I know I've asked this already, but did not get much in response..

[AmySLP]

We are seeing an Endocrinologist tomorrow with our 6 yr old PANDAS daughter. Her TSH was elevated 7. (something) and last bloodword was 5. (something). Normal range max is 4.2. Our pediatrician set up endocrinology appt, but Dr. B feels that it is self correcting, as the number has fallen getting nearer to normal over a six month period. That lab work was not drawn during exacerbation where we are now though. Not sure what knowledge this doctor will even have of PANDAS and wonder if I will get any critisism of that dx. I will be printing the basic info for her just in case. Just wondering if anyone else has had fluctuating or any kind of changes/problems with the thyroid.

[LNN]

I believe Pixiesmom dealt with a thyroid dx. She used to post quite a bit on the Pandas forum, then dropped off for awhile and was posting on the lyme forum this past spring. Haven't seen recent posts, so you may want to PM her.

[peglem]

In March, my daughter was having symptoms that were unusual for her- upon investigation her TSH was high and when I researched her symptoms fit well with that. But, a few days later, we went to the emergency room and were admitted overnight to the hospital. Her thyroid levels had normalized by that time. What I have seen since then is a resurfacing of those symptoms (but not as drastic) w/in the week before her period. Then the symptoms seem to reverse during her period. I don't know whether to pursue this w/ endocrinology- will they say its just normal for a teen until her body adjusts to the hormonal changes of menstruation? Or will they not even pick up the fluctuations w/ blood tests and end up doing a lot of blood work for nothing? We have checked with the endo a few times over the years and have had this elevated TSH before, but w/o abnormal T3 and/or T4 levels, the endo seems to think its meaningless.

[JAG10]

Hi Amy- Not much to add, no problems with my dd11's TSH that I know of. But both my MIL and SIL developed hyperthyroidism after pregnancy and remain on medication. I remember when going over family hx with Dr. T, he thought that was significant and said we would need to monitor overtime. I can't remember the exact significance he attached to it other than the autoimmune component, but perhaps you could pose the question on his blog and he might have some other insight for you. Ttyl, Jill

[kimballot]

I believe Pixiesmom dealt with a thyroid dx. She used to post quite a bit on the Pandas forum, then dropped off for awhile and was posting on the lyme forum this past spring. Haven't seen recent posts, so you may want to PM her.

 

Amy - my DD16 (? mild PANDAS)had elevated TSH a few months ago, but T4 and T3 were in normal range. She had lots of thyroid symptoms and I thought it was autoimmune. She had her tonsils out and her overall health improved - then TSH was lower and near normal range. We test again this week.

 

Peg - interesting info. about the menstrual cycle with you daughter. Thanks.

[sptcmom]

Amy, hormonal disregulation is a well known TBD issue, not PANDAS. PITANDS maybe but not pure PANDAS. I have a mother (39 yrs) and daughter (6 yrs) patients with congenital Lyme and both have Hashimotos.DS-9 and I have both waxed and waned with enlarged thyroids with mild hormonal fluctuation. My pituitary hormones are off.

Jodie

[dcmom]

Amy-

 

We are currently having our girl's thyroids checked.

 

My SIL said my niece has thyroid issues. It fluctuates btwn too high and too low. Her endocrinologist said that is the typical course, and eventually she will probably need medication,

 

How did the appt go?