Please help!!

[Guest Donna]

Can someone please help me?  Over the past few years I have gained over 40 lbs, suffer from extreme fatigue, muscle cramps, headaches, just to name a few. I also have a hump between my shoulders. I have gone to see my primary care physician and asked about Cushing’s syndrome and she said that there’s just no way I could have this because it is so rare. I asked for a referral to see a endocrinologist and she finally agreed. After doing some research on this debilitating disease, I am convinced that I am it’s next victim. I am so scared. What can I expect from this endo appointment?

[~MaryO~]

Oh no, Donna - does this mean Dr. Zwart didn't work out after all?

I've heard very good things about Dr. F, though.  Got my fingers crossed that he's the answer for you.

[Shaw]

It's not nearly as rare as some doctors think. Honestly, most of us have bad experiences with at least one endo so that's a possibility but fingers crossed you get one that's willing to listen and will let you do some testing; push for testing. Do your research, read as much as you can before the appointment - bring pictures of your physical changes if you have them and write down your symptoms. I never saw Dr. F for diagnosis but his website and the boards were the best thing ever for me. His site has lots of good articles so I would read everything there http://www.goodhormonehealth.com/cushings-patients/ and read old postings from these boards.

[Guest Barbara]

Rare....I was told the same thing “you know how rare this is, you don’t have Cushings”. Fought for 7 years and found myself in the OR removing 2 pituitary tumors...CUSHINGS. do your research and don’t give up. Demand to be tested. If doctor won’t do it, find one who will. My doctor said she was told in medical school to “skip the chapter on Cushings aa you will never see a case in your lifetime. 🙄 It’s not as rare as they would like to think.  Good luck

[Hialeah]

If the Endo does not want to order midnight saliva Cortisol tests go elsewhere.

[DonnaFromAZ]

My family Doctor said she doesn’t see a hump on my back. Is it just me that sees it?

[~MaryO~]

Responses from Facebook:

Shauna : Heard all that for 4 years before my doc sent me to endocrinologist who took great pleasure in calling my doc to advise and ask what surgeon she should sent me too.

Robyn: I did all the research and my dr did the testing to shut me up. I was right, unfortunately, and do have Cushings. You have to advocate for yourself.

Diana :You will need a variety of tests, if she says just one test, move on.
She's wrong. Find a doctor who is willing to test and not tell you what you couldn't possiblly have.

Maxine: I heard that same bs. Get a 2nd opinion. It might save your life

Sheryl: Get them to check your cortisol level.

[~MaryO~]

I was also told that Cushing's was too "rare" and I couldn't possibly have it - way back in 1983.  It took me until 1987 but I finally got diagnosed and had pituitary surgery.

Best of luck to you.  If this endo doesn't work out get another one!

https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/

[Shaw]

I never had a hump and I definitely had Cushing's Disease. Get some tests and a good doctor.

[DonnaFromAZ]

How do you find an Endo Dr. that knows about Cushings?  I live in Tucson Arizona.

 

[Guest Nina]

Hi, don't be scared, I had Cushing's, it is rare but very treatable. Keep pushing for a diagnosis, I did my own investigation on line, took photos of before and after and my doctor was relieved we had evidence to give to the correct hospital department. Good luck, there's a lot of people out there to support you.

[DonnaFromAZ]

Thanks to all that have responded to my post. I have an endocrinologist appt. on October 23rd. I pray that he has the wisdom to help me.

[~MaryO~]

Excellent, Donna!  Please let us know how your new endo works out for you.

Best of luck!

[DonnaFromAZ]

These are pictures of me taken 3 years apart. 45lb weight gain.

[DonnaFromAZ]

 I Went to my Endo appt yesterday (prepared) I had a list of all of my symptoms and a few photos of me to show the dramatic changes that my body has gone through over a short period of time. Without my prompting, He is sure that I have Cushings. Now, to prove it. I Walked away with a long list of labs to do, including...blood, urine, and saliva. Although I already knew in my heart that this is what I had, it was still very hard to hear. I know this is not gonna be an easy road to travel and I would be lying if I said I wasn’t scared. (I’m terrified) I had a hysterectomy 4 years ago and ended up with sepsis, e-coli, c-diff, just to name a few. It nearly ended my life. I’ll keep you guys updated when I know more. Thanks to everyone that has helped me along the way and to those that will continue to do so. 

[Shaw]

That's fantastic! Getting a doctor who will thoroughly test you is one of the hardest parts of the disease. Nobody wants to be sick of have Cushing's but with a lot of us it's gets to a stage where you just know in your gut what's going on and then you have to fight with doctors to get them to listen. I hope testing is quick and the proof comes back right away so you can get back to feeling like a human again.

[DonnaFromAZ]

Thank you Shaw. The endo walked in the room, introduced himself, took a good look at me and my pictures and asked me if I had ever heard of Cushings? He told me that I was in good hands and that he would set me up with a great neurosurgeon. The tears just rolled down my face. I just want my life back! I promise never to take life for granted again.  

[~MaryO~]

This is such great news, Donna - the endo sounds fantastic.  Can you please share his info with others so that they might have a faster diagnosis, too?

Hopefully, surgery will be soon and on to remission!

[DonnaFromAZ]

Is there any way for you to post this for all to see?  The Doctor that I am seeing is Dr. Zwart. He is located in Tucson Arizona. 

   Tucson Endocrine Associates.           

       5910 N La Cholla Blvd.   Tucson Arizona, 85741.     (520) 297-0404

[~MaryO~]

Yes - I can add him to the Helpful doctors lists like this one: https://cushieblogger.com/2018/11/19/helpful-doctors-oregon/ and to the Cushing's MemberMap at https://www.google.com/maps/d/u/0/viewer?mid=1NLdGqTJyaJOvxegUnUR_slLRcYyMsVbJ&ll=3.8633242368885425%2C-113.44413728043901&z=1 in the section for doctors.

Thanks so much!

[DonnaFromAZ]

I have decided to stop wasting my precious time with these worthless Doctors. I have an appt in 2 weeks to see Dr F. In California.

[DonnaFromAZ]

This Endo doesn’t believe in cyclical Cushings.  How high does your salivary cortisol have to be to be considered diagnosable? My last tests were .99. & 1.69 The range is .09-.90.     If Dr F can’t help me, I don’t want to live anymore. I can’t spend my whole life sleeping and suffering. I’m literally watching my life pass me by.

[~MaryO~]

I'm so sorry to read this, Donna

I'll never understand how a doctor can't "believe in" a disease.  Boggles my mind.

I sure hope Dr. F can help you - he's helped so many others over the years.  Please keep us posted.

 

[DonnaFromAZ]

I received my dictation from Doctor F.. I pray that I am on the road to a diagnosis. I don’t know how much more of this I can take.

[~MaryO~]

It sure sounds like you're on the right track!