ENDOCRINE HELP in MIDWEST

[Neshema1]

I am desperately in need of an endocrinologist in the Chicago area who FOLLOWS UP!  I have POTS and it has affected my endocrine system to the point where it is difficult to function at all. Every endocrinologist is booked and mostly interested in diabetes, including one who supposedly specializes in POTS. So, can anyone tell me if they have found satisfactory endocrine help? Please help!

[Neshema1]

Ok, wow, didnt even remember signing up for this site. Glad I found it again. I am STILL in dire need of an endocrinologist/neuroendocrine doc in CHI or anywhere who can deal with a multitude of weird levels, including untraceable vit D corrected with 100,000 D week, continued hyperPARAthyroidism (causing a 30% sudden weight gain all in my waist making me look pregnant with triplets on a very tiny person who can't eat due to gastroparesis, and used to eat entire cartons of ice cream each night to try to gain weight), osteoporosis since age 30, premenopausal still but with increased estradiol, cortisol, norepinephrine, metanephrines, yet, chronic fatigue and vitals that bounce all over the place (I have an implanted loop EKG monitor now), urine sodium of 15, anemia, sky high B12 (no one seems to get that...i don't take supplements), low potassium at times, and I need to get out all the labs. I had an mibg scan of the adrenals, and they didnt find a tumor, as expected, yet the hospital has only done a couple ever! I don't remember if I had a scan for PTH tumor. I have been getting night sweats (drenching) for about 18 years. I've had some weird blood issues (malformed platelets, large platelets, large something else cells...who can remember it all?). My blood sugar is slightly elevated fasting. MY BP goes from 200+/200+ and HR 200, but BP tanks most of the time. HR is almost always high, and is over 135 daily, whereas it was 68 before POTS. I have seizures (convulsive syncope), especially after an evening meal..they go in cycles...daily to two weeks off, I have about 2 good hrs a day when up at all (I can sleep for several days in an almost comatose state & get dehydrated), then I "crash." I'm too tired to be sitting here writing this, but a bit out of sorts after a week of scans and seeing my very awesome EP today who is quite concerned. Seems I could have something more than POTS, as I just decline more and more. Every system seems to be involved, even my pupils in my eyes! I often slur my speech and have neuropathy and raynauds (am freezing all the time, except when I try to exert myself...a former athlete). I am a dingbat a lot of the time and lose and forget stuff (tough to qualify instantly for disability as a renowned professor at a major university (like who cares now! I just want to have fun before I die), and am still just mid-career age, but sort of am resigned to the fact that I have to approach my health as I did my tenure and promotions. I spent my whole life planning it to go a certain way, and then I guess it was time for me to be humbled and learn that I am pretty fragile and give myself a chance to realize the best things in life are the simple things I had no time to notice before...Anyway, I am feeling very isolated, and we just can't find an endocrinologist who really is interested in complicated cases. Seems they have their hands full with diabetes and thyroid. Travel is difficult, but I will go anywhere. I am due to go to Vanderbilt this summer, and already did Mayo. I have the best team of docs other than an endocrinologist.  Does anyone else have all these weird levels of hormones/vitamins/electrolytes? Does anyone know if there is a name for POTS that seems progressive, sort of like MSA but with tachycardia? Is that Pandysautonomia? There are so many endocrine things like hyperparathyroidism that mimics pots, and usually involves a  benign tumor that, once removed by simple operation, results in drastic improvements that could give me back my life, yet there are also many other very serious possibilities that undetected could cost me my life. PLEASE PLEASE PLEASE help me. If you know of a person who deals with complicated endocrine issues, and possibly dysautonomia, I don't care where the doc is. Please share. You can also write me at Neshema1 at yahoo. Also, if you know any answers to my questions about POTS v MSA v Pandysautonomia or whatever it might be called, please tell me. Thanks so much for your attention. Yes, about the MW doc (my neuro is in MW), I  would be most grateful for the info, and any updates on what's been found about the "mystery illness." THANK YOU BOTH! Oh, and yes, I have had the supine-standing NE test twice, second time was worse. I have had a neuro test for polyphuria (sp?) and a blood test for mysethenia gravism (which he was sure I had, but was negative, and he was going to do muscle biopsy and EMG testing, but his role was to give me a sleep study in Chicago for my MW neuro, and I think he just decided to pull out since he was so sure and had me so hopeful he would figure it out, then found nothing new in my blood tests). My EP still wonders if I have a pheo or MEN or something of that nature.

[chames]

Hello,

Well, I'm not far from you -- in Milwaukee -- and though recently working with an excellent endocrinologist (group) locally, for my husband's 'mystery illness,' once it became apparent it was more likely neurological, i.e., autonomic (vs. the pheochromocytoma they were initially hunting), the endocrinologist seemed to lose some interest/focus.

However, she's still there for us, returns calls and there are some specific, separate(?) endo issues my husband will continue to seek her expertise and treatment for. And while she is clearly deferring to neurologist at this point on the autonomic part of the equation, once that becomes clearer -- we hope they will work as a team.

What we have liked about her so far is she's been very open with us, very positive and very helpful in making several key referrals.

Completely agree with Heiferly, so well stated as always ... glaring lack of current research on most of these disorders, esp. as they relate to other systems and organs.

So, not sure this is ANY help at all, but if you want the name and # of this endocrinlogy group in southeastern Wisconsin, to personally quiz someone there on their capabilities and knowledge of POTS, let me know, I'm happy to pass along that info to you.

Hopefully, some other poster will have some terrific Chi-town option for you to investigate.

[Heiferly]

I wish I could give you an answer, but my attempts at getting help from endocrinology in the Central Ohio area have been all for naught thus far.  I would love to hear from anyone who has found an endo in the Midwest who has taken a genuine interest in POTS and demonstrated knowledge in the types of endocrine issues we are most likely to face.  The ones I have seen so far not only seemed entirely ignorant of contemporary research on endocrine-related issues in POTS in peer-reviewed medical journals but had too much ego not to be indignant if a patient tried to introduce any of this information into the mix.  One thing to realize is that while (for example) renin/aldosterone fall under the specialty of endocrinology, the journal articles discussing plasma renin level abnormalities and POTS were published in neurology and cardiology journals, not endocrinology journals.  A search of the major endocrinology journals in the US from January 1992 to present found ZERO articles that mention POTS at all, let alone devote the whole article to it.  (Only six articles turned up with a mention of dysautonomia.)

Are there certain tests in particular that you are looking for?  Or are you unsure of where to start even?  Tests such as norepinephrine levels taken both supine and standing are pretty elusive unless you head for a major autonomic center like Mayo or Cleveland Clinic, I think.  I don't know why, but other facilities have the tilt tables but just aren't running these tests.