Q&A with young Cushing's Disease patient who underwent a bilateral adrenalectomy (BLA) 6 months ago

[@luckyneko1]

I was diagnosed last year at age 63. I've been looking for answers for 35 years. My Endocrinologist says it's possible that I've had Cushings all of these years. So sad because it stole my life. I hope they can help me.

[@carlingadrenalcenter]

So sorry to hear how long you have been struggling with this. You can connect with Dr. Carling directly by filling out the form at this link: www.adrenal.com/adrenal-surgeon

[@Crash-Rest-Yummy]

I'm so Sorry to hear, can u describe you're symptoms,? It would be a huge help, i wish u better healt cause u deserve it, omg.

[@luckyneko1]

@@Crash-Rest-Yummy Thank you. ❤️ I went to the Endocrinologist in an effort to find an answer for why I've been exhausted since my late 20's. No other doctor could give be an answer. Also I have low sodium levels in my blood and my other doctors didn't know why. Another thing is I was diagnosed with Osteoporosis and no one in my family has it. The doctor said that Cushings causes that. I will say that I don't have a lot of the symptoms that many Cushings patients do. They cannot lose weight no matter how hard they try. The weight seems to really concentrate on their bellies. Many have a lump at the base of their neck in the back and red and purple stretch marks. I hope whatever issues you are having can be resolved. If you think you have Cushings there are good groups in Facebook where you can talk with other people.

[@CB-uz1xo]

Same here I lived with it all my life and wasn’t diagnosed til I was 30 and I’m 47 now. I’m now at a point where my disability might be revoked and I know I can’t work and I’m scared!

[@sol1992]

Dr la rosa and Frank Suárez very good for body general ✨

[@boydboyd3500]

Chloe, thank you for being brave to share your story and help others!! Your loved must be super proud of you!! I have fought as a 42 year-old Mom for about 12 years for answers (was finally diagnosed with Cushings after begging for a DST, even AFTER an adrenal adenoma was found 🤦🏻‍♀️ and I became incredibly symptomatic right in front of my doctors’ eyes)… you’re so right that, as patients, we have to research and we have to advocate for ourselves. I hope you’re considering a career in medicine as the world needs more doctors who LISTEN and INVESTIGATE. Best of luck to you!

[@chloek8727]

Aw, thank you so much. I am seriously considering going to medical school :).

[@Elizabeth-vq6mb]

Validating! Thank you so much. Amazing job not giving in to the medical gaslighting

[@brandym1505]

I truly don't believe that Cushing's is rare. I now know 4 people, including myself, in Southern CA that have Cushing's. It's wild.

[@luckyneko1]

I agree with you and so does my Endocrinologist.

[@DrivingaMercedes]

do you have a dr you like in So Cal ?

[@MzBrandyJ]

@@DrivingaMercedes Yes I do (this is my main account). Endocrinology I see Dr. Timothy Bailey at AMCR, and neurosurgeon Dr. Sunil Jeswani.

[@Ben-ej1xp]

I had a pituitary tumour removed 2 years ago. I've then had 2 friends who have also had pituitary tumours removed in the last year. We all live in the same town. It may be rare, but it's curious statistically from my experience.

[@sol1992]

El tumor siempre llega por estrés ya sea de mala alimentación física o mental...

[@SatuKotkatniemi]

What a great interview! Chloe is so clear and great advocate! Very inspiring and helpful!

[@teeski693]

Chloe you are awesome to share your story, thank you.

[@LiftTheVeilMinistry]

Very insightful. Thank you so much for sharing your story!

[@princessadora]

why are stats not being done on those seeking cushings testing? the majority seeking it likely have it going by the cushings groups i'm in, the symptoms they have and what they're reporting back from their appointments re: tests results. the patients know more about it then the specialists (in regards to regular endos which most are) some of us will simply die because of the endocrinologists unwillingness, cruelty & egoic ignorance towards us. something has to be done about it.

[@jenniferchatterjee8337]

Your in a Cushings group? On what platform I’d like to join some.

[@dawnmills6755]

Absolutely agree!

[@teekay8965]

I'm going to take a wild guess here and say she was eventually diagnosed by Dr. Freidman in LA (excellent), surgery at UCI with Linskey (also excellent) and she had episodic Cushings which makes sense bc she is young and active and her body was fighting hard against the high cortisol. Moral of the story, if you think you have high cortisol, do a boatload of testing, not just a single test. This young lady had TWO pituitary surgeries and that is no joke - that's a LOT to go through at her age. Strong girl.

[@Nat524Ricci]

This is exactly my situation. Cushings Disease, no remission after pit surgery, acth and cortisol still high. I am suspicious of an ectopic source. I want a BLA.

[@elaineelliott6996]

Fabulous and thanks ❤

[@EmmaTawton]

I don’t think there is a textbook presentation for Cushings Disease. Each patient story I hear is different and then every treatment is different too. Depends on how the patient responds. I have put on 130 pounds (60kgs here in Australia) and have had my pituitary and adrenal glands removed but have still not lost the weight. It has now been 16 years and I still can’t shift the weight. Unfortunately I still find that I’m quite bitter towards those patients who are back to their pre Cushings size but I guess everyone is different 😞

[@Nat524Ricci]

Dr Carling, my pit surgery failed. Praying it’s just delayed but I feel it failed. After confirmation, I want a BLA. Will be in touch soon. Thank you

[@4mandysake]

Update???

[@Nat524Ricci]

@@4mandysake failed, tumor was not removed, and I had a SECOND larger tumor show up on post op MRI. Problem is, I contracted MRSA in my sinuses during my operation. And due to that ENT has advised no further pituitary surgeries (took 9 months to fully resolve, and it left behind a chronically obstructed right sphenoid sinus) anyway I am currently on Isturisa with cortisol normalized which has been great but I know I will eventually need the BLA. Then, just when things couldn’t get worse, my metanepherines and normetanepherines and dopamine are all high, suggestive of a para/pheo tumor so we’re currently looking for that, never ends! Been sick since age 17, I am now 36. Took all these years for docs to even test me. Constantly dismissed me prior. So upsetting! I talked to Carling they said to contact back after I get my genetic testing results later this month.

[@donnaahlers1319]

Hi, is there any way Dr Carling can recommend an Endocrinologist in the Tampa Bay area? Thank you.

[@madisonhope410]

he’s in tampa, just see him or ask his office for a referral

[@muddymonkey2]

My daughter, Olivia, is a senior at UCLA as well. She has classical text book symptoms of Cushings in a major way. Her 24 hour urine cortisol came back normal as did her low dose dexamethasone suppression test. Regular fasting labs are ordered like ATCH and non suppressed cortisol.. She will get those this week. We are wondering if there are any other tests to rule out pituitary or adrenal tumors. Will not order an MRI or CT if she has no blood work is abnormal. She is seeing a doctor at the Gonda Center at UCLA. Symptoms are getting worse for Olivia over the past 3 years and even worse this month.

[@teeski693]

Can you pay cash and force them to give her an mri? I’ve had to go around insurance for my kid and just pay cash. You can price shop. Good luck. Don’t stop trying!

[@carlingadrenalcenter]

So sorry to hear your daughter is going through this. You can connect with Dr. Carling directly to discuss the details of your case by filling out the form at this link: www.adrenal.com/adrenal-surgeon

[@SatuKotkatniemi]

I hope that this does not come too late. Anyway, for anybody reading this: There is late night salive test for cushing which is much more reliable test than any other. Also, extremely easy to repeat in regular bases. I wish all the best for Olivia!

[@src4409]

There is also cyclical cushings.

[@Grahamt978]

After your pituitary surgeries was radiation ever mentioned for treatment after surgery? I’ve lived without my adrenal glands for 24 yrs, hope you’re holding up pretty well💕

[@Tig78-9]

If you are willing to share, I'm curious being that you don't have any adrenal glands, how much hydrocortisone in mg you have to take per day and what the range is considering on some days you probably have to up-dose?

[@chloek8727]

Hi Dustin, I take about 20 mg a day on average! I'd say my daily dose can range anywhere from 20-30 mg depending on what's going on in my life. Sometimes (though rarely) it exceeds 30 under more severe stress.

[@Tig78-9]

@@chloek8727 Thanks for the response. it's so interesting to hear the range of hydrocortisone needs different people have. I sometimes listen to a podcast hosted by a women with Addison's and she says that she needs 70-80mg per day and doesn't have any signs of too much cortisol in her body, and then there are others with Addison's that only need 20 mg. If you consistently exercises do you have to take more hydrocortisone?

[@monahanalla5160]

I had left adrenalectomy 28 years ago cause I had Cushing syndrome. For the last few years I had 2 adenomas on the right. Cushing symptoms for the last 4 years. My dexamethasone suppression test results are always higher than normal but serum Cortisol is Normal. Was wondering in case both adrenal glands are gone, what medication will a person be for life ? . Cortef ?

[@chloek8727]

Hi Mona, Chloe here. Yes, those who have had a bilateral adrenalectomy need to be on Hydrocortisone for life (and generally Fludrocortisone too). Let me know if you have any other questions!