Hashimoto's disease in children

[dach0507]

Has anyone experienced Hashimoto's disease in children? 

I am waiting to hear from my son's pedi, and in the meantime trying to get info from Google. It seems like it's likely nbd and easily treated with medication.

I'm also curious if anyone has had a misdiagnosis of ADHD that turned out to be Hashimoto's? It seems like some of the symptoms might overlap? 

I know Google is usually not a good idea, and I'm no medical professional, but I couldn't help looking to try to see what the lab results might mean. 

[twinmomma]

Not in children, but I have it. I can confirm that once we figured out the right dosage of medications, it's made all the difference in me feeling better. I used to have insane joint pain, fatigue, hair loss, migraines... All kinds of awful stuff. Now that I take daily levothyroxine I feel so much better! The most annoying part is that you're not supposed to take the medicine near when you eat. So I take mine at bedtime instead of in the morning. I can always tell when my numbers must be off because of my joint pain, so that's when I make sure to get labs checked to adjust dosage if needed.

[dach0507]

Mar 22, 2024 16:14:10 GMT -5 twinmomma said:

Not in children, but I have it. I can confirm that once we figured out the right dosage of medications, it's made all the difference in me feeling better. I used to have insane joint pain, fatigue, hair loss, migraines... All kinds of awful stuff. Now that I take daily levothyroxine I feel so much better! The most annoying part is that you're not supposed to take the medicine near when you eat. So I take mine at bedtime instead of in the morning. I can always tell when my numbers must be off because of my joint pain, so that's when I make sure to get labs checked to adjust dosage if needed.

This is really helpful, thanks for sharing your experience. 

Can I ask how old you were when diagnosed and how long it took to find the right med dosage?

[eb777888]

My niece was diagnosed with Hashimoto's when she was in her teens. Her mom (my sister), me, and my other sister all have it, but ours wasn't diagnosed until after our first children were born.

David's had bloodwork twice and with my family history, they tested both times. So far,  so good. My niece takes Synthroid every day and is very healthy!

[sandandsea]

I have it and was diagnosed at 12 so probably had it before that. It’s been controlled with meds for 30 years. I still have some symptoms but it’s manageable.

[dach0507]

This is all very reassuring - thank you! I’ll wait to hear from the doctor, but it sounds like either way it’ll be fine.

[chickadee77]

I think I'm an outlier, but I've had it since my teens and have never been on any meds for it. It's always just a, "Oh, you have Hashimoto's? Okay. Well, your other numbers look good, so see you next year!" So maybe I just have a very minor case?

[twinmomma]

I wasn’t diagnosed until I was an adult, after pregnancy.

[wanderlustmom]

Yes I also want to reassure you. I was diagnosed at 25 in grad school when my doctor felt a nodule on my neck. I had bloodwork that came back positive and I’ve been on mostly the same dose of generic synthroid for 25 years. The brand didn’t help me as much. My sister had thyroid cancer so they monitor me more and one year I had thyroid biopsy and that unfortunately really hurt.

I went a little extra for bloodwork during my pregnancies and I’ve had a few flares. I feel like perimenopause seems a little extra for me but who really knows? My flares cause tiredness and joint pain. I don’t eliminate carbs but I have to watch them and I found in my 30s I absolutely needed cardio to feel good. Some of my friends would be like I better exercise. For me it was like I absolutely better to feel human.

I really like my doctor but there are limits to medicine though and I have to do some reading on my own. But overall I feel really good and it hasn’t held me back in any way

[DotAndBuzz]

Yes, my family has experience with this. Diagnosed at age 15

Her Symptoms: EXTREME tiredness, including napping for like 3-4 hrs in the middle of the day, then going to bed 2 hours later, preceded by a couple weeks of super focused productiveness. Migraines like 2-5x/week for months (saw a pedi neurologist first because we thought it was a “brain problem.”). Generalized pain, aches, in her joints and abdomen.

True diagnosis came with a blood test. Her thyroid antibody levels were off the chart high, and free TS3 (or 4?) were really low.

Now on 75 mcg synthroid every morning. She’s part of what I have learned is called the “before breakfast club.” Has brought thyroid levels back to normal, and basically fixed the problem. Biggest hurdle has been the psychological one, and accepting that she has a chronic life long condition, despite being relatively easily managed.

[stemmie]

I was finally diagnosed at 13, I probably had it at least a year.

My symptoms were sluggishness, constipation, dry skin, heavy periods, and emotional lability.

[liverandonions]

I was diagnosed at 18. Once my med dosage was correct it was nbd. When i start to feel off i would get new blood work and have med adjustments as needed. I had nodules so i was pretty much guaranteed to be seen at least every year anyway.

ETA: Symptoms were sleeping 13-14 hours a day (freshman in college- i was missing classes) and i was SO HOT even in february. LIke wanted to strip off my clothes in the dining hall I was so hot. I also had a racing heart. 

[glitzy07]

It's not Hashimoto's, but I was born with an under-active thyroid (hypothyroid) and have been taking medication for it since I was five days old.

As a child I had to see an endocrinologist every six months and they closely monitored my thyroid levels and medication dosage. But other than the regular blood draws and a daily pill, it wasn't much to manage at all.

As an adult, my levels have been pretty stable for a while now. I was closely monitored again during my pregnancies, but now I just get my levels checked by my regular doctor at my annual physical. Because I've been stable for such a long time, she felt comfortable managing it for me and I no longer see an endocrine specialist.

Good luck!