And It's About Time There Was Some Support For Cushing's!
Hi Everyone!
My name is Stasia and I am 34 years old. I was diagnosed with PCOS about 8 years ago. I was having irregular periods and high testosterone. The only problem with the diagnoses now that I look back is that infertility was not an issue...I have 4 boys! This past fall, I went back to my obgyn because I was having headaches (never had headaches before) and my hair on my head was REALLY falling out and I started laser treatment on my face! I was sick of shaving...how embarrasing! They did some labs and a few days later I received a call from the OBGYN saying that I needed a STAT CT scan for my adrenal glands. I still had the high testosterone but the concern was that I have a high DHEAS level. The scan was normal so they sent me to a Reproductive Endo to talk about what could be cause of the high DHEAS. When my internist heard that the OBGYN sent me to the repro endo he asked if I was trying to get pregnant...that is a joke...I tell everyone that I would be happy to sell my uterus on EBAY at this point! :)LOL!!! The repro endo did a cortisol level on me 8 am draw and it was elevated. Then we did a dex test and that did come back normal. Frustrated with the lack of communication with the repro endo I asked my internist if he could continue my care....
Went to see my internist and had a 24 urine and the cortisol was elevated. They did a redraw on my dheas and testosterone which of course were high. The headaches are EVERY day and my hair is really falling out. They gave me Vicodin. Finally after pushing they did a MRI of the Brain. The medical assistant called me on Tuesday and told me that it was normal and that they need to do an ultrasound of the ovaries but I had that done in Sept! Do they see the pituitary on a MRI of the brain or do I need a special test? Any one know that? So....I asked for the doctor to call me back so I could discuss the results and noone has called me back.
At this point I am VERY frustrated with everything! I have a ton of symptoms of Cushings...buffalo hump, big midsection that I blamed on having 4 children, skinny legs and arms, memory loss, pains all over, do not sleep at well AT ALL have complained of sleep issues for the past 8 years(No wonder I am tired), huge anxiety and panic disorder, depression, lack of libdo,headaches, chest pain at times...comes and goes. Have no idea what the heck is going on...all the doctor seems to be doing is masking the problem. Here...have some ativan....Here...have some Vicodin. I am sure other of you feel the same way. I did call Cleveland Clinc, Mayo and University of Michigan and do have an appointment on March 6 2007 at University of Michigan. I can't believe that I can't get in any sooner.
Any help and encouragement would be appreciated...I feel like I am alone and noone is taking me seriously. The doctor did mention ectopic cushings.
Thanks for listening and thanks for the support!
Second version:
Hi everyone! Here it goes... I am 34 years old and a mother of 4 boys. 8 years ago I was diagnosed with PCOS. This fall, my hair really started to fall out and I was experiencing headaches for the first time in my life. I went to see my OBGYN about it and they did some labs. I received a call a few days later stating I needed to go get a Stat CT scan done of my adrenal glands. I questioned where that came from and they stated that I had abnormal high lab values of DHEAS. The scan turned out normal. Phew! The OBGYN then referred me to a reproductive endrocronologist. Why a repro...I don't know! When I saw him I told him that I had been doing some research of my own regarding the elevated DHEAS and had stumbled on THIS site regarding Cushings. I came armed with pictures and a whole page of ATYPICAL medical conditions. He ordered the cortisol blood draw(between 6-8pm) and it did indeed come back elevated.
I thought I was on the right path and was on my way to a diagnoses....not so fast! The endo doc that I saw took there sweet time in getting back with me and I felt like I was going nowhere! I ran into my internist at my place of employment...gave him the run down and asked if he could take care of me...the first thing he questioned while I was talking to him was if I was trying to get pregnant...I said "NO WAY....I am about ready to sell my uterus on ebay! We are SO done procreating!". He questioned why in the world was I sent to a reproductive endo...I had no idea! Anyways....I met with him a few days later in his office and he did the 24 hour urine on me...sure enough...elevated! I am having headaches EVERY day at this time. He threw me on some Vicodin ES and some ativan. Nothing like masking the problem...the internist FINALLY ordered a MRI of the brain...just found out that is normal...requested for the doctor to give me a call regarding the MRI and he NEVER had called back!
So...as you can tell....I am slightly:) frustrated...he did mention ectopic cushings but no other tests have been ordered. He wanted to refer me to his partner that is in the same office...I guess that he is an endoronologist but is not certified to get his opinion on what my doctor should order next...I have to meet with this guy for 15 minutes in the end of JANUARY...that doesnt make sense! I do have an apt at the University of Michigan in March. This doctor at U of M specializes in Cushings. Maybe I will have better luck!
My symptoms are: hair is falling out TONS, I have tons facial hair that I am going through laser treatments now, weight gain in my midsection, very thin arms and legs, buffalo hump(every notices it), anxiety, depression, Tired! , don't sleep well- have had sleep problems for 8 years-, aches and pains, insulin resistance, blood pressure is goofy, don't heal from bug bites, allergic to latex,Fatty liver, round face, and abnormal periods and no libdo.
PHEW!!! So....I hope to find out what is going on soon! Does anyone know if there is a corilation between elevated cortisol and dheas and pcos? I just can't help but think it has to be Cushings...I am so NOT infertile and that is a huge part of PCOS! LOL! 4 beautiful boys I have!
Thank you for listening! Thank you for such a GREAT site...I am glad I stumbled across it! Best of luck to everyone out there! I too hope to find some peace with everything! Take care!
Stasia
