Autonomic dysfunction in diabetic 29-year-old

[wlew]

I have a few questions I'm asking on behalf of a friend's 29-year-old daughter with well controlled juvenile diabetes and celiac disease, who is currently hospitalized with severe autonomic dysfunction--low blood pressure (70/40 on admission), incoherence (especially upon awakening in the morning, and often difficult to arouse), dizziness, lack of muscle tone--which she has developed over the past few months.  

I have limited but possibly helpful knowledge of her situation.  She is on an insulin pump.  Her tilt test was positive.   Her cardiac workup was negative--no heart issues suspected. She has gastroparesis.  I believe she's been tested for Lyme's disease (negative).  Hospitalization with IV electrolytes seems to stabilize her and make her feel better.  She reverts to the same kind of dysfunction almost immediately after discharge.   She is taking Lyrica (or something like that) for severe foot neuropathy/pain. When it was withdrawn briefly, the pain returned immediately.   She was taking birth control pills for recurrent ovarian cysts, but the pills made her sugar levels go crazy and her mood unstable, so they have been stopped.  She has seen a psychiatrist due to depression about all this, but an emotional cause for the physical issues is not suspected in her case.  Nevertheless, a cause has not been specifically identified, and the family doesn't even know what kind of doctor to talk to at this point.  They are feeling desperate and need answers.

Here are my questions for you:

1.  What are the possible causes of these autonomic symptoms?
2.  What treatments should be considered?
3.  What kind of doctor should be in charge of this case?
4.  Do you know a superior diagnostician, or clinic in the New York area specializing in difficult to diagnose cases?  (She lives in Westchester County.)

Thanks so much for any help you can offer.
wlew

[wlew]

Yes, she had her adrenal function tested as part of a complete endocrine workup for a different problem a while back.  Maybe she should have it tested now again.   Thanks very much for your input.
wlew

[JDRF Volunteer SG]

Has her adrenal gland function been checked? Sometimes the autoimmune system not only destroys the pancreas, but it can also destroy other endocrine glands. My twin found after years of fatigue and low blood pressure episodes that her adrenal function is low. While she does produce adrenalin, it is in either too small or sometimes too  big amounts, for her adrenal glands don't seem to function normally. Symptoms are fatigue, a heart and pulse racing feeling when she is dumping too much adrenalin, low blood pressure to the point of passing out if she gets sick, and depression is also one of the symptoms. It might be worth testing for.

[wlew]

It would be very helpful to hear from a doctor about this case.  Anyone out there?  

Thank you, Marie, for sharing your personal knowledge of this issue.   I've passed your message along to the family.   I'm sorry you're dealing with this too.

wlew

[JDRF Volunteer CB]

I am the volunteer today and have had diabetes for 27 years, but am not a medical professional and do not feel qualified to answer your question.  I would suggest going to the Juvenile Diabetes Research Foundation website at www.jdrf.org  I think you might find some answers to your questions.  

[torrem]

I meant to say that her depression is not causing her physical issues instead of the other way around.

Sorry!

marie

[torrem]

She could be having autonomic neuropathy which affects the digestive system and it could affect the heart (heartbeat) and blood pressure.  She has neropathies already.  I have both peripheral and autonomic neuropathy as well as focal.  Anyway,  I take neurontin instead of lyrica and like her, I cannot stop taking it because the pain "kicks in".  For my autonomic neuropathy and gastroparesis, I take Reglan and it seems to help during flare-ups.

In terms of the kind of doctor she should have, an endocrinologist, a gastroenterologist (for the problems with the digestive system and perhaps, a neurologist.  A good internist could also make the diagnosis...I have been blessed with one, but we are in California.  There is the Joslin Clinic in Boston, they specifically work with juvenile diabetics.

Hope this helps...tell her she is not alone and that her physical issues are not causing the depression.  I think it is normal given her circumstances.

marie