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Hello - I am new here. I was wondering if anyone else out there has had this experience, or has any input.
My daughter who is ten, was diagnosed with autoimmune thyroiditis in March of 2008. The circumstances around this were very unusual, as she had no hypothyroid symptoms whatsoever. The blood test was a re-check for something completely unrelated and it came back with her TSH at 69! They actually had it done again to make sure there wasn't a lab error!
Anyways, they put her on Levothyroxine, which has been stabilized at 50mcg. Ever since then, she has felt awful more than good, and she is unbelievably emotional and moody, but her test results are normal.
So, to get to the point - - - I hear of all kinds of people that are sure they are hypothyroid, feel awful, but the doctors will not diagnose or treat them. Well, my situation is the opposite - - she felt great until they diagnosed and started treating her!
At this point, because the doctors will not listen to me, I have cut her dose down to every other day, in hopes of reducing it even more - maybe getting rid of it completely and trying natural supplements! Any advice?????
Hello - I am new here. I was wondering if anyone else out there has had this experience, or has any input.
My daughter who is ten, was diagnosed with autoimmune thyroiditis in March of 2008. The circumstances around this were very unusual, as she had no hypothyroid symptoms whatsoever. The blood test was a re-check for something completely unrelated and it came back with her TSH at 69! They actually had it done again to make sure there wasn't a lab error!
Anyways, they put her on Levothyroxine, which has been stabilized at 50mcg. Ever since then, she has felt awful more than good, and she is unbelievably emotional and moody, but her test results are normal.
So, to get to the point - - - I hear of all kinds of people that are sure they are hypothyroid, feel awful, but the doctors will not diagnose or treat them. Well, my situation is the opposite - - she felt great until they diagnosed and started treating her!
At this point, because the doctors will not listen to me, I have cut her dose down to every other day, in hopes of reducing it even more - maybe getting rid of it completely and trying natural supplements! Any advice?????
I would also suggest that she be seen by an endocrinologist if you're not already seeing one. It's not safe to adjust her dose yourself. The thyroid affects many other organ systems and it's something best left to the experts.
She has been seen by a pediatric endocrinologist. That is who her pediatrician referred her to. She told us about the autoimmune end of it. When I try to explain to her what is going on, she just has her blood re-checked and tells me it is normal. Her pediatrician had a ton of blood work done on her to make sure that nothing else is wrong with her, and everything came back normal.
I certainly want to do what is best for my daughter, but after dealing with this for a year with the only results being her decline, I can't help but try to fix things on my own. I am also trying to find a MD that will prescribe Armour (her endo won't), because maybe that would make a difference.
dsh - I can hear the frustration and concern in your post - and I quickly googled autoimmune thyroiditis, because I 'thought' it was much the same disease that I had, called Hashimoto's thyroiditis. They come up together in the 'autoimmune' reference. I would think your daughter would have some symptoms of this. So I'm wondering, if you will share - what had you with her at the doctor when this was 'diagnosed'? When you say she is feeling worse on the med, can you tell us why you feel that way?
I've taken a significate dose of synthroid for about 12 years now - after having my thyroid completely removed in 1997. My gland was acting like a roller coaster on my system - from sky high feeling great on over drive super duper conquer the world well...........to nose diving fatigue barely able to function groggy foggy overall just bummed out.......and we tried to get it lined out with meds for many years prior to surgery and it never was a good fix for me. (I was NOT 10 years old however - this is important for your child) Surgery only became an option when I developed hot and cold nodules that showed 'change' from one scan to the next.
I wish I had better news for you and your daughter, but keeping her on the meds is important, even while you are navigating the ups and downs of learning how to handle this condition. DM me if you want.......
My niece, who is now 16, has been suffering from a thyroid problem they have diagnosed as Hashimoto's disease. Apparently, it's uncommon in the young, and doctors are very hesitant to treat it. My sister-in-law has searched for someone to actually treat her, and it has been a long road. Her initial symptoms included hair loss, irrational behavior, lucid moments which turned to fogggy almost spaced out lapses in the day. She couldn't sleep, had nightmares, and probably many other things of which I am unaware. She is now using a (Armour) pig thyroid medication, and it seems to be helping but it's not perfect. To be honest, I think she has had a problem since she was a young child, and it simply was undetected. If you are not happy with the treatment, keep pounding until you're satisfied. No one knows your child like you do, and you can best determine if she is back to "normal." Unfortunately, like any hormone, there is no perfect balance. Your daughters levels can be within acceptable ranges but can be totally off for her. Go to another specialist, and another, until you are satisfied with the diagnosis and treatment! Good luck.
you must go by your gut instinct as a mother. Don't stop with that one doctor; research the area far and wide for other doctors and take her for another opinion. All doctors are not created equal.
Quote:
Originally Posted by dsh1127
She has been seen by a pediatric endocrinologist. That is who her pediatrician referred her to. She told us about the autoimmune end of it. When I try to explain to her what is going on, she just has her blood re-checked and tells me it is normal. Her pediatrician had a ton of blood work done on her to make sure that nothing else is wrong with her, and everything came back normal.
I certainly want to do what is best for my daughter, but after dealing with this for a year with the only results being her decline, I can't help but try to fix things on my own. I am also trying to find a MD that will prescribe Armour (her endo won't), because maybe that would make a difference.
My daughter who is ten, was diagnosed with autoimmune thyroiditis in March of 2008. The circumstances around this were very unusual, as she had no hypothyroid symptoms whatsoever. The blood test was a re-check for something completely unrelated and it came back with her TSH at 69! They actually had it done again to make sure there wasn't a lab error!
Anyways, they put her on Levothyroxine, which has been stabilized at 50mcg. Ever since then, she has felt awful more than good, and she is unbelievably emotional and moody, but her test results are normal.
So, to get to the point - - - I hear of all kinds of people that are sure they are hypothyroid, feel awful, but the doctors will not diagnose or treat them. Well, my situation is the opposite - - she felt great until they diagnosed and started treating her!
At this point, because the doctors will not listen to me, I have cut her dose down to every other day, in hopes of reducing it even more - maybe getting rid of it completely and trying natural supplements! Any advice?????
I don't have experience with this but have a teen who has been on various meds for a health problem.
You said she had no symptoms which makes me wonder why they are even treating it yet?
I did some googling - FWIW google pediatric autoimmune thyroiditis - you then want to try to find out what the medicine would be to treat along with dose. Some of what I read says it is due to a virus and will go away, so you need to see if that applies to your daughter.
According to what I read there are different tests, so you want to read that and if it applies see about having them do a test (other then blood) on your daughter.
On top of that you have female hormones, at her age she's getting ready to go through changes. Can you tell if she's starting to develop yet? If so, are the mood swings able to be predicted at a certain time every month or are they constant?
Quote:
Originally Posted by dsh1127
When I try to explain to her what is going on, she just has her blood re-checked and tells me it is normal. Her pediatrician had a ton of blood work done on her to make sure that nothing else is wrong with her, and everything came back normal.
I certainly want to do what is best for my daughter, but after dealing with this for a year with the only results being her decline, I can't help but try to fix things on my own. I am also trying to find a MD that will prescribe Armour (her endo won't), because maybe that would make a difference.
Is her blood normal after you've been cutting her dose?
As for what they treat with, doctors use brands that they like.
I mentioned a brand name to one of my daughters doctors, he said it was junk and doesn't use it when people here have suggested this drug and said it saved their life.
Thanks everyone for your input! This has been a hard thing to deal with. I know it's not a terminal illness or anything, but it has caused a great deal of stress in our lives. I never would have thought that would be the case in the beginning - I just thought "Okay, a pill every day, no problem"!
Rottnboys - Thank you so much for your concern and information. It sounds like you have been through alot with this. I think that Hashi's is the same thing, just another name (not completely sure). As far as when she was diagnosed, she was at the doctor as a follow up. She had Lyme disease a little over a year before, which was treated, but her liver enzymes were on the high side. The doctor asked us to come back in and get that re-checked. The liver enzymes were fine, but that's when they found the thyroid problem. Your mood and health symptoms sound alot like my daughter. She has always been an extreme energy person, so the highs don't seem to be alarming - actually they are welcome! But the lows are awful. My reason for saying she is worse on the medication, is that when she went in for this blood test she was energetic, happy and rarely got sick. Even when she had Lyme disease, her only symptom was a rash. Then within about four weeks after starting the Levothyroxine she started getting sick very often, being extremely tired, and very grumpy and uncooperative. I have given this med every benefit of the doubt - telling myself that she just needed to get used to it, or that she was just in a bad mood, or sick (again). This is a girl that has always done great in school, is a competitive gymnast and very outgoing, so it is hard to see such a change for something that never really showed itself as a problem - if you know what I mean! Sorry I rambled on so much - thanks for listeneing!
Roselvr - It is hard to have a kid with medical issues, isn't it. My most frustrating thing is since it is not your body you don't know exactly what they are going through - in my daughter's case, I don't even think she knows what she's going through!
I completely agree with you about treating her with no symptoms. They are treating her based on her test results, which were very abnormal, but it is hard to keep having a good feeling about treating her for this when the treatment is causing problems that she never had before!
Yes, unfortunately for her, she is developing quickly! As mentioned in a prior post, she is a gymnast, so I thought she might develop later, but no such luck! I really expect he to start her period anytime. Her moodiness doesn't seem to have any structure to it, you never know when it will hit!
I haven't had her blood checked since I reduced the dose. It has only been about a week, so I am not sure it would change too much yet. I see what you are saying about doctors and brands - I have asked hers about treating her with Armour (pig thyroid - sounds gross, but I have heard wonderful things about it!) and they all have their different excuses, but I met a Naturopath that says there is no reason not to try it for her. Go figure!!! Looks like I was long winded again - - - OOOPS!
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! They actually had it done again to make sure there wasn't a lab error!
! This has been a hard thing to deal with. I know it's not a terminal illness or anything, but it has caused a great deal of stress in our lives. I never would have thought that would be the case in the beginning - I just thought "Okay, a pill every day, no problem"!
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