To Those With Thyroid Issues-What Do You Have Tested?

[bkweavers]

So my daughter was feeling absolutely great for the last year. She was almost going to school full time last year. She had a great summer where she went to Colorado and went rock climbing and hiking for 3 miles in the mountains. Her symptoms were almost non- existent. She didn't seem to have insomnia much anymore and the changing of the seasons didn't send her into a tailspin either.

Now for the past 3 weeks, she's been worse again. She's been extremely tired and very dizzy. We're taking her out of some of her classes so she can get a late start to school again and she's been trying to take it easier. She hasn't been like this for well over a year and I can't remember the last time her dizziness was so extreme. She's had dizzy days before but she could work through it and still manage to go to school. The dizziness would usually be gone in a few hours.

She has congenital hypothyroidism which was checked about a month ago. My question concerns that -for anyone who has hypothyroidism, I'm wondering what they always check you for? Her first endocrinologist always tested TSH, Free T4, Free T3, and T4. Her new doctor only tested TSH and T4 and it came back as normal. Meanwhile, her symptoms are fatigue, headaches, being cold and dry skin. To me, this doesn't add up. I asked the doctor about additional testing and she said they don't ever do that.

I don't think they're looking at the whole picture here. Her labs come back normal but why all the symptoms then?

I know others on here have thyroid issues so I'm hoping to get some insight into this. I'm taking Liz to her pediatrician for a work-up and have him take a look at all her old records. He's been with us since the beginning so I'm hoping to get a little help from him on this.

Thanks!

Brenda

[sue1234]

I have the TSH, FT4 and FT3. Have they done a good iron panel on her?

[songcanary]

In my case the FT3 was diagnostic. TSH was always normal. I had all your daughter's symptoms plus losing gobs of hair.

[IDreamInColor]

I have graves disease/hyperthyroid. I just want you to know that even if the labs come back as being "in the normal range" she can still have symptoms if her labs were hovering near the normal cut off range.

For example, my labs normal range is .05 to 5.5 on the TSH. However, if my TSH is running at 4 point something I DO have hypothyroid symptoms even though I am in the "normal" range. And same if I am hovering near the lower end at say .10, I will have hyper symptoms.

I feel most normal when it comes to my graves disease if I keep my thyroid at or near a 1.

[Maiysa]

Hello Teacher4K,

I had what they thought was hashimoto's, it is not set in stone because nothing showed up on the tests but I had all the symptoms. I also had toxic thyroid and unfortunately ended up with thyroid cancer which can take 10 years to show up, but not one single thyroid test showed anything. IT's so unusual, especially with three thyroid issues. The only way they were able to find my issues, which I'm not saying is the absolute case in your daughters, but they did a thyroid globulin AB, anti thyroid globin and T4Free and an ultra sound, where they found the toxic thyroid and other issues. Since I've had my thyroid fixed, it helped some severe issues I was having. But I still have a few, so it wasn't the end all be all, but what huge help to get it fixed. And don't worry about me mentioning cancer, that is not an issue for her, I just mentioned it because I had it. Very unusual for children to have that. So don't add that to your worries. And also be aware of the new normal for thyroid range. I've read that they are changing the guide lines. I can't remember what they call hypo now, but it's lower than the 5.5 that used to be the typical. Good luck to you! Hang in there.

[bkweavers]

Thanks for all the info. I'm frustrated with her new doctor because she just kind of blew me off that "they don't ever test for Free T4 and T3. I know that her other doctor used to because when she was 18 months, she had terrible fatigue and was very constipated. Both her pediatrician and the endo doc kept telling me that her thyroid levels were normal. I kept bugging them because she continued with symptoms until finally the endo did a full panel and what do you know?! She had low levels!

I took her to the doctor on Friday and had her pediatrician do all 4 tests. Now, I'm kicking myself for not having him run a test for mono as well. This just came on soooo fast and it's the kind of fatigue that she's never had before. Very frustrated and hope that something shows up in her tests.

Brenda