How to find a good endocrinologist.

[mlsteven]

I have elevated testosterone and DHEAS levels. My primary doctor tested it twice - once just to get a baseline, and then using a suppression test. The levels remained high both tests, so she does not believe it is ovarian, but rather something like an adrenal problem. I am going to an endocrinologist early April.

I have read a few posts that said most endos. focus on diabetes and thyroid, but don't necessarily know much about other endocrine conditions.

I have never been to an endo before, so how do I know if she is any good?? What should I look for?

[rumpled]

Congrats on having a good PCP...
Yes, most endos focus on thyroid and diabetes, and I would even debate on if they do that well but that is another discussion.
Since you have a suspected adrenal issue, your doc should run a lot of tests on you. However, be advised that some of them are very prone to lab error - renin and ACTH need to be in chilled lavendar tubes, spun immedately and frozen promptly to be accurate. Otherwise the readings are not accurate. So if the lab tech or the doc office takes all your tubes and just puts them in a bin, for sure you are being judged on faulty tests. So a way to judge is if he/she is fussy about the tests and how they are performed and if they know about the lab errors.
Tests you should probably be getting are ACTH, cortisol, renin activity level, aldosterone, TSH, bioavailable testosterone, estrodial, FSH, LH, DHEA sulfate, vitamin D, calcium. Free T3, free T4, prolactin, cortisol binding globulin...
Other things to look for in a good doc - does not dismiss on normal numbers but looks for symptoms and keeps on testing, knows the proper times for tests to be diagnostic, is not condenscending and dismissive of your symptoms and will get to the bottom of what is wrong, be it endocrine or not...
I had to travel 3000 miles to find one - they are not common.

[mlsteven]

I had no idea - that is crazy (the thing about lavendar tubes, then spun, then chilled.)
You are right that I have a good PCP, but what I had to go through with my last doctor was ridiculous.

Thank you for your advice. I will definitely be watching. I also am keeping the list of tests you wrote about.

I am very lucky to be in an area that has plentiful doctors (Cleveland - there are 2 major teaching hospitals.) However, I haven't looked into good endocrinologists there. I am hoping it doesn't come to that and that this doctor will know what he is doing.
-Megan-

[rumpled]

Er, my tumor twin (we ended up meeting on line right before surgery due to similar symptoms, started to talk a lot, and having the surgery within months, and having almost identical pituitary pathology) lives near you...
How do I say this nicely? She also traveled to LA to see the same doc that I did as she could not get care in that area. While your area is very very good for many things, it is not known for endocrinology. She continues to travel and see this doc as she has been unable to find care even after being diagnosed. Sorry. Hope you can find someone but I know of many in the area but no one seems to be happy. Unless you are florid, straight case and easy to diagnose, people are not able to get help. Hopefully your PCP can get you some good baseline tests.

[mlsteven]

Thanks for the heads up - I won't be wasting my time in Cleveland. Well, hopefully it will be a straightforward case of something.

My endo. appt. is on Monday. Wish me luck.

-Megan-

[rumpled]

Good luck!
If they diss you and you feel in your heart that something is still wrong, don't feel bad about travelling to pursue help. She also sees someone in Pittsburgh. I am going to see him in May.