My 15 year old son had an MRI in 2009 that indicated a 3mm focus on right side of pituitary gland - elevated Prolactin levels triggered the MRI to be done - since 2009 he has had radical ranges in his TSH levels - example:
levels of TSH - 13.1, 14.55, 11.27, 15.19 and 14.02 - T4 free levels have indicated .8 - sometimes higher and sometimes lower - He has been under the care of an endocrinologist but I recently requested a second opinion with a neuroendocrinologist. He has not been placed on any Thyroid medication as of this date and the MRI has not been repeated. His behavior and radical emotions seem to escalate tremendously when his TSH levels are as high as indicated above. At other times when he is not so agressive, his levels are upper 3's, 4's and 5's. At the same time he has increased in weight to an obese level and concentration (particularly in school) has drastically changed - he went from honor roll student to failing his grade in one year and has been going down hill since. He experiences bouts of depressive moods, trouble sleeping or sleeping too much. I am very curious to hear from anyone who has experienced this with their child and what I may be looking at. Our appointment is in the next couple of weeks for the second opinion.
It is not at all unusual for someone to have all of those symptoms and experiences with pituitary and endocrine hormone dysregulation. Medical protocol seems to be to ignore a lesion under 5 mm, even when people are having obvious symptoms. It's very frustrating.
Hopefully your neuroendo will act to get your son the care he needs asap.
My son is almost 15 years old. He had a pituitary tumor removed in 2009. It was 19 mm by the time of the surgery. He had been having symptoms for years, without correct diagnosis.
As a result of delay, he has significant permanent pituitary damage.
Keep the pressure on your son's doctors to stay on top of this. He should be getting treatment for the thyroid imbalance, at least. Have his IGF-1 level tested too.
Please don't let a computer glitch stop you from visiting medhelp and asking more questions. The members here can be extremely helpful in addressing your fears and concerns.
I hope your son feels better very soon.
Thank you Claire and thank you Enzymelover. I do find it comforting to be able to talk to people about the issues I am experiencing with my son. Enzymelover, i'm so sorry it took so long to have your son properly diagnosed. Your experiences encourage me even further to make sure that all my concerns are heard, stay vigilant and seek the very best care for my son. The one thing that I have learned so far in this process is to get copies of all lab reports. I was not seeing them and as a result, I was trusting that the doctors were following the right course of action. However, after seeing all the labs and matching them to my sons symptoms and physical and mental condition..... and researching a little..... I realized that I have to seek a second opinion. He deserves and could possible have a much better qualifty of life than he has right now. Thanks again! - PS - his IGF Binding Protein-3 level was within normal range in 2009 - I have not seen a recent lab for him for IGF - However his FSH was out of range (low) - his Insulin, was high and his Testosterone level was low. His LH in April of this year dropped from within range in 2009 to .8 (Low) - Normal reference range being 1.5-9.3 mIU/mL
You may have to seek out several opinions. Make sure you get copies of everything, read up on it all, and just keep up on what is going on. Some docs will not like this - but it is very necessary as things can get overlooked. Some tend to stop looking once one thing is found, but there may be multiple issues - so be persistent.
The mods are working on the glitch - it was not you.
Sorry I've taken a little while to get back to you. My daughter is 10 and born without a thyroid gland. Your son's symptoms definitly sound hypothyroid to me. They are alll things that I've seen at one time or another with my daughter when she was undermedicated and left hypothyroid by a doctor who refused to look at her free t3 level. The pituitary could be affecting your sons TSH level and it could be giving you a too low reading! The doctor probably is thinking it's a false high reading--but judging by his symptoms of hypothyroidism I would suspect just the opposite. The actual available thyroid levels need to be looked at closely to know for sure (Free T3 and Free T4) This will tell you the most and will let you know if he needs thyroid hormone replacement. Good luck and God Bless and trust your motherly instincts as we are usually right when it comes to our kids! Fight! Fight! Fight! until you get things right is my motherly moto!----Anne
Thank you so much for sharing your experiences with me. It is very helpful and definitely encouranging. We are looking forward to our consult with another doctor - we are seeing a neuroendo in 2 weeks and hope to get some answers. God bless and thank you again! -
Update - hello again all. It's been a little while since I last wrote to all of you. We went for our 2nd opinion yesterday and the following bloodwork was done - they will call me when they get results - Free T4, IGF-1, Prolactin, T3, T4, TSH, calcium, FSH, LH, PTH in addition to spot urnine ca and spot urnine creatine and IGFBP3. They have also ordered a repeat MRI of the pituatary gland in addition to cortisol, serum Na, serum osmolarity, and urnin osmolarity (these are for kidney function) Hopefully we will have some answers and a plan of action. The new doctor is definitily focusing on the 3mm pituitary adenoma, something our other endo did not focus on at all and even noted in a report that it was "insignificant". Mothers out there, listen to your instincts - don't settle.
It's good to hear from you! It does sound like this new doctor is better focused on finding some useful information to help your son. I find it interesting that they already ordered another MRI, before seeing the blood test results. Many doctors won't do that. Sounds like this doc doesn't want to waste any time.
You said the original MRI was done because of elevated prolactin. Do you know how high it was then? I will be interested in seeing his new test results too.
Hi Enzy - thanks to you and everyone for your kind thoughts for my son. In answer to your questions - yes - they had all of his medical records to review 2 weeks prior to our visit and immediately ordered a repeat of the MRI (prior to any new blood work taken)- his prolactin levels were only taken once and that was by our pediatrician prior to him being referred to our old endo in July of 2009. Those levels were at 15.6 then. (not severely high but high enough to alert his pediatrician to have an MRI done) His endo never repeated the prolactin levels or the MRI and stated in his report to our pediatrician "Some breast growth was noted and evaluation core was 15. MRI showed a small "lesion" in the pituitary gland. I have not had a chance to reveiw the with Dr. XXXX, but does not sound that significant..." I will note that his physical symptoms (enlarged breasts) related to increased prolactin were not as visible at this current visit as they were in July of 2009. However the new doctor ordered a repeat of prolactin levels. I will let you know more when the lab results come back. I feel as though this new doctor is really covering every base and wasting no time in doing so.
One other thing that I failed to mention is that our new neuroendo indicated that our old endo had a XR Bone Age test done on my son. I told her yes he had - it was an x-ray of his hand. She wanted to know if he had reviewed that test with me and I said no he had not. She then proceeded to tell me that my sons skeletal age is that of a 14 year old. He will be 16 in 3 weeks. She did note however that those tests have a deviation of + or - 11 months. We will know more when the labs come back.
Not sure where we go from here.... the first set of labs came back within normal range other than his Vitamin D being low. His cortasal lab work has not come back yet and we are still scheduled to repeat the MRI. Confused..... This is the first time that all of his labs came back within normal range.... not quite understanding it.
Thank you for the feedback and I will let you know when we get the other results. He is now being tutored at home rather than attending regular school. He can't stay awake or focus during class so his school has arranged for him to be tutored. Thought of giving him a treat last weekend and took him to the mall for lunch and shopping - ate lunch and then he asked for keys to car so he could go lay down. He slept in the car the whole time I was in the mall shopping and then all the way home. Stayed up for a little while when we got home - ate dinner and went to bed. So sad to watch a 15 going on 16 with absolutely no energy level.
It is so frustrating when you know something is very wrong, and nothing is showing up on a test that would help push forward your treatment. Your son's sleepiness does sound like a low hormone problem - low cortisol, testosterone, thyroxine. My son was just the same when his hormones were all too low (all of the above, but especially cortisol).
I'm waiting to hear what your boy's cortisol test indicates. Even if it's low normal, you might want to push for a trial of hydrocortisone to see if it helps.
i understand your frustration. it is very frustrating to have tests being normal. i find myself wishing sometimes that i had a 10 mm tumor, so that it can be removed and id be happy...although its not that easy!!!!!
vit d deficiency seems to be prevalent in a lot of people. i have it, and i take 10k units a day, as that is the only dose ive found ANY relief from bone aches with. ive done the research and you get 10-20 k from 30 minutes in the sun. i had a vitamin d draw from the endo yesterday to make sure ill be ok,and if its high ill drop down to 5k...although i stopped taking any vitamin d a week before going to the endo to avoid it effecting my hormones,so it will be lower than usual.
anyways keep trusting your boy. you and he know best!!!! you guys know something is wrong,and you will find out what it is!!!!
I have an 8 year old son. Big boy even though all he would eat is pizza. almost 80 pounds. I finally got an endo panel run because of a mid-line issue that they think he might have had at birth. Well his prolactin level is 18.5 should be between a 4.0-15.2. On top of that his eyes are starting to flutter almost a tic - like he has dry eyes. His neck is hurting...not saying it hurts all the time, but he is moving it all the time (almost like cracking his neck). This also starts to look like a tic if I did not know his blood work. His TSH level is a 6.09 but should not be over 4.8. His Free T4 falls normal. His Triglycerides are through the roof (almost double normal). LH is .4 and FSH is 1.3 (I have no idea if this is good or bad).
DAD has a ptolactin secreating tumor also!!!!
Am I crazy or does my kids have a tumor????? Can not get into the endo until the end of OCT!!! What should I do???
I would take him to a pediatric endo. Be prepared that the weight question is going to become a diet issue - it does for everyone before they will see it as a metabolic issue.
BTW your lab is using old TSH range as it should be .3 to 3.0 so his thyroid is really off. Did they check Free T3 as that is what the body uses? T4 has to be converted.
He may have a pituitary issue so it is good to get him checked out - just get copies of everything they run (sounds like you so already) and keep track on the doc so they don't just say it is pizza. Been there - I have a couple of pit tumors myself. There are links in the health pages that may help you. Keep us posted. It may help to open a new thread for him so we can keep both stories separate.
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