Feeling Discouraged about Diagnosis Process

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I am curious about peoples diagnosis experiences? Mine has been incredibly painstaking and it has me feeling incredibly frustrated and frankly very confused and in the dark. How did people cope with the lengthy process? I am finding myself become more and more depressed. 

Heres my very shortened story...

I began feeling "off" about a year ago and after months of doctors visits, tests, and being dismissed it felt like a breakthrough when I was finally referred to an endocrinologist for the possibility of cushings. I am a 23 year old woman and prior to the onset of my symptoms I was living an incredibly healthy an happy life. I was always very slim, athletic, and full of energy but this disease has stripped me of everything that makes me myself. I finally completed my 24 hr urine cortisol tests and have incredibly elevated levels (it honestly came as a relief to finally get an abnormal test result as I have been feeling ill for so long and my doctors were about to give up on me). Although now I am finding it frustrating to continue to keep things moving along. My doctors are taking an incredibly long time to get back to me since my results have come in and just keep telling me to "stay tuned for further instruction." I am feeling really helpless and discouraged right now. I do not know what it is taking so them to move forward and continue to get the tests done that I need in order to move forward to treatment and being healthy again!!

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14 Replies

  • Posted

    If the doctors dont know what to do it is because they dont know what to do

    You are lucky because at least you know know you have cushings and maybe you can see a specialist about it

    I also know how frustrating it is to wait so if you can you might require to see an endocrinologist who is familiar with Cushings

    Sometimes it might be necessary to find extremely qualified doctors to help you

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  • Posted

    Ur not alone. We have all felt like that at some stage of the process. Ru havin many of the symptoms of Cushing’s? Have they given u a definite diagnosis of Cushing’s yet? 

    I would advise u go back to ur gp or ring ur endo sectary an see if there is an appointment made for u? It is unfortunately a long process an there will be many tests when they officially diagnosis u because then they need to be sure of the source. U need to just try an keep ur self positive (hard I know, promise I’ve been there) i was very like u, well an active an it was a different story as time went on. Just get on to the doctors, go private if u must because it is ur health at the end of the day an it is worth it. I had to do it also an if I hadn’t I’d have waited much longer. Do keep us updated. An try an keep the chin up. 

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    • Posted

      No, I have not gotten a definitive Cushings diagnosis. All of my doctors doubted me but I was having many of the classic symptoms; weight gain (especially abdomen and neck), moon face, stretch marks on thighs, hair growth, extreme fatigue/weakness, headaches, complete loss of menstrual cycles. Everything added up but because I didnt look like a "classic cushings patient" my doctors didnt think it was possible. Yet I got my 24 hour urine cortisol tests back and cortisol levels are off the chart. But now it is just taking forever for my doctor to take the next steps. They have barely communicated with me in any capacity....frustrating. 

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    • Posted

      Well my best advice is for u to ring ur doctors secretaries an keep ringin till u have appointments an answers. Cuz u have a lot more tests ahead of u if they confirm Cushing’s. I wish they would stop thinkn it not possible cuz anythin is possible. Pleas don’t give up hope or heart. U are ur number one advocate so push for urself. Cuz no one else will. Take it from us that know. But u have to keep the head up an u will struggle an it will be hard. But if u get sorted ur winning. But u have to keep fighting for urself. We all got there an u will feel well again but keep pushin! An if u have questions wer all here to help best we can. 
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  • Posted

    Just wanted to write to help you to cope ....even if it’s just a little bit. 

    I did not get diagnosed with Cushing’s Disease until I was a walking textbook case. I doubled my weight and, literally had every symptom you could possible have.  I suspected something was “off” years before anyone even considered Cushing’s.  My cortisol was never tested. 

    Anyway.....I got the diagnosis in November of 2002.  They did all kinds of tests and an MRI showed a 5mm pituitary tumor by December. Every single test proved I had the disease....I had full fledged Pituitary Cushing’s Disease, had terrible diabetes, weighed 300 pounds...... my resting heart rate was skyrocketed. My muscles were exceedingly weak.....I looked and felt like a huge, deformed monster. I was dying. 

    The doctors, even with all this, wanted to repeat all the tests again....and then a third time. 

    I did not have surgery until 3/3/2003. Those 4 months of waiting were horrendously challenging and Ivreally, really learned how to learn to be patient. 

    You will get through this! Thank God, there is much more knowledge about this disease now than when I went through it....also, social media and the Internet is awesome to educate yourself and to hear about others who have been through this. 

    You are young and will heal and you will get on with your life. I probably started having Cushing’s symptoms ten years before anyone suspected it. So, it is a good thing that they caught you early! I was VERY athletic before the disease knocked me down. It was extremely humbling to become so ill and weak and to gain all the unusually distrubuted weight. 

    Today, I am still Cushing’s free and feeling a million times better then before surgery. I recovered and you will too. I never, ever thought I would get through this. I never thought I’d feel better or normal again. But believe me....it is a miracle how time can move in and how you DO get to the other side of this nasty disease. 

    You will have your whole life ahead of you once this is over. Patience will be your friend right now, though. But, as others have advised you....be an advocate for yourself and do the best you can to educate yourself and ‘push’ the doctors to keep your health and YOU as a priority as much as you can. 

    My doctors and neurosurgeon were all very good and knowledgeable...yet, they went a bit slow and admitted to wanting to be careful and very sure before moving g forward to surgery. 

    I wish you the best and please know that you will look back on this one day and it will be but a blip of time in your life. Not to diminish what you are going through now ....asI know that it is like hell on Earth dealing with Cushing’s. But, you can recover from it and be healthy and ‘normal’ again. 

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    • Posted

      Thank you KarenNY! I was hesitant to use any of the online forums to talk about this but its sooo nice to be able to reach out to people who have been through the same thing and hear their stories. 
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  • Posted

    Hi Blueskies,, 

    I understand how you feel. I was bounced around different doctors for over a year before they began testing me for cushings. That in itself is a long process. I had 24 hr urine, saliva test, dex test and one I cant remember. It took some time because on some you had to wait a certain amount of time before doing another. Finally, after about 6 months of every test coming out positive, they agreed i had cushings.lol  Then they started trying to locate it. Luckilly this was quick for me as others have had a long process as well. I had a tumor in my left adrenal. With this disease you must learn patience because everything is slow pace (except for the symptoms). I finally had surgery in August  (patience is highly needed for recovery) and am doing much better. Im almost off HC and all my symptoms are practically gone. You will get there!!!!

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  • Posted

    Hi hun , I feel your pain I seem to have cyclical Cushing I saw many doctors who have ridiculed me not believed me etc etc this will be 8 years I have had this for , I eventually paid and travelled to see a specialist who noticed my cortisol was a bit off ordered more tests and the urines were fine but morning cortisol and dexamethasone didn’t suppress fully he recommended I get sent to barts  in London specialist in Cushings but they are overrun and sent me to somewhere closer as I’m not from the area I don’t hold much hope because from what I read they are not specialists where I’m being sent I’m devastated I dunno how many hoops I have to jump through it’s a joke no one knows what there doing with cushings ! This has destroyed me , my husband walked out cause manifestations of this and me never seeming to get anywhere with drs it really has ruined my life I feel your pain unfortunately my story is not uncommon after 8 years of not feeling like me I’m so over it ! If you can afford it pay to see a specialist I can give you names depending on where you are 
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  • Posted

    I’m right there with you. I just got back from my endocrinologist appointment and more labs came back abnormal. Today I had high serum and 24 hour urine cortisol. I’ve been feeling sick for years but only since this March did I start having cortisol checked. I started rapidly declining, losing my hair (I’ve lost massive amounts now...it’s so depressing) and all my vellus hair got really long all over my body and face. Got diagnosed with pcos, had other endocrinologists dismiss me and my symptoms as stress and ignore my cortisol tests. Now I’m seeing someone at the pituitary center ar Sloan Kettering. I feel hopeless because now I’m still waiting on midnight saliva tests even though I have abnormal urines, etc. I just want this process to end. I haven’t felt like myself for years and what’s scaring me is that I have now lost weight. A lot. I only had gained like 30 lbs in the last couple years but now I’m 103lbs after cutting carbs and sugar. Still have all my Cushing symptoms though and they’re worse. Now I’m gettung infections easily, prediabetic, insulin resistant, balding and getting body and facial hair. Muscle weakness is the worst it’s ever been. I have to do more testing now too. She said in 3 months I’m retesting! I don’t think I can last 3 more months. I’ve had a clear mri and abdominal ct scan. I’m worried it’s ectopic but my dr said my ACTH would have been higher and doubts it. I just want this nightmare to end. 
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  • Posted

    Hi I do sympathise with you.  The diagnosis part is so long and difficult to get through.  Don't forget that most GP's will never have seen a Cushing's patient before, we are that special!  I think what you said about actually finding something wrong is so true.  Both my GP and I cheered when my Cortisol level came back high.  It took 3 years for me to finally be diagnosed with Cushings and the relief at knowing that there was some reason for me to feel so awful was incredible. Be prepared there will probably be more tests so that the Endocrinologist and the surgeon know exactly where the tumour is.  Please keep in touch and we will all try to be as honest and as much help as we can be.  We always tell it like it is!

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