confusing symptoms in a 9 yr old

Question

I'm writing this knowing that finding an answer is almost impossible. Three years ago, my then 5 yr old had gotten Mono. Ever since then, she cannot tolerate the heat. She gets really hot, her cheeks get red and she gets a headache.Thinking it was an after effect of the Mono, I waited to go to the Dr. During the Winter months, things were back to normal. Once it got warm again, the Dr took blood work and found she had Hypothyroidism. Things are getting worse. She can't even participate in recess when the weather gets to be over 80 degrees. I've taken her to many Doctors. One Dermatoligist said she may not be sweating and tried to do a sweat test in a room that was freezing. She said there was some evidence that she had sweated on her forehead and said that's not the problem. Our new Endo. Dr said some people just get hot and to deal with it. The problem is getting worse. No Doctor has been willing to help and I'm afraid that one day she will have a heat related stroke. I guess the only real question I have for you is what kind of Doctor do you recommend me seeing and what test should I ask for? I should also mention that when she was born, she was hypocalciemic and had a hypoparathyroid problem. She was released out of the NICU and said she was fine. A year 1/2 later, she started to pass kidney stones and had her appendix taken out because a stone there. She always has slight blood in her urine. Again, the Dr's said some kids have this. I'm frustrated with all of this. She has a bunch of little problems that are not leading to a bigger picture. She is developing normal and with the Synthroid, her hair is growing and not so much is falling out. She is very irritable and has some school problems, but I'm assuming it's because of the thyroid. Please, if you can help point the way.

Smilerdeb · Answer

Well you learn something new everyday.
I have heard of 'mono' from these boards but never knew what it was until now.
I too had glandular fever back in 1991, heart attack in 1993 and then all the signs of Graves.
Amazing how everyone all seems to have the same symptoms...problems etc.
Are we all wrong????
I dont think so.

And its about time the Medical Profession reads some of these boards.
All Endo's should be made to do refresher courses as part of their Medical Practioners Licence.

grrrrr8 · Answer

It is so interesting that you developed those symptoms after Mono. The Dr here in K.C. didn't believe me that she had Mono at age 5 so he ran a test that did confirm it. I feel so bad for her, especially since she doesn't even know what's happening. I dealt with her problems for too long. And I'm tired of being pushed aside. We just came back from a field trip to the zoo and I thanked God that it was a partly cloudy day in the 70's. It could have been bad for her. Keep me informed about you. I'm curious to see what else can happen. Thanks!

grrrrr8 · Answer

We already moved. We are now in Kansas City, MO. We are seeing a peds. Endo. but as in Chicago, there is a shortage of Endo Drs, and most seem only interested in Diabetes. The Doctor here told me that some people are like that and I should just deal with it. We are finally able to see another Endo, but it was very hard to switch doctors. We go in 2 weeks. I'm hoping it's a hot day here so I can have her get hot and then show the doctor how she gets. Thank you for the info on Yale. I will check that out now. Have you heard of Children's Mercy in Kansas City? We are also close to KU Medical Center. I may try them as well.

grrrrr8 · Answer

I don't know why they stopped the T3. They stopped raising her meds because of her age and weight. They were afraid that too much would cause her to have multiple side effects. I was told she was on the highest level for her weight, which is now just under 80 pds.

chel 81 · Answer

Your daughters story seems so similar to my own- after having mono I developed hypothyroidism that went untreated for 3 years but caused me numerous health problems. I got better but then stress caused me to relapse and I am currently battling a second case of mono for the last year and a half. I get hot all the time too since having this second case of mono and have horrible side effects from the hypothyroidism that won't get under control. I wish I had some answers for you but I'm still searching myself. I think it's interesting that she had mono though and then all this came about- the same way this happened for me. I don't believe it's a coincidence even though so many doctors seem to think it's unrelated- how is it happening to mult people??? I hope you can find some answers for your daughter as I know how horrible it is for her to go through this. 
Take care,
Chel

mtkst13 · Answer

where are you moving?  could you get her into a children's endocrinologist?  will you be in the northeast?  i'd try to find research centers in pediatric endocrinology...focusing on thyroid.  considering all the issues she's had/has, i think a pediatric thyroid research hospital would really benefit your daughter.

check this site out.  http://www.med.yale.edu/pediat/thyroid/index.html

gimel · Answer

Why did they stop testing for FT3 starting in May last year?  Also, what was the rationale for not increasing her thyroid meds. in view of the elevated TSH?

grrrrr8 · Answer

On 11/2007, Her TSH level was 5.08, Anti-Thyroglobulin AB was 18.9 and Free T4 was 1.0. No medicine. Her Peds. 

On 1/2008,  Tsh was 5.80 and Free T4 was 1.0. Was put on .25 dose of Synthroid.

On 4/01/2008, TSH was 6.25, Free T4 was 1.1, Free T3 348, TG antibody screen 17.9 , Thyroglobulin (RIA) 11.0, Thyroglob recovery % 75. Put on .38 dose of meds.

On 4/22/2008, Intact PTH 29, Calcium for PTH 9.6, FREE T4 1.2, TSH 8.96, FREE T3 349, Estradiol 12, FSH 1.2, Luteinizing Hormone <0.5, Vitamin D, 25-Hydroxy 31. Dose adjusted to 50 mcg.

On 5/2008,  TSH level was 39, T4 5.3 and FTI 5.5. Dose increased to 75 mcg. Also found slightly elevated ANA levels and negative dsDNA.

on 8/2008, TSH level 6.8, T4 7.0, FTI 7.0. Dose stayed the same but took 2 pills one day a week then 1 pill the other days. 

On 1/2009, TSH 6.01, T3 173, T4 1.2. No dose changed, but moved out of state and is seeing a new Doctor. 

Next appt is in 3 weeks. Thanks for your help.

gimel · Answer

There are an awful lot of issues your poor daughter is going through.  Maybe I can speak to one of them.   Are you sure that her hypothyroidism problem had been adequately handled?  Can you please post any thyroid test results and reference ranges?