Endo visit

[Jjpd]

So after 10 years if I finally went to see an endocrinologist.

for the most part I can see why everyone has told me not to waste my time

Very nice lady, but
-dismissed my over 30 Low saliva cortisol results- saliva is not a reliable way of testing cortisol
-dismissed all of my high rt3 results- doesn’t even know why I was tested for that with my symptoms
- dismissed my adrenal aches and stabbing pains- not possible, must just be the muscles in the back hurting

so no real progress

thinking of going to a neurologist
All my problems started with amphetamine abuse, during a time when I had undiagnosed Lyme

the one strange symptom that I don’t hear about with most other cfs/ adrenal people is the turtling of my penis, when I get pem or just feel in general lousy

makes me think there is some kind of neurotransmitter issue going on

 

[Mary]

@Jjpd - that's too bad! I saw an endo for the first time about a year ago (after being sick for 20 years) and it was a waste. He told me ME/CFS didn't exist, and that there would never be any research showing it was real, because it doesn't exist (?!?) It was worse than a waste of time. I did see another endo last summer (he was highly recommended) and he was nicer, I think basically humored me about ME/CFS. Anyways, he wasn't much help either.

You might have better results with a naturopath or functional/integrative medicine type doctor, who should take your low saliva cortisol results and high rt3 results seriously. I'm sure there are neurotransmitter issues going on with ME/CFS. Look at all of us who have such battles with insomnia!

I've never seen a neurologist but haven't heard good things about them in general. If I were you, I'd do a post asking about others' experiences with neuros.

I've had very good experiences with chiropractors who do muscle testing. They have helped a lot with my adrenals and several other issues. If you want more info, let me know -

 

[Jjpd]

Thank you Mary
I’ve been seeing integrative dr or drs for years now
Thought maybe going to an endo and getting an acth stim test or pituitary or adrenal mri might show something.

fingers are still crossed, that after the baseline bloodwork she ordered, she’ll order some additional tests

 

[Mary]

@Jjpd - good luck! I hope she ends up helping you. (FYI, if you put the "@" sign in front of a member's name like I did with you or like this @Mary, the person will get an alert that you have tagged them )

 

[Likaloha]

So after 10 years if I finally went to see an endocrinologist.

for the most part I can see why everyone has told me not to waste my time

Very nice lady, but
-dismissed my over 30 Low saliva cortisol results- saliva is not a reliable way of testing cortisol
-dismissed all of my high rt3 results- doesn’t even know why I was tested for that with my symptoms
- dismissed my adrenal aches and stabbing pains- not possible, must just be the muscles in the back hurting

so no real progress

thinking of going to a neurologist
All my problems started with amphetamine abuse, during a time when I had undiagnosed Lyme

the one strange symptom that I don’t hear about with most other cfs/ adrenal people is the turtling of my penis, when I get pem or just feel in general lousy

makes me think there is some kind of neurotransmitter issue going on

Me too...what a waste of time....

 

[Likaloha]

Waited a long time to see an endocrinologist, especially about my very low human growth hormone levels.... I may as well have spent the time resting or reading....despite blood tests with almost no human growth hormone level present, it is 3 months later and have heard nothing back about any abnormal test results!