daughter has hashimotos but not getting better could it be pituitary related

[mlsky]

My 14 year old daughter has been off and sick for 2 years following an episode of mono. She's had dizziness, nauseaus, feeling EXTREMELY hot, lots of weight gain (from 67lbs in Aug 07 to 103) , missed periods last 6 months, unusual acne/oiliness for her, off and on leg pain, swolen neck-puffy face, and extreme exhaustion. She had the dizziness, nausuea, and feeling hot off and on the past 2 years and recently after she was ill in Feb. everything esclated and she has been worse. We've had lots of test and her thyroid anitbodies (TPO-TG) were elevated, her testosterone was elevated, her growth hormone was slightly high, prolactin was within limits but on upper end, LH and FSH were low, cortisol (10 both morning and noon) and progesterone was low. After she wasnt better they did an ultrasond and she had noduels consistent with Hashimotos-they put her on synthroid. It helped some with the exhaustion but she is still very sick.  One odd thing I noticed was when she gets really hot and i feel her it is often just her upper arms and head/neck area. She also gets very puffy in the face as the day goes on-it seems moving around makes everything worse.  Her dr said to give her Vit D in large doses but that also makes her worse. They did a Brain (not pituitary) MRI and it was ok. They also did an ultrasound of her abdomen. Any Ideas?? I am so worreid and exhausted of not having an answer. We have had to take her out of school because she feels so bad and just need to help her.

[magpieannie]

Hello! I have a nine year old daugter who was born without a thyroid gland in Sept. of 2000. It has been a challenge at times, and takes lots of research and self education to really get a handle on this life dependant on thyroid hormone replacement. A good book that I read recently on living well with Hashimotos/Thyroid disease is available on Amazon.com and was suggested by Tamra who post often on here if you'd like to get in touch with her. The book is called "Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal" by Datis Kharrazian. There is lots of great info. on life changes that could help her live better with / manage the disease. I think you will find lots of help her on med help as well as there are many here who have learned how to best live with thyroid issues. It is very complicated at times, however, if my daughter has gotten well then so can yours! Don't give up the good fight as she needs your guidance and assistance with this so that she can have a good life again and can just enjoy being a teenager! Do you have her last levels for TSH, Freet4 and Freet3, so we can give our opinions about where her levels are falling within the normal reference ranges?

[bitter01]

As someone who had Hashimotos and subsequently had both sides of thyroid removed(yes two different surgeries-I don't know why) I will offer this. The thyroid is the centre of the universe. It took nearly 10 years to get my levels constant..and ultimately the only thing that worked were different doses of thyroid  each day..one amount even days an increased amt. odd days.  The issue with thyroid is blood work reflects the norm..who knows what YOUR daughter's normal levels were prior to diagnosis which resulted in her feeling well-perhaps she runs better on the high end or lower end of things. Her doctors need to listen to her body, especially at her age with all the hormonal changes going on internally. I would also suggest she have blood work done pre-menstral cycle and mid-cycle..you may find her levels flucuate dramatically in less than 5 days- mine did.  I also have two sisters with same issues and ultimately duplicated med. dosages required to find stable levels and overall improved health. Sorry I can't offer more than support and confirmation it isn't all in her head or yours...her physical issues are real and you and she need to make sure you have a doctor who accepts her description of how she "feels" as the measure of how well they are looking after her. Good Luck.