Tag Board

Check out the New Message Boards and the Official Cushing's Chatroom
Note: Generally, we are patients helping each other, not medical staff.
Always contact qualified medical personnel for diagnosis and treatment.

Sun, 8:20PM EST: Jade: :

Tue, 5:18PM EST: ajmsr: Because of lactation symptoms, a friend was tested and her prolactin level was found to be elevated (57.8). She was advised to was advised to wait 4 to 5 months to be tested again "because the tumor is too small at this time to proceed further". We are in the northwestern Chicago suburbs. Does any one have any advice? We are uncomfortable with the "wait" advice. Where is there a pituitary clinic or specialist that one would recommend?

Tue, 2:23PM EST: sherryC: Trish-this site has saved my life....and many others

Tue, 1:50PM EST: 5: blah blah blah

Tue, 10:22AM EST: no_1_momlandj: Kris, I've only been poking around on this site for a litlle while now. I found the guest chat with Dr. Friedman last night and it was VERY informative.

Tue, 6:59AM EST: kris: What test is the most accurate in finding out if one has cushing?

Tue, 2:10AM EST: zaida: why do you have problems going to sleep

Tue, 1:44AM EST: no_1_momlandj: OHHH, I see!! Well shoot!! Another night of not being able to sleep and now nothing to do

Guess I'll lie down again for awhile and maybe I'll get lucky.

Tue, 1:44AM EST: no_1_momlandj: OHHH, I see!! Well shoot!! Another night of not being able to sleep and now nothing to do

Guess I'll lie down again for awhile and maybe I'll get lucky.

Tue, 1:43AM EST: no_1_momlandj: OHHH, I see!! Well shoot!! Another night of not being able to sleep and now nothing to do

Guess I'll lie down again for awhile and maybe I'll get lucky.

Tue, 1:35AM EST: Mary: The message boards are on a different server than the rest of the sites. That's why only the boards are down.

Mon, 11:59PM EST: no_1_momlandj: I can get everywhere else, just not the message board...very strange

Mon, 11:46PM EST: trish: I can't get there either. this site ****

Mon, 11:44PM EST: no_1_momlandj: Anyone else having trouble gettin to the message boards? Had to reboot and now I keep getting "page cannot be displayed'

Mon, 8:31PM EST: mertie: If you'd like to email me, you can at loper@chartermi.net. Where do you live?

Mon, 8:26PM EST: mertie: Are you seeing an endocrinologist?

Mon, 8:08PM EST: gina: My Dr.just seems to be very non-chalant about this since he mentioned it..I have done 2 sets of 24 hour urine testes..one of which was lost, and the other the numbers were totally haywire..they think the lab messed up somehow.

Mon, 8:04PM EST: mertie: Hi Gina, It's understandable to get a little grouchy in that situation! I would suggest going into the forum, looking around at the different boards, especially checking out the the helpful doctors list. There is a wealth of knowledge on this website and you will figure out where to go from here. A lot of us know exactly what you are going through! Welcome.

Mon, 8:00PM EST: gina: anyone have any suggestion..sorry if I seem a bit ornary!!

Mon, 7:59PM EST: gina: I have spent more time a the doctors...and I feel I have gotten nowhere!! They just keep treating symptoms..instead of finding the actual http://problem.My Dr mentioned cushings..I have all the clasic signs. I'v gained 40 pounds in 6 months (froma siz 5/6 to a 14), i have high blood pressure, high blood sugar levels, low insulkin levels, trouble sleeping even though I am extremely tired, excess hair on my face, hypothyroidism. I am on medication for high bp and thyroid right now.

Mon, 1:32PM EST: Sue: i'm looking for fellow cushies in the New York area so that we can meet or chat. I had surgery in May of 06... it can be hell can't it?

Mon, 12:00PM EST: Hollie: Mary, I have an appointment with Dr. Salvatori at Johns Hopkins. I'm hoping he can give me some suggestions or can help me better. Isn't he who you went to and if so, did you like him?

Mon, 11:38AM EST: Hollie: Mary, I have an appointment with Dr. Salvatori at Johns Hopkins. I'm hoping he can give me some suggestions or can help me better. Isn't he who you went to and if so, did you like him?

Mon, 11:37AM EST: Hollie: Mary, I have an appointment with Dr. Salvatori at Johns Hopkins. I'm hoping he can give me some suggestions or can help me better. Isn't he who you went to and if so, did you like him?

Sun, 10:23PM EST: Mary: Sarah, ask away! It's best to post questions on the boards. You will find lots of knowledge and support here.

Sun, 6:58PM EST: Sarah: Hi I do not have Cushings but I am on Prednisone and I have some major questions

Sun, 1:14PM EST: hollie: It's been 2 years since they removed my left adrenal gland and ever since then my right adrenal gland or my pituitary gland isn't functioning. I still feel very fatigued, am on 15 mg of hydro in the am and 5 mg in the pm. I still have symptoms of cushings and very weak joints and muscles. Anyone else's glands not functioning yet after surger? My email address is hollie_clem@merck.com for any help or insite on this.

Sun, 1:05PM EST: hollie: Anyone still there?

Sun, 12:28PM EST: Hollie: Anyone out there today?

Sun, 1:42AM EST: no_1_momlandj: If so, I'll be in the chatroom

Sun, 1:41AM EST: no_1_momlandj: I can't sleep. Anyone feel like chatting?

Sat, 12:45PM EST: yammy: I would really appreciate some feedback. My mom is 81 years old and has been experiencing for the past 5 weeks episodes of fainting, rapid heart rate, spikes in blood pressure with loss of vision. She has been admitted to the hospital 5 times. The CT did not show any abnormality with her Adrenal. I e-mailed Dr. Knwar and he is suspecting Cushings. Has anyone had similar problems that can add light to this problem? Help!!!

Fri, 2:35PM EST: Krystine: MaryO - THANK YOU so very much!!!!! XOXOXO Krystine

Thu, 7:54PM EST: jomama: could you email me when you get in. will be on and off puter the rest of the night. I have some questions for you and am a little shy about posting on the regular boards.

Thu, 7:52PM EST: jomama: Maryo are you in this chatroom now?

Thu, 7:44PM EST: MaryO: Koziol. room 644

Thu, 7:22PM EST: Krystine: Sue, Just wanted to wish you all the best and let you know that we are all praying for you! Take care Darling!!!! Your support network here is VAST!!!! XOXOXO Krystine & Ken & Wuss E. Katt

Thu, 7:04PM EST: Krystine: MaryO, tried to send an email to Sue - but it required her surname & Rm #....... Help? Thanks!

Thu, 6:53PM EST: MaryO: Yet another new update on Sue in Sending Prayers!

Thu, 12:35PM EST: MaryO: New update on Sue in Sending Prayers!

Thu, 12:35PM EST: MaryO: JoMama - do you have a date for surgery?

Thu, 11:49AM EST: jomama: I don't know if anyone is here today, couldn't get on last night. I just have a simple question. I have had an mri and it was determined then that i had a pituitary adenoma.

Thu, 11:48AM EST: jomama: I don't know if anyone is here today, couldn't get on last night. I just have a simple question. I have had an mri and it was determined then that i had a pituitary adenoma.

Wed, 8:57PM EST: MaryO: Anyone who comes in now please join us in the main chatroom at http://www.cushings-help.com/chatroom.htm

Wed, 8:56PM EST: MaryO: Best of luck to ShellBell

Wed, 5:47PM EST: shellbells aunt: my neice had her pituitary gland removed today due to cushings desease. Please keep shellbell in your prayers

Wed, 5:08PM EST: MaryO: Update on Sue now available!

Wed, 2:55PM EST: sue: I have underactive thyroid for one year remain3 stone overweight I have swollen feet hands, aching joints knees, wrists, finger and hips mainly,depressed,lethargic and breathless, weight is under my bust and upper stomach. Endocrinologist said he will do blood tests for possibly Cushings syndrome, or he may increase my Levothyroxine from 125mcg to 175mcg he also wants me to have an ECG and a chest xray. Sue

Wed, 2:54PM EST: sue: I have underactive thyroid for one year remain3 stone overweight I have swollen feet hands, aching joints knees, wrists, finger and hips mainly,depressed,lethargic and breathless, weight is under my bust and upper stomach. Endocrinologist said he will do blood tests for possibly Cushings syndrome, or he may increase my Levothyroxine from 125mcg to 175mcg or he may try me on T3 medication with levothyroxine, he also wants me to have an ECG and a chest xray as I am exceedingly breathless. Sue

Wed, 12:12PM EST: sadkins: I should have clarified that my mother is in her early 70's, had been physically active until the onset of cushings (probably about 2-3 years ago, but now is unable to stand from a squat position. Any insight into realistic post surgical expectations would be greatly appreciated. Thanks

Wed, 12:03PM EST: sadkins: My mother is having both adrenal glands removed soon. Over the last few year she has lost significant muscular strength in her thighs and triceps due to cushings. Post surgery and with appropriate hormone replacement/exercise, what can she expect in terms of the ability to regain her strength and return to her prior body weight?

Wed, 3:15AM EST: sister21: hello I am new!!!! My name is Nicki and I think I have Cushings.

Wed, 12:56AM EST: WORRIEDWIFE: SHOULD YOU ASK FOR CERTAIN TESTS TO CHECK LEVELS CORTISOL? AND HOW OFTEN IS THIS DONE?

Wed, 12:51AM EST: MaryO: If your whole pituitary is shrinking, that's not good. You need your pituitary gland, or meds, to do its jobs. The pituitary controls all the other glands. I thought you'd said that your tumor was shrinking.

Wed, 12:31AM EST: WORRIEDWIFE: APRIL '99 MY HUSBAND HAD A PIT TUMOR REMOVED NO PIT FUNCTION PROBS. A FOLLOW UP MRI AUG '05, DISC OUR 1ST SURGERY UNSUC. SEPT '05, A REMOVAL S ATTEMPTED (NOSE), MAJOR BLEEDING, UNSUC. A 3RD SURG OCT 05 ANERUYSM NEAR TUMOR. 4TH SURGERY TRANCRANIAL WAS SUCESSFULL ON NOV 15TH. MOST TUMOR REMOVED,NO VISION PROBS, PIT IS NOT WORKING, HE'S ON DECADRON. HE'S EVERY SYMPTON LISTED. I'M SURE HE HAS CUSHING. IN MISERY. NEXT EXAM IS APRIL. HELP!

Wed, 12:26AM EST: betz: I have a doctor's appt. this Friday. I want to mention cushings to her. Do you think I should leave it alone since the pituitary is shrinking.

Wed, 12:22AM EST: MaryO: sounds like it's going in the right direction, at least. hopefully, your symptoms are improving, then. Cushing's tumors have to be removed, whether they're pituitary, adrenal or ectopic, because so much damage is done to the body by the excess cortisol

Wed, 12:18AM EST: betz: I have had an MRI every year since it was diagnosed. It has gone from 16mm to 12mm. so I guess they are not that concerned about it.

Wed, 12:17AM EST: MaryO: Betz, Cushing's Disease is caused by a pituitary tumor. I'm surprised you haven't had yours removed.

Wed, 12:16AM EST: MaryO: Terri, if you're still here try not to worry too much. Many of the members of the message boards, including me, have had pituitary tumors removed. We all know it can be very scary, though. Best of luck - try to join the message boards or come to the chat Wed night at 9PM eastern in the main chatroom at http://www.cushings-help.com/chatroom.htm

Wed, 12:15AM EST: betz: I have had a pituatary tumor for the past five years. Lately I have been reading up on cushings disease. The symptoms sound alot like mine.

Tue, 11:51PM EST: TERRI: I ALL I THINK I HAVE CUSINGS BECAUSE THEY FOUND A TUMOR ON PITUITARY GLAND AND I HAVE ALL THE SYMPTOMS IM SCARED. I DONT KNOW WHAT IS GOING TO HAPPEN

Tue, 6:26PM EST: Nona: Hi Krystine -- MaryO keeps us up to date. Thanx, Mary!

Tue, 6:25PM EST: MaryO: Lest anyone be confused - I posted that link for people to send Sue good wishes and so on while she's being treated in the hospital - not to ask for advice or anything. Sorry if I was misleading.

Tue, 4:57PM EST: Krystine: MaryO to the rescue!!!! Bless your heart Mary! Thanks!

Tue, 4:35PM EST: Sara: Will do. Thank you bunches!!!!

Tue, 4:33PM EST: MaryO: Send Sue (SuziQ) an email at the hospital http://www.footehealth.org/body.cfm?id=649&oTopID=649

Tue, 4:32PM EST: Sara: Yeah, that's where I saw it and I couldn't help but cry. I felt just like I was looking at myself.

Tue, 4:31PM EST: MaryO: Maybe you saw the show on Discovery Health? Sharm, the woman interviewed, is a long-time member of the boards, too.

Tue, 4:30PM EST: Sara: That would be SOOO great, Krystine. I just need to know what direction to go now that I have this information.

Tue, 4:29PM EST: MaryO: There are several people from the boards from OK. Actually, National Cushing's Awareness Day is going to be celebrated this April in OKC with Senator Inhofe and several doctors, many patients from around the country.

Tue, 4:25PM EST: Krystine: I believe there is another lady that we chat with (Wednesday night chat room) who is from Oklahoma. I'm not @ home right now - but will check and pass on her email address to you and vs. - if that is okay with you.

Tue, 4:24PM EST: Sara: No, i haven't. I just happened upon this disorder yesterday.

Tue, 4:23PM EST: Krystine: Sara, have you seen an endochronologist? and been tested?

Tue, 4:22PM EST: Sara: Like some sort of miracle I stumbled across a woman's story of getting diagnosed with cushings. I've researched the syndrome and it so accurately describes me that I'd swear someone had looked inside me and written down everything that is wrong! I was wondering if anyone knew any good physicians references. I live in Oklahoma, and I'm not even really sure where to start with all of this. Any help would be sooooo greatly appreciated. My email address is punky_bruiserrr@yahoo.com.

Tue, 4:22PM EST: Krystine: Peter, I have had a BLA (bi-lateral adrenalectomy) and am living proof that you will survive! Your surgery will be better cause you will have one functioning adrenal gland! You are so lucky! Good Luck! Join us Wednesday night in our chatroom and ask us as many questions as you can think of - someone will have the answers!

Tue, 4:22PM EST: Sara: I'm 24 and i've been suffering with the symptoms of cushings syndrome for 8 years now, gradually becoming more prominant and debilitating. I'm completely miserable and I live the life of a typical 60 year old woman. Within the past year my symptoms have skyrocketed. I've been diagnosed with a number of illnesses - nothing helps.

Tue, 3:14PM EST: cheryne1963: hello imnot sure if im doing this write

Tue, 2:53AM EST: peter1973: can someone contact me at mflynn120@comcast.net i have a tumor on my adrenal gland that needs to come out and the doctor hasnt said yet but i was wondering if it sounded like cushings and if i should get this taken out or can you live with it because i am terrified about surgery

Tue, 2:50AM EST: peter1973: hello is anyone here i am in the chatroom please i really need too talk with someone

Tue, 2:49AM EST: peter1973: hello is anyone here

Tue, 2:45AM EST: peter flynn: am i doing this right

Tue, 2:45AM EST: peter flynn: anyone here i have a few questions

Tue, 2:43AM EST: peter flynn: hello

Tue, 2:09AM EST: Jade4u: Hi Frances! I'm so sorry to hear that you're sick, but you'll find lots of love and support here. Please join us on Wednesday nights at 9pm Eastern for our weekly chat. We'd love to get to know you better! : )

Mon, 11:12PM EST: Frances Higgins: Hi! I'm 48 yrs. old and my Dr. found a tumor on my adrenal gland. I've been struggling with terrible acne, depression, anxiety, and very high blood pressure. I found your site and read some of the posts. Everyone seems very caring and supportive. I almost forgot, I have the "buffalo hump" and the "purple strie" on my back. No energy, and I can get very nervous. If anyone wants to write me I would love to hear from you.

Sun, 2:06AM EST: Natalie F: I was thinking more along the lines of MaryO for president!

Sun, 1:36AM EST: Natalie F: I was thinking more along the lines of MaryO for president!

Sat, 8:04AM EST: JenS: I already did!

Sat, 7:49AM EST: Diane: I wanted to vote for Gus - he is such a cutie - but couldn't as not resident in the U.S. Get voting everyone!!!!

Sat, 2:34AM EST: ChatiCat: I voted for Gus! He is such a cutie and a very special little guy for the work he does.

Fri, 10:26PM EST: jaimie83: Dont Forget to Vote for Karen's dog Gus at http://www.dogshowusa.com !!!

Fri, 12:45AM EST: Krystine: Now that Gus (their dog) is with her - she should be at peace and quiet (loopy but quiet).

Will update you when we get more information. Night Y'All.

Fri, 12:43AM EST: Krystine: Hello everyone, Update on Karen - she has been moved from ICU to a private room; however, NO VISITORS or phone calls - per OHSU Drs.!!! Absolute silence and bedrest...... We are trying to support poor Bob - all alone here with Karen. Must be hard. Keep those prayers coming!