Endocrinologist referral

[flutterbee]

When I took Wynter to the doctor this morning (we have the same doctor), I told her that I wanted to be tested for cushing's. I brought this up before with the rheumy - who thought it wouldn't be a bad idea - and with my GP back in June, but she had had me on low dose steroids for a while and wanted to give me more time off them to make sure it wasn't the steroids causing the appearance changes.

Today, she said that she isn't comfortable doing the testing because she's afraid that she would mess it up (have to do certain tests at certain times of the day I guess) so she is referring me to an endocrinologist. There is a practice where a doctor has just started working one day a week out of the hospital that is about 1/4 mile from my house - so he won't be full yet. Which means IF he takes my insurance, I should be able to get in quickly. Keeping fingers crossed. I'm still waiting to hear.

I'm not a doctor, but I think I have enough physical appearance and physical symptoms to warrant this test. Cushing's is treatable which is really good news, but if it's not treated it can be bad. So, I definitely think it's worth checking out with the symptoms I have.

My GP got a letter from the NIH saying that the packet would be forthcoming. So, we're still waiting on that and my GP has to write a very detailed letter explaining everything and she is working on that, too. In the meantime, I don't want to wait on this testing. I've been feeling so weak and confused/disoriented lately.

I'm so lucky to have the GP that I have. She is a blessing.

Please keep your fingers crossed that I get in quickly. In a way, I hope it is cushing's - as crazy as that sounds. At least I would then have a diagnosis and I would have something that is treatable.

 

[butterflydreams]

Good luck on getting in quickly. I hope you can get the testing done. Keep in mind though that Cushings is hard to diagnose. If you are cyclic, you can test and have numbers within range even if you have it. My daughter has had some of the tests for this, she fits alot of the symptoms but the doctor says she doesn't have it. I am not sure. A lot of the symptoms also fit PCOS, which the doctor does say she has.

There are blood tests, saliva tests, 24-hour urine tests, and also I would request a MRI. If you have Cushings that is not related to taking the steroids it can come from a adrenal or pituitary tumor. Here is a website that I found that is extremely informative: Cushings Help and Support Boards

Good luck to you and keep us posted!

Christy

 

[flutterbee]

Thanks, Christy. I had already come across that site. I've logged hundreds of hours of research on various and sundry disorders. I should have an honorary medical certificate.

I do think if it is cushing's that it may well be cyclical. Which is why I asked today about the testing because I'm in the cycle of something - whether it be cushing's or a flare of whatever else is going on. I will be sure to express this concern with the endo. The physical changes are astounding to me (I swear I hardly recognize myself when I look in the mirror), plus the fatigue, the muscle weakness which has been much more marked this past week or two or three - I've lost all concept of time - an even the extreme irritability I've had. It seemed to precede the extreme weakness that I've had. Then there's the other things - like it took me 3 tries yesterday to find my silverware. It's been in the same drawer since we moved here in December. I dunno. Prolly just another shot in the dark, but I feel it's worthwhile to check it out. At this point, I don't think we can really leave any stone unturned where I have matching symptoms.

I was also reading that there is (or is research on) subclinical cushing's which I *think* is where the cortisol is elevated, but not enough to show up on the tests, but still enough to put you at risk for things like, oh, heart disease (among other things)....which I have. I get all this information and try to put it together. Of course, with my cognitive functioning being where it is at the moment, I have to review it all several times before it makes sense so I could be getting things mixed up.

In any event, my rheumy thought it was worth looking into and my GP was more than happy to make the referral, so it must be worth looking into.

I just want answers. I don't really care anymore what they are. Just give 'em to me.

 

[Genny]

An endocrinologist's opinion of your symptoms certainly can't hurt. Good luck! I hope you can get in quickly.

Genny

 

[susiestar]

Good Luck getting in. The only endocrine guy who will see me in my entire flippin STATE has over a 3 mo wait. I hope you get in sooner. I am still many weeks out from my appointment.

 

[Star*]

Wyntersgrace,

My doctors still can't find anything wrong with me. Tell me I'm healthy as a horse. (neahhhhhhh)

But when they were looking my rheumatoid would come and go. I thank goodness for the Dolobid I have when i do have flare ups. But they tested me also for Cushings. If there was a test and you had to get 10 out of 12 - symptoms I did. I even have the hump, but they think thats from being in auto wrecks and bad vertebrae/scaring tissue.

I also considered that I had Lupus - but the tests came back a resounding NO for all of it. Not even thyroid. I'm so frustrated I now just tell myself there is NOTHING wrong with me and move as well as I can forward.

I have been following and really hope they find what ails you. It's frustrating, that when I have major blow out symptoms? I can't get into the doctor and then they subside (cycle) and I get tested and look like a dolt.

The test for the cortisol levels is gross too - you pee in acid over a period of time and then store your pee in the fridge? I THINK NOT - blech. And the smell of the (sp) vanilaromic acid? WOW....(eyes water)
=not that I was smelling my pee....but the jug is huge and the acid wreaks.

Best of luck in finding some answers.

have you checked metabolic syndrom x as well?

 

[flutterbee]

Metabolic Syndrome X is just a cluster of symptoms or diseases that increase your risk of heart disease...which I already have without having had all those symptoms. At the time of my heart attack I did not have high blood pressure, high sugar, obesity, and my cholesterol was barely elevated.

 

[Hound dog]

Heather

I'm glad doctor listend and you'll be tested. When you get to the endocrinologist be sure to ask if this testing will pick up on other adrenal issues as well. (I can't recall if it does or not)

I know this not knowing is driving you nuts.

(((hugs)))

 

[1 Day At a Time]

wyntersgrace,

I am so glad you have the referral. I love my endocrinologist, she is absolutely wonderful, and is my favorite doctor of all time. She treated me for a pituitary tumor and she did an excellent job - she also tested me for Cushings. Fortunately my tumor did not cause Cushings - but I can tell you from experience that a pituitary tumor alone can cause crushing fatigue and severe depression. They are very treatable as well. I know you will get a thorough check out. Please keep us in the loop!

 

[Wiped Out]

I'm glad you have the referral to see the endocrinologist. I hope you get in quickly and they can find out what is going on. I've read a little about Cushings as it is the opposite of what I have. I have Addison's where my adrenal glands don't produce any cortisol.

 

[TerryJ2]

Congrats on the referral. I've got my fingers, toes, legs, feet and eyes crossed for you! (It's not easy to type like this.)
Let us know ASAP when you get in for the test.