Help with a Diagnosis

[kdf314]

I am a 27 year old female.  I have been had many strange symptoms for many months including:  80 pound weight gain in 3 months, swelling, joint stiffness, trouble sleeping, fatigue, headaches, lack of menstrual cycle, food cravings, sensitivity to touch, and increased facial hair.   Having lost and kept 90 pounds off for two years, I used to live a very healthy and active lifestyle.  I have seen many doctors including an Endo and OBGYN.  Tomorrow I go to see a Rhumotologist.  Here is what we do know:  my FSH and LH are low, I had elevated levels of cortisol, but they have normalized and my ANA levels are high.  I am really worried.  I don't know if not have a diagnosis or having one would be better.  I just want my life and body back.  Does anyone have any ideas what it might be? Thanks for the help!

[Sherri90049]

I just have to say that I've been feeling really down today (adrenal fatigue), and so discouraged about endos. And you guys are so funny and made me chuckle despite how depressed I am. Thank you so much! (The "endummy" term! And the picturing yourself kicking the endos in certain parts when they're saying stupid, unhelpful things! I'm going to have to remember that one!)

:) Sherri

[rumpled]

I coped by finding other people with that um, rare, disease and we talked about it and how to find doctors, pitfalls of testing etc.

Where I live in NJ, I know many people with Cushing's and most have the cyclical form. I know the docs think it is rare, but really it is just another form. All that waiting made me a lot sicker - I had docs with the same attitude - like a normal test was going to wipe out everything.

My suggestion is to dump the endummy who has not a clue and find one who will test you and get you to completion as to if this is it or not (it can be GHD or other disorders too) and get it resolved. Waiting is not a valid treatment.

[kdf314]

Hi Rumpled,

I know it has been a while, but I just wanted to thank you for your advice.  I actually found an article on cyclical Cushings that was written in layman terms.  I actually faxed it to my Endo (twice.  The first time they lost it.  Of course.)  

Although he said he "knows" about cyclical Cushings, he did say that it was very rare and we should just wait.  Wait until our next appointment - which is in October.  My symptoms, although they vary in severity, are all still present - including a lack of menstrual cycle.  

I meet with Rhuemotologist tomorrow for my follow-up visit.  I will get the results back of all the blood work.  I am not optimistic though.

I guess I am messaging you because I am worried and not really sure what to do.  I just have "a feeling" that something is off.  And cyclical Cushings seems to fit.  Its all just so frustrating.  

Any advice or even techniques for coping would be great.

Thanks

[rumpled]

Cushing's, be it full blown or cylical, needs to be treated. I had the cyclical form. I guess your endo thinks that since you don't look like a picture in a book, you deserve to suffer? There are enough papers out there now that show that the cyclical form does not convert to full blown as initially thought but is its own form, so it should be treated as is.

It takes more to diagnose as it is perceived as being even more rare than Cushing's itself, most docs do not think hormones cycle (period, anyone?) so you first have to find a doctor that knows it and will let you test.

It took me 12 years or more to get diagnosed. I did not even hear the word Cushing's until the last 2 years - I was told my problem was thyroid or an incidentaloma, which is what they called my pituitary tumor. I had to travel as no doctor near me helped me.

Treatment at this time is still surgery to remove the source - there are some medications out there, but they are not perfect yet.  Some can be short term under supervision. Sources can be pituitary or adrenal - or rarely a tumor elsewhere.

[kdf314]

Thanks for the feedback.  The Rhuemotologist took 18 more blood samples, and numerous xrays.  The Endo I have seen does believe that it is Cushings.  However, he does not believe it to be "full blown."  If it is episodic or cyclical, how do you suggest get it diagnosed? How was it done for you?  Also, can you please tell me a little bit about the treatment.  (Its very comforting to know that someone else might understand or have some information.)  Thanks!

[rumpled]

That would sound like you need to be tested for Cushing's disease/syndrome. The symptoms you are outlining are consistent with the syndrome. Since your weight has varied, you may have an episodic or cyclical form which is harder to diagnose. I had this form.

An endocrinologist is the proper doctor to see however you have probably seen endo that don't know Cushing's from their elbow - which is most of them. High cortisol does cause inflammation. I used to have really high CRP levels. Cortisol will also interfere with other hormones.