Has an Endocrinologist helped anyone - my doc wants to refer me, but I'm hesitant ..?

[Bansaw]

I've a complex history of PTSD and Lyme hitting my life at the same period of time years ago. Probably leading to CFS etc..

My doc says my pituitary gland (in terms of hormones, based on blood tests) may not be working properly and wants to refer me to an Endocrinologist.
I'm skeptical what he can do for me.

Has anyone found any benefit from seeing an Endocrinologist?

 

[linusbert]

i met one which was the best doctor i had on my odysee.
but most other endos were morons. only neurology is worse.

sadly he couldnt do much for me in the long run due to his referals not doing their jobs.
but he had good ideas and did a lot of checks.

 

[Alvin2]

I have several hormone deficiencies.
The key is get an Endo that understands ME is not psychosomatic (or knows nothing about it) and that they can only address the hormone part if you are deficient.
I am on several treatments becasue of it and am still working on some other deficiencies found.

That said one can argue that you should not even mention you have ME, let them think you are a normal patient and then they won't get caught in psychosomatic weeds (assuming you can fake that at your current severity level).

 

[linusbert]

I have several hormone deficiencies.

i also got low blood testosterone and high prolactin. never tolerated any hormone therapy though.
also cortisol was low in blood multiple times.

That said one can argue that you should not even mention you have ME, let them think you are a normal patient and then they won't get caught in psychosomatic weeds (assuming you can fake that at your current severity level).

i would assume that a doc who doesnt treat you seriously won't do so if you dont tell him.
so i guess it doesnt matter.

 

[Alvin2]

i would assume that a doc who doesnt treat you seriously won't do so if you dont tell him.
so i guess it doesnt matter.

It depends, some docs get stuck on anchoring bias, you have ME, its all in your head, patient not taken seriously ignored, dumbed down testing, argued with then discharged.

On the other hand you can get patient has ME, not my area, lets do the same testing i do on all patients, deficiencies discovered and treated or none found, you don't have anything wrong endocrinologically, so at least you know thats not causing exacerbating your ME symptoms.

This is what happened in my case, my doc had heard of ME but she only looked at her specialty, ran the panels and found issues that turned out to be peripheral but are legitimate deficiencies apparently co-morbid to my ME.

There was an interesting article by a trans author over at Slate where they had said they don't disclose they are trans to their docs unless necessary, if they go to the emergency room, they keep quiet to avoid anti trans discrimination.

 

[Zebra]

My doc says my pituitary gland (in terms of hormones, based on blood tests) may not be working properly and wants to refer me to an Endocrinologist.
I'm skeptical what he can do for me.

Hi, @Bansaw

I would encourage you to see the endocrinologist.

If your regular doctor suspects your pituitary gland is not functioning well--perhaps under performing or even over performing--the endocrinologist can do further testing and may even want to do a dedicated MRI of your pituitary gland.

You didn't mention the specific hormone imbalance, but there's always a chance that something like that can be treated and make a noticable difference in your quality of life.

I'm 8 years into my illness now, and while I have not found a successful treatment for my ME/CFS, I am grateful for every little modest gain I can make on other areas of my health.

I hope you will make that appointment, and if you do go, hope you will let us know how it goes!

 

[Viala]

My doc says my pituitary gland (in terms of hormones, based on blood tests) may not be working properly and wants to refer me to an Endocrinologist.
I'm skeptical what he can do for me.

Has anyone found any benefit from seeing an Endocrinologist?

It's definitely a good idea to visit one if you have the opportunity, who knows, maybe you will find something important? I went for a private visit, it was one of the best endocrinologists in my area. My labs were alright, but some of my symptoms suggested it may be thyroid, so he agreed that we run a test with one medicine. I felt worse afterwards, so I took it only for a couple of days. If I would not try it, I would still wonder if it's the thyroid. If you found something in your blood tests, it's worth to test every possibility.

That reminds me one time when I did another test and found something, I was so happy. It was funny, I guess not many people are happy with their tests showing something's off. I was like, yeah, finally!

 

[Andryr]

Worth taking if it does not cost you a fortune.