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16 yr old with primary amenorrhea, rapid weight gain, hot flashes, acne...
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16 yr old with primary amenorrhea, rapid weight gain, hot flashes, acne, moodiness, and depression

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_m_tn
Since her TSH is well within the range and her FT4 within the low limit of the range, many doctors would pronounce that there is no thyroid problem.  But TSH is a pituitary hormone that is affected by many variables, to the point that it is inadequate as the primary diagnostic for thyroid.   For example, the TSH can sometimes be misleadingly low if there are pituitary problems.  

Just focusing on thyroid, with her symptoms and her FT4 being so low in the range, I suggest that you get her tested for Free T3 also.  FT3 is the most active thyroid hormone.  FT3 largely regulates metabolism and many other body functions.  Studies have shown that it correlated best with hypo symptoms. while FT4 and TSH did not correlate very well at all.  If FT3 is also in the lower end of its range, then along with symptoms, that would pretty clearly point to hypothyroidism and a need to evaluate her pituitary function.  I think I would pursue the potential thyroid issues first.

The most important thing is to have a good thyroid doctor, not necessarily an Endo.   A good thyroid doctor will treat a hypo patient clinically by testing and adjusting FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not test results.  Test results are valuable mainly as indicators during diagnosis and then afterward to track FT3 and FT4 levels as meds are increased to relieve symptoms.

You can get a good idea about clinical treatment from this link.  It is a letter written by a good thyroid doctor for patients that he is consulting with from a distance.  the letter is sent to the PCP of the patient to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

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Avatar_f_tn
Thank you for your help and suggestions!  It is difficult to find a good thyroid doctor - do you know of any websites that can refer a good one by zip code?
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Avatar_m_tn
OMG, you live in an area with a highly regarded thyroid doctor.  I'll send the name by PM.  The only problem is that he may not be taking any new patients.  If not, maybe they can at least recommend a good thyroid doctor for you.
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Avatar_f_tn
Thank you!  I will give him a call and let you know!  I appreciate your help!
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