Endocrinologist

[lgtaylor100]

Since developing dysautonomia about a year ago and being diagnosed in February I have been to many types of doctors. I have gone to two internists, a cardiologist, an electrophysiologist, two autonomic specialists, a gastro, a rheumy, a dermatologist, two infectious disease doctor and two neurologists.

I noticed that many of you have gone to an endocrinologist. My TSH, T3 and T4 are all within normal range but I do have a 9mm nodule ( to small yet (according to my primary) to investigate. I have not had testing on the endocrine glands.

What has been your experience with endocrinologists. Has one helped for dysautonomia?

[sue1234]

I started going to an endo as soon as I developed POTS. I had been seeing one for thyroid issues, but as soon as I began getting lightheaded with standing, my first thought was adrenals. So, back to the endo I went, where they did a thorough workup for adrenals and other things. That's when I found out I had a small growth on one adrenal, and have since gotten another small growth on the other adrenal. I also found out through the course of the last few years that I have a low antidiuretic hormone and one low aldosterone. I also have other things that point to endocrine things, such as the lovely mustache that's growing and some nice chin hairs.

So, in ALL of the testing I've had done, endocrine issues are the ones that keep showing up somewhat off. BTW, I had my thyroid removed two years ago due to Hashi and compression.

I forgot to add, no, nothing done with the endo has helped my POTS. Probably because they haven't done anything except test. No trial of any meds or anything.

[lizababy]

I had gone to primaries and my neurologist all of which were less than helpful. They were only able to indicate that I had a problem with my blood pressure but everything else was all in my head or I was making it up. When the primary doctor tried me on Florinef, I started researching the drug and came across POTS then DINET. The only doctor that treats any forms of dysautonomia in Chicago according to the website is an endocrinologist. I made an appointment. :-)

She did testing on my heart and all of my hormones that had not been previously tested. She checked for any possible adrenal problems (thyroid had already been checked out) before she would commit to treating in any possible way.

Personally, I have no hormonal deficiencies. My adrenaline is on the high side but not something that raised a concern. I would have never thought to go to an endocrinologist. My primary was at a loss as to even what type of specialist to send me so I sent myself. It has been worth it.

[HopeSprings]

Endocrinologists weren't able to uncover anything for me. It's hard to find a good one though that will look beyond some of the more obvious stuff diabetes, thyroid etc. I think it's worth a try though - if you can find a good one.

Sue1234 said : "I also found out through the course of the last few years that I have a low antidiuretic hormone "

Sue, just curious if you have tried DDAVP? It's used sometimes with POTS ans since you have the low antidiuretic hormone...?

[sue1234]

Naomi, I was prescribed it and tried it for all of one day. I found out for the "low ADH" to be accurate, it needed to be done in the setting of a hospital, doing a fluid fast. Mine was just done from an overnight fast. I don't know if it's accurate, and I actually can concentrate urine. But, lots of it! When I do my 24-hour urines, I make a volume of around 3500 ml. And, it is not clear, it is yellowish. First-morning urine is really yellow.

So, that is why I don't really trust the result. I am waiting for the right doctor that might know about it.

[HopeSprings]

"Naomi, I was prescribed it and tried it for all of one day. I found out for the "low ADH" to be accurate, it needed to be done in the setting of a hospital, doing a fluid fast."

Interesting. Then I guess I won't trust my results either (which were normal). I have a problem of frequent urination and it's especially bothersome at night. Oh it's bad - it wakes me up. Drinking all the extra water does nothing, but make me pee more! A lot of us seem to have this problem. Just wondered since our problem seems related to fluid if there might be an answer in this area. I know of one person who went on DDAVP and her POTS was cured (or at least much much better). I forget if she was on this message board? Just another thing to look at. Sorry, didn't mean to change the topic of this thread.

[sue1234]

Naomi, Firewatcher has low ADH also. She is the one that explained how it is supposed to be tested for. She said there is a new test coming out this year sometime that will test for this more accurately, without all the hospital involvement.

Yea, it was something I had to ask my endo to test for. I had read somewhere a couple of years ago where someone had found out they had a low ADH, began meds for it, and finally began to sweat and have the ability to handle heat!! I don't think it was someone on this forum, but my memory doesn't work at 100%. That's why I requested my doctor to test it. I want to sweat again!!

Uggh! I always have to edit, as I forget something! But, yes, I know what you mean that alot of us seem to have a fluid issue. I think all dys. doctors should be checking ADH, aldosterone, and renin, and cortisol(just because low aldosterone usually pairs with low cortisol). I did a poll recently to see how many people have had certain labs checked, and I was surprised that(I forget), like half of the people have never had their cortisol and/or aldosterone checked!! I didn't even ask about ADH, but I bet hardly any have had it checked.

[Chaos]

Igail-

I was sent to an Endo for reactive hypoglycemia which was found by a neuro testing for autonomic stuff. The endo hasn't done anything to help my POTS, although he says he's familiar with it. He didn't want to get involved in changing meds etc when there were already other doctors involved.

He did say that the recommendation is that any thyroid nodules over 8mm be biopsied, so you may be right on the cusp. Might want to check into it, especially if there's any family history of thyroid cancers.

[kluesyk]

I have found all but one endo to be very narrow minded, do not listen to their patients, and really only good at treating diabetes.

The one that was good.... died one year after I started seeing him. (I also have addison's and Hashimoto's along with POTS)

A functional medicine doctor has been the best for me. He is a MD

He will prescribe the natural thyroid(Most endo's go crazy and want you to change back to synthroid). I did terrible on synthroid for a year....fatigue, hair fell out, constipation, all continuing symntoms of low thyroid) Did better on Nature throid. Why would I want to return to a medication that made me so sick?

The last endo I saw had no interest in helping with the POTS. It was a terrible appointment.

The neprologist I saw recently knew more about POTS than all the doctors I have seen with the exception of the doctor at Vanderbilt.