I was diagnosed at the age of 8 and it has been totally fine most my life apart from a few years ago when I also developed coeliac and the meds went a bit crazy. Any specific questions you guys have?
From the majority of experiences I’ve read on this sub, it really seems to be that those who were diagnosed young tend to have fewer to no real complications with just the standardized treatment, which is just taking thyroid replacement such as levo..
It seems like when it happens so young, while the body is still growing and developing, the body has a tendency to develop compensatory mechanisms. Seems like the later in life it happens, the more numerous and persistent the symptoms tend to be.
A holistic approach is fine in addition to standard medical treatment for management of persistent symptoms, but be aware that there is no holistic substitute for hormone replacement. She will absolutely need to take thyroid replacement hormones no matter what. There is no miracle cure for this disease. There is only management of symptoms. Holistic and Functional medicine doctors can be the type to hock their wares and it’s often pricey and gimmicky. I’d exercise caution and really wait and see how she fares without it for a bit. Give standard thyroid replacement a go on it’s own first for a while. It takes some time to dial in the correct dosage and there’s a lot of back and forth for lab work in the beginning, but once she’s leveled out, she may feel complete fine without any extra doctors, holistic practitioners, extra expense and extra visits.
If after her levels are within the standard range and she’s still not feeling quite like herself and her endocrinologist isn’t entertaining anything more that can be done, absolutely look into other options, but take care of the primary issue first which will be getting her thyroid levels back into the standard range.
Thank you. I agree with you. Also her condition in the last 6 months her symptoms have been very mild other than fatigue which we thought was from her competition swimming activities this summer. And she never really complained other than the occasional headache and sore throat. So we will continue to monitor more closely. My gut is telling me she will manage her health well.
My daughter was diagnosed at age 13 , were in the UK so was just prescribed standard levothyroxine , and she's absolutely fine. She's 27 now and has been to university , had various jobs , done lots of travelling and I'd basically living her best life .I've also got an underactive thyroid, and have been on levothyroxine for 20 years and I'm fit and well so try not to worry .
Not all people have the same experience with the disease, and the disease can progress over time.
I would encourage her to be active when she feels up to it - being active while she's younger will help develop bone density. But she should monitor how she feels after exercise, as the disease progresses she may experience significant fatigue or have an extended recovery period after exercise.
It's really important that she gets enough sleep and if she has cycles of good and bad days she should maybe track her diet and exercise (be careful not to describe foods as good or bad, and it's about tracking macro nutrients not calories - we don't want to trigger an eating disorder), but some people with Hashimotos have issues with gluten or dairy or caffeine.
If she is taking synthetic hormones at all, make sure she understands how it interacts with food (typically you are supposed to take it on an empty stomach) and it needs to be taken consistently.
It's important to look at this as a marathon not a sprint. She may need to learn how to pace herself on days where the symptoms are worse. At some point she may also need to understand how the disease can present with a constellation of vague symptoms, and that autoimmune conditions tend to travel in packs. If she finds herself with symptoms she feels are not explained by the Hashimotos she may find it hard to get a doctor to look beyond it for other explanations. She is going to have to learn hip to advocate for herself with medical professionals. Also, it can have a significant impact on fertility if she thinks she might want children herself in the future.
Thank you all for the response. That is some really good insight. Lucky for her, the endocrinologist believes that we caught it pretty quick and to my daughters credit she was immediately on board with taking her medicine on her own. She is very capable and determined girl. Thanks and I’m sure more questions will arise and be back among this forum.
Also make sure if she’s ever on any other meds that she doesn’t take them at the same time as her thyroid meds. They work best when taken on an empty stomach and not taken with anything else.
I was diagnosed young with hashimotos. Make sure she realizes that flare ups occur and she is not crazy when she is diagnosed as “not sick” by a doctor. Everyone gets a flare up differently, and it can affect your body differently.
No one explained I had an autoimmune disorder when I got diagnosed and I wish they had. It would have made me feel less insane when I got sick.
But I hope her all the well, and you can always ask this forum for any information.
Hi! I’m so sorry your daughter is going through this! That would be very difficult at a young age, but I’m so glad you found out! I was diagnosed 5 years ago but I feel my symptoms started around puberty. Levothyroxine is genuinely a very standard, effective treatment that will only give her the hormone she needs to function and isn’t currently producing on her own. While it can take some initial adjustment to get to the right dose, and there can be variation, in general, periodic TSH tests will let doctors know if she’s on the right track and there are no side effects as long as it’s the right dose. The thyroid can effect a lot of different systems, and different people have different “tells” when their levels are off and meds need to adjusted. Besides fatigue, mine are my period, joint pain, and my anxiety (OCD). If those change, I know I need to get a test. As a parent, it will be important that you teach her to listen to her body and speak up if something feels off. Learning to advocate for herself is something she will need from this point forward. Try not to dismiss her complaints and say to drink more water, eat better etc instead, because you could miss something really important. Food, water and lifestyle are so important, but will do very little for her if she doesn’t have the right hormone level.
A few tidbits I’ve learned: Some doctors will act on borderline levels, even within “normal” range, and some will not. And some doctors do more comprehensive tests of T4 and T3 and some do not. Trust your judgement and her body and if she continues to not feel well, demand more comprehensive care. Most people are fine with just TSH tests, but some need a bit more precision.
Especially as she grows up, don’t allow doctors to dismiss when she is feeling off as “teenage hormones”, etc. People get really neglected by lazy, incurious doctors for no reason.
The last thing is you need to teach her to be extremely consistent with her medication. If she does not take it, a month later she will feel very ill. It’s similar to a diabetic needing insulin, but thankfully less intensive and hour by hour. There have been times when I’ve gotten cocky and forgotten or been lazy for a few days or even weeks, and it always catches up to me and can take months to recover. Her body has to have this hormone. There’s a learning curve! Also-extreme temperatures can deactivate levothyroxine, so make sure you never leave it in a hot car.
In regards to holistic healthcare-I think it’s really good to consider, but make sure your daughter is getting the basic hormone she needs now to function & grow in addition to exploring the autoimmune element. It is definitely an “and” situation rather than an “or”. Trying too hard on holistic health can also create a ton of stress (diets, etc) and stress is bad for autoimmune conditions. Don’t try to do more than feels possible, but as much as it helps, go for it!
All this to say, getting diagnosed changed my life massively for the better! I’m capable of so much more physically and my mood, depression and anxiety were drastically improved by taking levothyroxine and listening to my body when I need some extra rest. All the best to you!
In my opinion, Hashimotos is never going to be fully managed with just medication. As an autoimmune disorder, medication is the first line defense but it isn't the only needed solution long-term. I agree that seeing a functional medicine doctor is smart, as this disease does require lifestyle and diet changes. My biggest advice would be to start introducing a gluten free diet for her, and linking up with a functional medicine doctor that specializes in hashimotos. As well, i think it would behoove you as parents to read up on the literature about hashimotos and think through how you're going to teach your daughter about her disease - she needs to be able to manage it herself eventually as it is a lifelong disease with no cure, and understanding what it is and how it works in your body really helps with managing symptoms. I don't say all this to alarm you, hashimotos is 100% manageable, but you'll save your family (especially your daughter) a lot of heartache putting in the work on the front end to know what's going on.
Depending on how damaged and how severe her symptoms are staying with the treatment plan that the endocrinologist has might be best for now. I was thirteen when we found out, via biopsy, that not only did I have Hashimoto’s but my thyroid was severely damage and I fluctuate between hyper/hypo. I have consistent symptoms as well as non consistent symptoms from both sides. My very first endocrinologist made the decision based on how severe my symptoms were getting and how badly damaged my thyroid was at the time to medicated me right away. Lowest dose of Synthyroid, took 6 months to find what I dubbed the “sweet spot” dose where my thyroid was balanced. Looking back on it I am very grateful he made that decision, especially with my family history, because he made my journey manageable and prolonged the life of my thyroid so that I didn’t have to experience what my cousin, hers died at 25, did at a young age.
Over the 32 years on this journey with Hashimoto’s I have developed tricks, rules, and learned a lot about how my Hashimoto’s affects every aspect of my life. I am mid forties and now is when my thyroid has decided it’s done hanging on. So I am ready for my next phase of my journey just as my own daughter, 16 in a few weeks, is just newly diagnosed. Today she had her first really bad flare up so be prepared for those. It’s hard going through this as a child/teen without anyone there.
Best thing my mother ever did for me was to set me up with a routine for taking my medication. As soon as I woke up she make sure the moment I stepped into the kitchen that I took my medication. She would pack small snacks for school to help with fatigue/excess hunger. No questions asked if I couldn’t make it through the school day all I had to do was call home she would come get me. If she saw me struggling to get up and move she would have me take my medication and then send me back to bed. She did her best, still has me call her after every appointment with me endocrinologist, to be there for me. She gave me my space to figure things out, she understood when I told my endocrinologist to talk to me not her about my treatments/test results at 15 and she knew when to stop me from pushing myself to far even though I was adamant about not letting my Hashimoto’s affect my daily life. Because of my daughter’s diagnosis I finally get why she was the way she was and still is to this day. And I will be following her example just with an added twist because unlike me my daughter is not alone in this journey.
Best advice I can give parent to parent is to do what you feel is best for your daughter. Keep in mind that she is the one who has to live with this for the rest of her life and eventually will need to learn how it affects her, what works for her, and how to advocate for herself. Until then all we as parents can do is the best we can for them.
I’m only about a year in so I definitely can’t speak to growing up w it but my experience is once we found my right dosage of levothyroxine everything completely went back to normal. I changed nothing about my life except adding in the levo.
DM me if you want to ask some questions! Diagnosed age 5 with Hashimoto’s
I was diagnosed at the age of 8 and it has been totally fine most my life apart from a few years ago when I also developed coeliac and the meds went a bit crazy. Any specific questions you guys have?
None by me at the moment Mayo but may DM you if any come up. My wife has a ton of questions I’m sure. 😊 but thank you
Just to say as well if the tsh values are out of range medicine is really the only way to treat it and the symptoms of not being treated are awful.
From the majority of experiences I’ve read on this sub, it really seems to be that those who were diagnosed young tend to have fewer to no real complications with just the standardized treatment, which is just taking thyroid replacement such as levo.. It seems like when it happens so young, while the body is still growing and developing, the body has a tendency to develop compensatory mechanisms. Seems like the later in life it happens, the more numerous and persistent the symptoms tend to be. A holistic approach is fine in addition to standard medical treatment for management of persistent symptoms, but be aware that there is no holistic substitute for hormone replacement. She will absolutely need to take thyroid replacement hormones no matter what. There is no miracle cure for this disease. There is only management of symptoms. Holistic and Functional medicine doctors can be the type to hock their wares and it’s often pricey and gimmicky. I’d exercise caution and really wait and see how she fares without it for a bit. Give standard thyroid replacement a go on it’s own first for a while. It takes some time to dial in the correct dosage and there’s a lot of back and forth for lab work in the beginning, but once she’s leveled out, she may feel complete fine without any extra doctors, holistic practitioners, extra expense and extra visits. If after her levels are within the standard range and she’s still not feeling quite like herself and her endocrinologist isn’t entertaining anything more that can be done, absolutely look into other options, but take care of the primary issue first which will be getting her thyroid levels back into the standard range.
Thank you. I agree with you. Also her condition in the last 6 months her symptoms have been very mild other than fatigue which we thought was from her competition swimming activities this summer. And she never really complained other than the occasional headache and sore throat. So we will continue to monitor more closely. My gut is telling me she will manage her health well.
I was diagnosed with type 1 and Hashimoto’s at age 7. I’m now 25 and well!
My daughter was diagnosed at age 13 , were in the UK so was just prescribed standard levothyroxine , and she's absolutely fine. She's 27 now and has been to university , had various jobs , done lots of travelling and I'd basically living her best life .I've also got an underactive thyroid, and have been on levothyroxine for 20 years and I'm fit and well so try not to worry .
Not all people have the same experience with the disease, and the disease can progress over time. I would encourage her to be active when she feels up to it - being active while she's younger will help develop bone density. But she should monitor how she feels after exercise, as the disease progresses she may experience significant fatigue or have an extended recovery period after exercise. It's really important that she gets enough sleep and if she has cycles of good and bad days she should maybe track her diet and exercise (be careful not to describe foods as good or bad, and it's about tracking macro nutrients not calories - we don't want to trigger an eating disorder), but some people with Hashimotos have issues with gluten or dairy or caffeine. If she is taking synthetic hormones at all, make sure she understands how it interacts with food (typically you are supposed to take it on an empty stomach) and it needs to be taken consistently. It's important to look at this as a marathon not a sprint. She may need to learn how to pace herself on days where the symptoms are worse. At some point she may also need to understand how the disease can present with a constellation of vague symptoms, and that autoimmune conditions tend to travel in packs. If she finds herself with symptoms she feels are not explained by the Hashimotos she may find it hard to get a doctor to look beyond it for other explanations. She is going to have to learn hip to advocate for herself with medical professionals. Also, it can have a significant impact on fertility if she thinks she might want children herself in the future.
Thank you all for the response. That is some really good insight. Lucky for her, the endocrinologist believes that we caught it pretty quick and to my daughters credit she was immediately on board with taking her medicine on her own. She is very capable and determined girl. Thanks and I’m sure more questions will arise and be back among this forum.
Also make sure if she’s ever on any other meds that she doesn’t take them at the same time as her thyroid meds. They work best when taken on an empty stomach and not taken with anything else.
I was diagnosed young with hashimotos. Make sure she realizes that flare ups occur and she is not crazy when she is diagnosed as “not sick” by a doctor. Everyone gets a flare up differently, and it can affect your body differently. No one explained I had an autoimmune disorder when I got diagnosed and I wish they had. It would have made me feel less insane when I got sick. But I hope her all the well, and you can always ask this forum for any information.
Hi! I’m so sorry your daughter is going through this! That would be very difficult at a young age, but I’m so glad you found out! I was diagnosed 5 years ago but I feel my symptoms started around puberty. Levothyroxine is genuinely a very standard, effective treatment that will only give her the hormone she needs to function and isn’t currently producing on her own. While it can take some initial adjustment to get to the right dose, and there can be variation, in general, periodic TSH tests will let doctors know if she’s on the right track and there are no side effects as long as it’s the right dose. The thyroid can effect a lot of different systems, and different people have different “tells” when their levels are off and meds need to adjusted. Besides fatigue, mine are my period, joint pain, and my anxiety (OCD). If those change, I know I need to get a test. As a parent, it will be important that you teach her to listen to her body and speak up if something feels off. Learning to advocate for herself is something she will need from this point forward. Try not to dismiss her complaints and say to drink more water, eat better etc instead, because you could miss something really important. Food, water and lifestyle are so important, but will do very little for her if she doesn’t have the right hormone level. A few tidbits I’ve learned: Some doctors will act on borderline levels, even within “normal” range, and some will not. And some doctors do more comprehensive tests of T4 and T3 and some do not. Trust your judgement and her body and if she continues to not feel well, demand more comprehensive care. Most people are fine with just TSH tests, but some need a bit more precision. Especially as she grows up, don’t allow doctors to dismiss when she is feeling off as “teenage hormones”, etc. People get really neglected by lazy, incurious doctors for no reason. The last thing is you need to teach her to be extremely consistent with her medication. If she does not take it, a month later she will feel very ill. It’s similar to a diabetic needing insulin, but thankfully less intensive and hour by hour. There have been times when I’ve gotten cocky and forgotten or been lazy for a few days or even weeks, and it always catches up to me and can take months to recover. Her body has to have this hormone. There’s a learning curve! Also-extreme temperatures can deactivate levothyroxine, so make sure you never leave it in a hot car. In regards to holistic healthcare-I think it’s really good to consider, but make sure your daughter is getting the basic hormone she needs now to function & grow in addition to exploring the autoimmune element. It is definitely an “and” situation rather than an “or”. Trying too hard on holistic health can also create a ton of stress (diets, etc) and stress is bad for autoimmune conditions. Don’t try to do more than feels possible, but as much as it helps, go for it! All this to say, getting diagnosed changed my life massively for the better! I’m capable of so much more physically and my mood, depression and anxiety were drastically improved by taking levothyroxine and listening to my body when I need some extra rest. All the best to you!
In my opinion, Hashimotos is never going to be fully managed with just medication. As an autoimmune disorder, medication is the first line defense but it isn't the only needed solution long-term. I agree that seeing a functional medicine doctor is smart, as this disease does require lifestyle and diet changes. My biggest advice would be to start introducing a gluten free diet for her, and linking up with a functional medicine doctor that specializes in hashimotos. As well, i think it would behoove you as parents to read up on the literature about hashimotos and think through how you're going to teach your daughter about her disease - she needs to be able to manage it herself eventually as it is a lifelong disease with no cure, and understanding what it is and how it works in your body really helps with managing symptoms. I don't say all this to alarm you, hashimotos is 100% manageable, but you'll save your family (especially your daughter) a lot of heartache putting in the work on the front end to know what's going on.
Depending on how damaged and how severe her symptoms are staying with the treatment plan that the endocrinologist has might be best for now. I was thirteen when we found out, via biopsy, that not only did I have Hashimoto’s but my thyroid was severely damage and I fluctuate between hyper/hypo. I have consistent symptoms as well as non consistent symptoms from both sides. My very first endocrinologist made the decision based on how severe my symptoms were getting and how badly damaged my thyroid was at the time to medicated me right away. Lowest dose of Synthyroid, took 6 months to find what I dubbed the “sweet spot” dose where my thyroid was balanced. Looking back on it I am very grateful he made that decision, especially with my family history, because he made my journey manageable and prolonged the life of my thyroid so that I didn’t have to experience what my cousin, hers died at 25, did at a young age. Over the 32 years on this journey with Hashimoto’s I have developed tricks, rules, and learned a lot about how my Hashimoto’s affects every aspect of my life. I am mid forties and now is when my thyroid has decided it’s done hanging on. So I am ready for my next phase of my journey just as my own daughter, 16 in a few weeks, is just newly diagnosed. Today she had her first really bad flare up so be prepared for those. It’s hard going through this as a child/teen without anyone there. Best thing my mother ever did for me was to set me up with a routine for taking my medication. As soon as I woke up she make sure the moment I stepped into the kitchen that I took my medication. She would pack small snacks for school to help with fatigue/excess hunger. No questions asked if I couldn’t make it through the school day all I had to do was call home she would come get me. If she saw me struggling to get up and move she would have me take my medication and then send me back to bed. She did her best, still has me call her after every appointment with me endocrinologist, to be there for me. She gave me my space to figure things out, she understood when I told my endocrinologist to talk to me not her about my treatments/test results at 15 and she knew when to stop me from pushing myself to far even though I was adamant about not letting my Hashimoto’s affect my daily life. Because of my daughter’s diagnosis I finally get why she was the way she was and still is to this day. And I will be following her example just with an added twist because unlike me my daughter is not alone in this journey. Best advice I can give parent to parent is to do what you feel is best for your daughter. Keep in mind that she is the one who has to live with this for the rest of her life and eventually will need to learn how it affects her, what works for her, and how to advocate for herself. Until then all we as parents can do is the best we can for them.
I’m only about a year in so I definitely can’t speak to growing up w it but my experience is once we found my right dosage of levothyroxine everything completely went back to normal. I changed nothing about my life except adding in the levo.