Hyperthyroidism - daughter just diagnosed

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LZMiner
LZMiner Posts: 300 Member
in Motivation and Support
Looking for someone to share their experience. My 15 yo daughter has had a tough year...just seemed off, was being treated for anxiety and depression, tired all the time, grades suffered second semester...was just falling apart. Anyway, I had her thyroid checked and she has extreme hyperthyroidism--T3 of 17.2 and TSH of <.014. We have an appointment with a pediatric endocrinologist next week, but I'm wondering if anyone here can give me some insight....THANKS!

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  • Bex953172
    Bex953172 Posts: 4,079 Member
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    I've been hypo since 15, so the opposite, sluggish and really tired a lot and forgetful.
    The best thing is to see what the endocrinologist says and I would of thought medication will help the symptoms!

    My mum was hyper and at the age of 40 she had a radioactive iodine to basically fry her thyroid and now she's hypo.
    I think its better to be hypo then hyper but I either way make sure your daughter understands the condition.
    I didn't at 15 and didnf take my medication and I'm now 25 and I've only took it properly for the last 5 years!!

    Good luck at the endocrinologist!
  • Morganbennett1
    Morganbennett1 Posts: 106 Member
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    I was diagnosed with Hyperthyroidism at about the same age. It caused anxiety, insomnia, weight fluctuations, nervousness, etc. Throughout college I took Methimazole and that kept some of the symptoms at bay, but I had nodules in my thyroid that produced too much hormone and they were growing. Throughout college these nodules were watched (ultrasound every 6 months). Once they started become uncomfortable (felt like I had a lump in my throat when swallowing), I received radioactive ablation treatment. They gave me a pill with radioactive iodine and that helped deactivate/kill off some of the nodules. I was charting at normal after the ablation, but in the last few months, have dipped into hypoactive thyroid levels (too little hormone). I am now taking levothyroxine, and after a few adjustments, am doing great. I feel better than I've felt in years!

    I would recommend finding an endocrinologist that you and your daughter are comfortable talking with and that gives you many options on treatments. Make sure to ask about side effects, and also warning signs/symptoms to look out for. When I was Hyperactive, I would get heart flutters that felt like I was having a heart attack, so I wore a heart rate monitor to track and share with my doctor.

    Feel free to direct message me if you have any questions about the process of treatment or my experiences.

    Good luck!
  • LZMiner
    LZMiner Posts: 300 Member
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    Thank you so much for sharing your stories. I have to admit, I'm going through a bit of anger right now, because she sees three specialists and none of them suggested blood work, despite a family history of thyroid issues. The dr treating her anxiety/depression actually seemed offended when I brought it up...refused to write me an order for a blood test, said I should see her general practitioner, because hyperthyroid would be so unlikely...he attributed her 10 lb weight loss to a possible eating disorder and poor nutrition. So glad I followed my instincts. She is textbook hyper....weight loss, thinning hair, tired all the time, always hungry, unable to concentrate...hopefully treatment kicks in fast and age starts her sophomore year feeling more like herself! Thanks again for providing insight....I'll keep you posted on how the appt goes next week.
  • Bex953172
    Bex953172 Posts: 4,079 Member
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    LZMiner wrote: »
    Thank you so much for sharing your stories. I have to admit, I'm going through a bit of anger right now, because she sees three specialists and none of them suggested blood work, despite a family history of thyroid issues. The dr treating her anxiety/depression actually seemed offended when I brought it up...refused to write me an order for a blood test, said I should see her general practitioner, because hyperthyroid would be so unlikely...he attributed her 10 lb weight loss to a possible eating disorder and poor nutrition. So glad I followed my instincts. She is textbook hyper....weight loss, thinning hair, tired all the time, always hungry, unable to concentrate...hopefully treatment kicks in fast and age starts her sophomore year feeling more like herself! Thanks again for providing insight....I'll keep you posted on how the appt goes next week.

    I hate it when Dr's do that!
    Mine got checked at 15 because I went with my mum to her gp appointment for her thyroid and they checked me randomly and turns out I was hypo!

    Nothing more powerful than a mothers instinct!
  • ContraryMaryMary
    ContraryMaryMary Posts: 1,665 Member
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    I was diagnosed hyper at 14 - such an awful thing to have while trying to adjust to puberty. Get her on meds as soon as you can - you'll both be delighted in her transformation when she returns to normality. Ensure she takes them everyday, and get her retested regularly as things can change (I accidentally overmedicated for a few months and got to experience hypo too - just as awful, by the way).

    I eventually had a partial thyroidectomy at age 21 and was fortunate to not need medication following that until I had my second baby nearly 20 years later. I am now slightly hypo and am sure this will change again as I get older!!

    Good luck!!
  • LZMiner
    LZMiner Posts: 300 Member
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    Hello! So daughter's appointment went well. She's starting on 30 mg of methimazole per day. Said they would start high and eventually wean...He basically said that 30% of of patients go into remission and don't have problems again for years, others are more touch and go, and he gave us overviews of Graves and Hashimoto. Because of her age, she's not a candidate for other medications nor radioactive iodine, but he did say if we were unable to control with medication, removing the thyroid would be an option. We feel good because it gave us answers for her many issues and a plan. Of course, while she's excited to get started, it will be an adjustment when her metabolism returns to normal and she can't indulge in giant milkshakes and 4000 calories a day! :-)
  • TheGaudyMagpie
    TheGaudyMagpie Posts: 282 Member
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    I was diagnosed with Graves at 19, and I wanted to tell you that I had a similar experience in that my doctor dismissed my issues and my mother had to push for bloodwork. I was very anxious and would have crying spells for no reason. The thyroid has a significant effect on emotional state.

    I was put on an anti-thyroid drug and did go into remission and repeated the cycle a few times. I found the anti-thyroid drugs to be effective. She will feel much better and as she's young, there's certainly time for her body to adjust.

    I ended up having an ablation about eleven years ago (I was 39-ish) and I regret it as I went very hypo almost immediately and it's been very difficult to calibrate my levels since then (my current PCP says that she has observed this to be fairly common among her post-ablation patients). The anti-thyroid drugs worked fine for me.
  • lilligraz22
    lilligraz22 Posts: 183 Member
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    Hi there. I was diagnosed with hashimoto about 4 years ago. TSH was over 100. My doctor couldn't understand how I even got out of bed. She said that people in my condition were bed bound. I was experiencing all sorts of terrible symptoms but had no idea what was happening. Gained a load of weight, emotional, fatigued etc. Got on meds which took 3 years to stabilize but now am much better. TSH 0.9. I have lots of energy and have lost 13 lbs.
    I know your daughter will feel a lot better too when she's on the proper dosage. Good luck to you both!
  • LZMiner
    LZMiner Posts: 300 Member
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    Thanks for sharing! I have to admit, I'm still pretty bitter that none of the doctors she's been seeing suggested this, and one actually scoffed when I brought it up. The Endo and new general practitioner we've seen have been very informative and caring. My daughter is a travel soccer player and she hasn't been able to run for two years without gasping for air...and the emotional/anxiety/depression have just compounded it. So good to hear from you all that it is treatable, and that she's not alone.
    Happy Saturday to you all!
  • Morganbennett1
    Morganbennett1 Posts: 106 Member
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    I'm glad you found some good doctors that are willing to take the time to discuss options and a plan with you and your daughter. From my experience, they may have to adjust the meds periodically throughout her life (hormones play a big part). But once she is properly adjusted to her meds, she should feel like a whole new person!
  • lisafred24
    lisafred24 Posts: 313 Member
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    Had a similar experience with doctor's and my daughter. She was in her senior year of high school and had a very full plate of activities. She was dealing with a lot of anxiety because of this, our PCP put her on an anxiety medicine. About 6 weeks later at school during choir practice she had a seizure, I took her to the hospital where they basically acted like she was either doing drugs, pregnant or a drama queen. We gave them all her medical history and stated she was on the anxiety medicine. They suggested I take her to a neurologist "just to be sure" but acted like it would be was of my time because there was nothing wrong with her. I took her to the neurologist and they acted the same way with the drugs, pregnancy or drama but said they would schedule her for tests over the next few months and if she had another seizure in the mean time to call them. 1 week later she had another seizure and this time the school called 911. I had them take her to the local children's hospital thinking they would do more for her. But, once again, we were treated like she was either doing drugs, pregnancy, or this time they said faking it. I was furious. I called the neurologist the next day because they said to call if she had another one to which I was informed to go ahead and keep her next appointment that was already scheduled by 60 days away. I was livid. I hung up the phone and called our PCP. He got her in immediately. We went through with him everything that had happened. His first response was that it was the anxiety medicine. He said although seizures are rare with that medicine, they are possible. Really?! I took her to two different hospitals and a neurologist and spent thousands of dollars and nobody could figure this out by my PCP???!!!! Needless to say the surveys they sent me were not positive.

    Glad your daughter is getting help.
  • My_Butt
    My_Butt Posts: 2,300 Member
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    I was just recently diagnosed hyper since other doctors said the nodules were just "fatty tumers", anxiety was a separate mental thing, and my weight loss was from "hyperactivity and overactive lifestyle".

    The mental aspect, I found yoga to be a great healthy way to combat stress, anxiety, and anger when I do it often.
  • LZMiner
    LZMiner Posts: 300 Member
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    lisafred24 wrote: »
    Had a similar experience with doctor's and my daughter. She was in her senior year of high school and had a very full plate of activities. She was dealing with a lot of anxiety because of this, our PCP put her on an anxiety medicine. About 6 weeks later at school during choir practice she had a seizure, I took her to the hospital where they basically acted like she was either doing drugs, pregnant or a drama queen. We gave them all her medical history and stated she was on the anxiety medicine. They suggested I take her to a neurologist "just to be sure" but acted like it would be was of my time because there was nothing wrong with her. I took her to the neurologist and they acted the same way with the drugs, pregnancy or drama but said they would schedule her for tests over the next few months and if she had another seizure in the mean time to call them. 1 week later she had another seizure and this time the school called 911. I had them take her to the local children's hospital thinking they would do more for her. But, once again, we were treated like she was either doing drugs, pregnancy, or this time they said faking it. I was furious. I called the neurologist the next day because they said to call if she had another one to which I was informed to go ahead and keep her next appointment that was already scheduled by 60 days away. I was livid. I hung up the phone and called our PCP. He got her in immediately. We went through with him everything that had happened. His first response was that it was the anxiety medicine. He said although seizures are rare with that medicine, they are possible. Really?! I took her to two different hospitals and a neurologist and spent thousands of dollars and nobody could figure this out by my PCP???!!!! Needless to say the surveys they sent me were not positive.

    Glad your daughter is getting help.

    And that's why they call it "practicing" medicine! Sucks!

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