Advice neededfrom those with experience: underactive Thyroid

martina

Sun, Oct 30 2016, 12:26 pm

I hope you can help me.
My son was diagnosed with hashimotos a while ago (underactive thyroid auto immune disorder). He has been on meds for several years now, every now and again there have been episdoes of weakness, extreme exhaustion which usually showed up in the bloodtest as the TSH and ft3 and ft4 levels not being ok and then with adjustment of the meds he was fine. Last year yom kippur he fasted terribly and his body crashed afterwards. It took him weeks to regain his strength. This year was even worse. And he still isn’t better. The doc upped his dosage and his TSH level is as beautiful as it has never been before now but he still isn’t ok. He has hours in the day that he is fine and then suddenly immense exhaustion overtakes him and he can almost cry from how weak he feels. He has to go back to yeshiva now for the new zeman and I feel like a horrible mother sending him like this. Can there be something else we are missing? Anyone with experience can tell me what to look out for? The doctor ran bloodtests for all other kinds of thing and couldn’t find anything. My gut tells me that the fasting triggers something in his system that causes it to crash, I just wonder what? Any tips are welcome.
Also does anyone have experience with cortisol issues? How are those checked and diagnosed and treated?

Last edited by martina on Sun, Oct 30 2016, 1:32 pm; edited 1 time in total

amother

Lime

Sun, Oct 30 2016, 3:14 pm

What type of doctor is your son seeing? Is he a pediatrician or a specialist? I hope he's seeing and endocrinologist. Maybe it's time for a second opinion?

My brother was diagnosed at birth with hypothyroidism and has been on Synthroid all his life. He had frequent visits with an endocrinologist as he grew so that his dosage could be adjusted. Puberty was a rough time for him because of all the hormonal imbalance so he had even more frequent visits with his endocrinologist. Now that he's an adult he just needs an occasional visit.

PinkFridge

Sun, Oct 30 2016, 3:55 pm

Yes, definitely a pediatric endocrinologist. I've heard of stopthethyroidmadness but haven't checked it out much. It seems reliable. Another good source is Mary Shomon, her presence on about.com and her book Living Well with Hypothryoidism but I don't know how much she talks about hypoT.

Diet, etc., may be very helpful but before possibly torturing a kid (though he may feel so lousy that he'll be happy to try it) do your research. Make sure your doctor's not going by TSH alone. Find out what a good TSH range is for kids as well make sure you have hard copies of everything so you can monitor his T3 and T4.
Not clear on Addisons - did you say you need to rule it out?