical, mental, emotional and psychological difficulties are not the same & unfortunately they could not help me in any way.

I had a 5 cm tumor on my left adrenal which was removed 8 mounts ago.

I have carried this illness for at least 5 years facing all of the symptoms.

Since January I’m seeing a psychiatrist & taking all kinds psychiatric pills.

Yesterday I started seeing also a psychologist & came out very disappointed, since my problem is chemistry, psychological treatment won’t help.

I would be thankful for any self experience from any one.  I’m very close to having a breakdown.

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Andrea (AndreaM), Pituitary Bio

October 18, 2025

MaryO Adrenal Surgery, Pituitary, Pituitary Surgery, radiation, Recurrence, Success Stories, Treatments , , , , , , , , , , , , , Leave a comment

I suffered from Cushings when I was 9 years old. I had pituitary surgery, bilateral adrenalectomy (back in 1988 when it was not laparoscopic), then 2 more pituitary surgeries as my tumor grew and regrew too close to the optic nerve. My last pituitary surgery was followed by Gamma Knife Radiation. That was when I was 19. Thankfully, since then, my ACTH levels have been normal, so there is no evidence of regrowth of pituitary tumor. I just turned 36.

The good news is that despite needing repeated pituitary surgery, I recovered well from the Cushings once my adrenals were removed and I was on daily replacement steroids. I have gone on to have a fairly normal life, including 4 children with no help needed in conceiving. I guess the doctors consider this basically a miracle considering my irregular cycles and all the pituitary surgery. I did end up with diabetes insipidus from the last pituitary surgery, which is probably the most uncomfortable (and expensive) lingering problem. It can be very uncomfortable at times, particularly when pregnant is is difficult to get the right dose of DDAVP.

Not sure what prompted me to look online for others with Cushings Disease/post adrenalectomy, but I have never in my life met anyone else with my condition and my endocrinologist says she has only one other patient with adrenal problems, but that person still at least has 1. Of course doctors can’t tell you who their other patients are anyway. Obviously when I was actually suffering from Cushings there was no Internet. I guess it would just be interesting to compare notes about living without adrenal glands. Since I was so young when it happened it is all I’ve known and I’m thankful for how basically normal my life is. I see too that I can encourage people that although I do take 3 medications multiple times daily, I basically have a normal life, including 4 normal, healthy children ages 9, 7, 5, and 2.

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Tina H (TinaHardenMississippi), Pituitary Bio

October 17, 2025

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

Hi everyone! I’m 41 yrs old, I live in Mississippi with my hubby & our precious 14 yr old daughter.

I have suffered with so many health problems since I was around 16 yrs old.

I was just diagnosed with Cushing’s in Sept. 2013, I found out it was from a pituitary tumor in Nov. 2013. I had an IPSS in April 2014 and surgery to removed pit tumor June 13, 2014.

Contact Tina here.

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Cathy L (CathyL), Pituitary Bio

October 16, 2025

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

I am 55 years old and my symptoms began long ago I believe.  I have had my tumor out and have not had any recurrance since 2009 when I had it out but unfortunately am still a little paranoid (to the extent that I will spend $100 on a saliva test once or twice a year) when I have any symptoms.

1998 out of the blue started having heart palpatations at night ( endocrinologist still insists that was not part of it but it stopped when my tumor was removed!!!(So far have yet to find an endocrinologist that I love…very narrow minded and refuse to admit how little they really know about Cushings).

2003 started Natural Progesterone cream due to fibrocystic breasts and low libido & just general breast cancer prevention.  No MD ever had a problem with that.

2005 – 1st saliva test just personal curiosity about hormone levels.

2006 started feeling lump in my throat when swallowing so went to ENT —found nothing out of the ordinary (with 20/20 hindsight suspect it was the supraclavicular swelling starting internally.

2007 upper GI just to be sure nothing in my throat per ENT referral–found nothing.

2007 starting to show supraclavicular fat pads 2 MDs & 2 surgeons seen for those & none of them picked up on the Cushings from that. Also had complained to my OBGYN @ the sensation of my uterus dropping out of my vagina — he saw no physical reason for this sensation but with cental obesity getting slowly worse (155 compared to my normal 135 lbs) i suspect there was downward pressure esp when walking & standing for long periods of time.

Finally in 2008 one of my MD patients suggested Cushings & BINGO everybody suddenly saw the light.  Abdominal CTs showed no adrenal problems MRI showed 5mm microadenoma (well circumscribed) .

My brother in law is a neuro-surgeon & in our area if you ever have anything weird going on you go to Duke but he said in this particular area you want UVA (a “Pituitary Center of Excellence”).  Dr. Ed Oldfield took out my tumor & so far so good.  I had to supplement cortisal at first but within 6 months I was off it & my body was making its own.  I feel that I was very lucky.  They say that the majority of MDs go thru their entire career without seeing a case of Cushings (OR knowing that’s what they are looking at). I would definately recommend not just letting any Joe-Blow neurosurgeon do your surgery – the more they have done the more likely the success.

I’m sorry this IS an update of my just submitted bio & I don’t know what my URL link is.   But I do feel that the 4 time cortisol saliva test was how mine was diagnosed because my morning cortisol which is all the MDs ever wanted to take was never off the charts IT WAS MY PM CORTISOL that gave it away.  Then total urinary cortisol measurement.  Sorry but I thought this was an important addition.  Yayy saliva testing!!!

Contact Cathy Leigh, DDS here.

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In Memory: Bonny Hamm, October 12, 2009

October 12, 2025

MaryO Adrenal, Adrenal Surgery, In Memory, Recurrence, Treatments , , , , , , , , , , Leave a comment

in-memory

 

I did not know Bonny personally but she was an Australian  member of the Cushing’s Help message boards who rarely posted.  Her In Memory page on the boards is here: http://cushings.invisionzone.com/index.php?/topic/43923-rip-bonny/

She was only 45 at the time of her death October 12, 2009.  I’ve known far too many Cushies who have died far too young from this disease.

Bonnie’s Avatar

Bonny wrote July 1, 2009

I was sick with ALL the symptoms (about 30-40) for 5 years. Finally got correctly diagonosed and had my left Adrenal Gland and its tumour removed in June 2007. The recovery was long and hellish. The worst symptom after the operation was 3 months of constant itching literally from my scalp to my heels and every inch of skin in between. I also had pain in every single joint of my body, along with all the pre op symptoms that took a long long time to improve.

Now two and a half years on, I have a second tumour… on the same side! No idea how that can be seeing as the gland is gone. My Endo is overseas so until he comes back I don’t know much, but they are running more tests and I am waiting for a surgery date to go through it all over again!

All the symptoms are horrible, but last time I particularly hated the fractures (still have a few of those),as they made life so difficutlt and painful, but also relly hated losing half my hair, and the weight gain and moon face. Feeling awful is terrible, but when you add the things that make you look horrible too, its pretty hard to take.

As a single parent, (divorced), life is very hard with Cushings as you don’t have anyone else to do the things for you that you cant do yourself, or help you with your own personal stuff.

Before and after Cushings

Before and after Cushing’s pictures.

Rest in peace, Bonny!

Beth said it best on Facebook

(I) lost a very strong, courageous friend to the very disease she suffers from.. your pain is gone now, Bonny.. Rest well and thank you for touching my life. ♥

Denise H (deekay), Pituitary Bio

October 4, 2025

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

I am a 45 yr old female

pituitary-glandI was dignosed with Cushing’s in April 2013 i had surgery in June 2013 to remove a tumor on my pituitary gland.

I have had some ups and downs with joint and muscle pains and emotional issues.After my 8 week check up they decreased my meds down but my levels were not normal at that time yet.   I just recently had my blood checked again and my levels were really high in the normal range so they advised me that I could stop taking my meds all together which they say is a great thing.

I had been having some of the same issues and symptoms as when i first went to doctor that  started coming up this is why i asked for blood test in first place and they are stating with meds and my own levels i am once again overproducing makes sense.  However i am not feeling well at all severe muscle pains in knees and feel like i need a crane to get out of bed from being so stiff everyday.

I feel like i am once again an emotional wreck and have issues and nobobdy seem to understand this terrible disease and what it does to your body and one’s self.  I have been married 23 yrs and have 2 beautiful daughters.

I gained over 45 pounds with all this I am down about 20 so far still have a ways to go for sure.

I really  need some support with dealing with all this they say about 6-18 months to truly recover from this and feel so alone sometimes.

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Elana, Adrenal Bio

September 29, 2025

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

A Golden Oldie

The adrenal glands sit atop the kidneys.

The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia)

I was diagnosed with cushing syndrome in February as my cortisol levels were over 300.

A benign tumor was found on my right adrenal gland and it was removed May 3rd. I guess I thought everything would be fine after.  My left adrenal gland is still not producing any cortisol so I am on hydrocortisone.

I wake up everymorning with diarrhea and I am nauseas nearly all day.  I thought this would end after the surgery but now I am losing weight because I am not eating and my Endocrinologist says these symptoms are not due to the cushings and I should investigate further.

I don’t know where to turn?

 

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Syndi, Pituitary Bio

September 27, 2025

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

A Golden Oldie

My partial bio…Hi everyone.  Dr. Ludlam in Seattle, WA is 99.999% certain I have Cushing’s Disease, probably Cyclic but I believe I used to be all the time.  I do have a tumor on my pituitary but before Dr. L can say 100% Cushing’s Disease, he needs one more test (?) before he sends me to the surgeon.  He’s concerned there may be another tumor elsewhere and needs to make certain.  Something my family does not accept.  They view all this “testing” as a money making scam.  But with my thought process being so poorly, I can’t explain myself.

One daughter went with me last visit with Dr. L and understands the severity of this but noone wants to believe her either.  Last time I saw my Dr. was 3 years ago.  Why?  My husband has always been the sole breadwinner, I was a full time mother of 4, working some here and there and even finished college.  Yea me.  BUT, for years now, I’ve not been able to think well, have difficulty getting around, have more bad days than good.  My life is just about exisitng.

But my husband has terminal Cancer, a Heart condition but working again these days but don’t how long that’ll be.  When he couldn’t work, we lived off and spent all our savings, sold belongings, etc and during all this, we lost our Medical Ins AND our Life Ins.  The Lifs Ins has been heart breaking!  All we’ve put into it for over 30 years.  Such a loss!!!

So, life for us has been really bad for years in soooo many ways.  Can we say stress?  No one can imagine all we’ve been through.  It’s honestly been more than all Soap Operas together.  So much, that I’ve cut myself off from all friends, due to not having anything positive to share.  How sad?!?  I’ve always been a huge social person, on the  go and having something constantly going on with tons of people around.  NOT anymore.  I call noone!  Ok, my Mama.  So, the Ins loss and money issues has been my reasoning for not seeing my Dr.

But my goal this year is to so what I can to take care of me!  I finally got Med Ins but it’s not great, but better than nothing.  I’ll be having a heart cath (I think it’s) next week, so problems have just gotten worse than better.  As you know, with this disease, it’s always something.  grrr  Anyway, I’ll come back here (when I remember) and rewrite or simplify.  There is way too much to share at this moment.

Mary O, thank you so much for taking the time to love other’s enough to have this site!  My biggest issue right now is to find the very Drs in the US.  It may be Dr. Ludlam but with my husband’s thoughts, I need to hear from others about him and other’s.  Love life and live it the best you can, even if it’s sitting in a chair.

Syndi of Alabama

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Cassie, Pituitary Bio

September 26, 2025

MaryO Golden Oldies, Pituitary, Pituitary Surgery, Treatments , , , , , , 2 Comments

A Golden Oldie

Hi.  I was diagnosed with a 2.5 pituitary tumor and Cushing’s Disease in late April.  I had surgery and it was removed in early May.

I was feeling fantastic until mid-July.  Now I have pain constantly. My joints and muscles hurt so badly that I can barely walk.

I was so happy to have the diagnoses after 25 years of complaining to doctors about my symptoms.  However, I am in so much pain now that I almost wish I had never had the surgery.

On the up side, I’ve lost almost 40 lbs. Help!!

Any advise would be incredibly helpful.

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Melissa C, Pituitary Bio

September 20, 2025

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

A Golden Oldie

It started with severe skin acne on my back and arms. Then the bloating started. I went from one docter to the other. For months and months I was left undiagnosed. I gained so much weight, I went from a xs to a xl in a matter of 2 months.

My sugar levels was out of control and I could not concentrate on my studies. My hair started falling out and I got ugly stretch marks all over my hips and thighs.

I was finally diagnosed and had the tumar removed. Its a few weeks after surgery and I have started losing weight. I still feel ugly though, Im getting treated for low cortisol levels and I still have head aches.

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