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Avatar universal

16 yr old daughter with primary amenorrhea and r

I have a 16 year old daughter (will be 17 in July) – she has primary amenorrhea.  She started to develop around 9 or 10 but never seemed to fully develop like her peers.  She had always been around the 45 -50%  in weight.  Around 13 or so, she lost 15 lbs (from 118 to 103). This was due to she started eating healthy and was very active with competitive cheer and started running.   She stayed around 107 for a little more than 2 years.  In August 2010, she suddenly started to gain weight (mostly in her upper thighs at first).  It was like someone turned on a light switch.  There was no change in eating habits or in activity.  She has continued to gain weight unintentionally since then and has gained over 40 lbs now.  She has a round face and she doesn’t look like herself anymore.  She is moody, nauseous, hot all the time, and of course, a little depressed.  I started out taking her to a GYN in October 2010.  They said they felt she looked good and asked why I wanted her to start her period so much. They did do an external ultrasound which shows she does have a uterus and ovaries but they are very small and the left ovaries have fluid around it.  I then started taking her to an endocrinologist.  They have done a lot of blood work.  Here are some of the results:
Tsh 1.11, free T4 .8, LH 3.0, FSH 8.7, testosterone .48, Westegren sedi rate 8, IgA negative, IGA 248, Vit D 70, AST 24, ALT 20, ALK 72(low), Bilirubin .3, lymphocyte 19.4 – they did test her cortisol which I don’t have the value but was told it was normal.  However, her urine output was 674 cc in a 24 hr period – which seems very low. (FYI she did have Urinary reflux when she was 4 and has surgery to correct it - grade 4 on left side and grade 3 on right - also has a double collecting system on left side)  Her fasting glucose was 103. Prolactin 6, GH 8.7, Somatomodin 406.

She did have a GnRH test done – her LH and FSH didn’t change after an hour after receiving the hormone (Estradoil was 24, LH was 3.0 and FSH was 8.7) but 24 hrs later it did increase to estradiol 210, LH 74.9 and FSH 23.4.  The endo stated that she believes she has hypogonadism.  And since this test was kind of flat, they did an MRI.  Which showed her pituitary to be asymmetrical with the right side slightly more prominent than the left and a 3-4 mm area that filled in with contrast on early dynamic enhanced images and on subsequent images and suspious for a microadenoma.  

We saw neurosurgeon that says her labs aren’t bad enough to be concerned with the adenoma.   He says the adenoma isn’t causing her problems and so we are back to the starting block again.

Can you please tell me where i should turn to next?  They keep saying it’s normal to gain weight.  But I am telling you, it’s not normal for a girl that hasn’t changed her eating habits or activity to gain 40+ lbs in 7 months and to have never start her period!  They keep referencing when she lost 15 lbs but why aren’t they concerned with her gaining 40 lbs?  I wasn’t concerned about an eating disorder before but I am know.  I am afraid my daughter is going to start to starve herself to lose weight because no one will help her.  Please, any advice would be much appreciated since I am not sure what else to do.
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Avatar universal
thank you for your comments - I will let you know how it goes.
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Avatar universal
There are a lot of reproductive conditions that can cause what she has. PCOS comes to mind as well, in regards to weight problems. I would not think she has turners, as that has many other symptoms that your daughter does not have. I hope the appointment goes well.
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Avatar universal
By the way, she was tested for Turners and she doesn't have it.
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Avatar universal
That's what I keep saying - that all her hormone levels are low and inquired about hypopituitarism - which they said she wouldn't be able to function if she had that.  It seems like doctors just assume that since she is a teenager and there are weight flucuations, that she has an eating disorder.  But what about the teenagers that really have a problem and need treatment.  She has an appointment with a Reproductive Endo on May 4th - I am really hoping she will listen.

I will also ask about menopause -

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Avatar universal
At 5'4" and 103 pounds, she would be considered underweight when she had originally lost some pounds. Have you looked into hormone replacement therapy? That may be of help for your daughter. Hormones do a lot to a body and can change a person's weight. I'd ask the next specialist about it and see what they say. Her symptoms almost sounds like menopause; moody, weight change, hot all of the time, etc. The small ovaries and uterus, makes it sound like she is not producing enough hormones. Hope you can get some answers.  
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Avatar universal
She is 5'4" (FYI - she was tested for Turners - which she doesn't have) - they have checked all her hormones - most are low.  I am taking her to a reproductive endo - hopefully they will have some insight?
Helpful - 0
Avatar universal
How tall is your daughter? Have they checked her hormone levels (Progesterone and estrogen)?

A quick change in hormones can cause someone to gain or lose weight without a diet change or change in activity level. I'd go to another gynecologist and ask about hormone levels and what can be done for it.
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