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Dysautonomia and Endocrine/Menstrual Symptoms


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My 19 year old daughter was a Barbie doll with a beautiful figure and regular menses that came monthly from age 12 until she was sixteen.  At the age of fourteen or fifteen she began to be very depressed.  Her periods stopped and she gained at least 100 lbs (now 250 lbs) over the last 3 years. She started having inappropriate sinus tachycardia that makes it hard for her to shower, daily headaches, constant anxiety.  She has two periods a year that last about 2 months and are heavy with clots.  Last fall she tried Sprintec, which made her blow up with edema and made terrible headaches.  Currently she started a low estrogen and is doing okay so far, but bleeding after 4 days has not ceased yet.  Her skin has striae, and her breasts will not stop growing (currently a 44G!  Last year a 42 DDD).  Her nipples get very sore for the past few months.  Right now she is being worked up for possible absence seizures - she had seizures at age 4 but they went away with meds until this year.

So my question is, can dysautonomia cause all this?  Is dysautonomia a symptom of whatever the underlying problem is?  She has been blown off by gynecology as "normal for her age" on two occasions.  Is the dysautonomia causing her to have too much cortisol in her system that is making her gain all this weight?  Should we seek counsel from an endocrinologist?  The poor girl is trying to go to college, and her health is fighting her so much.  Has anyone else had similar symptoms?  Any suggestions?  Her sister has POTS and Ehlers Danlos and is only 114 lbs.  They are both 5'9". 


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Has she ever been checked for PCOS?  Both a good friend of mine and my sister-in-law have it, and it affects so much: definitely all over the place menstrual cycles, heavy bleeding, weight gain, hormonal issues, predisposition for diabetes, among other things.   

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Guest KiminOrlando

Did they rule out PCOS? GYN should have done that. If not, ask them about it.

If that is all clear, I would go see an endocrinologist, but a real one, not the kind that just treats thyroid and diabetes. You would be surprised about that. Speaking of that, did anybody check her thyroid? You are right, cortisol levels should also be checked. All of that is effected by dysautonomia. 

My dysautonomia doctor told me that weight gain is a symptom of all of this and they are unsure how or why. Maybe somebody else here knows more? 

Sudden, drastic weight gain as a teenager is probably traumatic for her. It was for me as an adult. Kids that age can be very mean. I feel for her. Telling her she isn't alone probably isn't helpful because at the moment the kids are being mean to her, she is alone. All I can say is be there for her and fight to get her help. Her body has betrayed her and she can't make it stop.

You guys are in my thoughts and prayers.


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Thanks for these thoughts.  We ruled out PCOS the first year.  Last year it appeared she had some central hypothyroidism going on and she was started on a thyroid med.  Her antidepressants (Pristiq now, Effexor before that) increase her norepinephrine.  Could that be a contributing factor?

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