Children with Hashimoto’s disease

Daughters both

I, Janie Bowthorpe, am lucky. My children grew up to be adults without a thyroid problem or Hashimoto’s.

But not all parents and loved ones of children get that lucky. Some children are outright born with a thyroid problem. It’s called Congenital hypothyroidism. The Merck Manual states it occurs in about 1 out of 2000-4000 live births. And about 10 to 20% are inherited. The usual reasons involve dysgeneis of the thyroid gland (absence or underdevelopment) or dyshormonogenesis of the thyroid (abnormal thyroid hormone production).

Then comes children who acquire a thyroid problem during their childhood years.

For most children, that acquired problem is Hashimoto’s thyroiditis. It’s the autoimmune version of hypothyroidism. Symptoms can be similar to adults, such as vacillating between hypo- and hyper- symptoms because of the attack on the thyroid, dry hair, easy fatigue or poor stamina, weight gain for some, or weight loss for others, constipation and more.

I’d like to introduce you to Cindy Kennedy.

Cindy Kennedy and her daughters

She’s a mother of two young children – both of whom have Hashimoto’s. She’s also the author of Help! My Child Has Hashimoto’s and owner of Nutrition Navigator, a Nutritional Medicine Practice in Grafton, NSW of Australia. As a qualified Nutritional Medicine Practitioner as well as a mother, she is passionate about raising awareness in the community on the plight of families living with invisible illness and helping people overcome their autoimmune and thyroid disease. She wrote the following just for readers of Stop the Thyroid Madness….

How doctors may not get it

Aching legs?? Oh they’re just growing pains?.
Constipation?? Oh that’s normal in children?.
Food intolerances?? She might grow out of it?.
Fatigue?? She’s probably just about to have a growth spurt?.

Sound familiar? These were the early warning signs that something wasn’t quite right’ with our daughter, and the ‘excuses’ used to fob us off. It wasn’t until she ended up in hospital just after her 8th birthday after not passing a bowel movement in over a month that they took my concerns seriously. That’s when she was finally diagnosed with Hashimoto’s.

How Hashimoto’s finally became common

According to Michael Friedman ND, diseases of the thyroid were not common in 1967. However, by 2015, it’s one of the most common things in medical practice.1

Daughter 2

Hashimoto’s is most prevalent between the ages of 45 and 65 years and is more common in women than in men, with female predominance in a ratio of 10:1 to 20:1. Although it is primarily a disease of older women, it can occur in children and is a major cause of nonendemic goiter in children.2

Studies by Hunter et. Al. have estimated rates of hypothyroidism in people younger than 22 to be between 0.113% – 0.135% and they note that these values are at least twice those of previous estimates3 showing a marked increase in frequency as is seen among most autoimmune conditions over the past 50 years.

Children with Hashimoto’s

Autoimmune hypothyroidism is still considered relatively uncommon in children, to the point where I had one doctor say to me Oh no, she can’t have Hashimoto’s – children don’t get it. The look on his face was priceless once he checked her notes to see her pathology and medications!

This lack of awareness also extends into the community.  While many women have been living with the condition for years, they are often shocked to find out that both of my young daughters, now aged 10 and 13 have it.  This lack of awareness has been our biggest hurdle over the past 2 and a half years, as peer support from other families is vital when you are facing a chronic childhood illness.  While my girls are fortunate in that they don’t have to have daily injections like a diabetic child, they do have to have blood tests at least every 12 weeks, attend a continual onslaught of doctors’ appointments, take medications and supplements and live with the many and varied symptoms on a day to day basis. 

Daughter 1

As with adults, Hashimoto’s manifests in a myriad of ways in children.  Some have weight gain while others struggle to put weight on.  Fatigue, along with joint and muscle pain are common, as is thin, brittle hair and brain fog.

We have been exceptionally fortunate in that we have had full support from both of their schools. We have actively involved their teachers and principals every step of the way to let them know what is going on – especially with regards to school attendance. Other families have turned to homeschooling to provide a more individualized and supportive learning environment for their child.

Finding your new normal as a family

As a family, I think the most important thing is to find your new normal. You need to be able to support their additional needs without fussing too much and smothering them. They still need their independence and to live a normal childhood – just with a few modifications. For our youngest, this means only attending school 4 days a week, so that she can stay home on Wednesdays to rest. For our 13 year old, it means making sure she eats properly, gets adequate exercise, and drinks enough water. Like anyone living with a chronic illness, it’s about figuring out their individual needs and catering to them.

A book about Hashimoto’s in children

If you would like to know more about autoimmune hypothyroidism in children, feel free to check out my book (available on Amazon http://amzn.to/1MCYAGG). I wrote it to help spread awareness that thyroid disease affects children, and to provide some much needed support to other families walking this journey, It not only tells our story, but I’ve also tried to include all the tidbits of information I wish we had known at the beginning. All the little things that no-one ever tells you.

Thank you so much to Janie and Stop the Thyroid Madness for allowing me to share my family’s story and to help spread the message that hypothyroid kids and their families need support too!

From Janie Bowthorpe of Stop the Thyroid Madness: I strongly recommend her book if you suspect or know your child has Hashimoto’s disease.

************************************************************************

Hashimoto's: Taming the Beast
Check out the book for adults with Hashimoto’s!!
https://laughinggrapepublishing.com

Important note: STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.

Write a new comment below

65 Responses to “Children with Hashimoto’s disease”

  1. Amber

    Hey, I know this is a long quiet thread, but…I am 36 and have had hypothyroidism my entire life. I don’t know what “normal” feels like, so I can’t miss it. What I can say though is that I am ok, and that your daughters will be ok. My mother was told by the doctor who diagnosed me at just days old that if you had to choose a chronic condition for your child this is what you should choose. People my age are being commonly diagnosed with hypothyroidism now and I am here telling them it isn’t so bad, it can be managed and offering tips to make this easier. Your daughters will be well versed experts by the time their friends start getting diagnosed.

    Reply
  2. Laurie Willette

    I have congenital hashimotos. I remember my mom telling me of all the doctors she took me to because she believed I had a goiter. None of the doctors would diagnose me because it was an old person’s disease. Then when I was 7 and had a huge goiter, my mom found a doctor who would test me. I was the first child in New York State to be diagnosed. By the time I was 11, the goiter still hadn’t gone away so my mom opted for radioactive iodine which killed the thyroid. It has been a ride in my 58 years but doctors are now becoming more aware of hashimotos.

    Reply
  3. Katie

    I am so grateful for this website! Thank you!! 🙂 I was just diagnosed with Hashimoto’s. My endo suggested we test my 8-year-old daughter for hypo because she is suffering from severe constipation. Her TSH came back at 2.36 (scale .5-4.30). Her Free T3 is 2.9 (scale: 3.3-4.8), and her Reverse T3 is 19 (scale: 8-25). Her antibodies are less than 1, which is good! I don’t know what “normal” levels for a child would be. Can anyone enlighten me? Thank you!

    Reply
  4. Gayl Hamilton

    I am a somewhat functional med family practice doc treating an Amish family with a strong family h/o Hashimoto’s.
    An 8 year old female child has markedly abnormal levels TSH 5.9, fT4 1.05, fT3 5.0 most recently. Previous testing shows no thyroid antibodies, a fT3/rT3 ratio of 51.2 (!!!), and markedly elevated cortisol levels. Also anemic with adequate iron levels, but lowish ferritin.
    Diet is poor, tons of food intolerances, headaches, constipation, fatigue. I can find tons of good info on treating adrenal issues and pooling in adults, but really can’t find much in the medical literature for children. Any thoughts on where I can find reference values, or any guidance for this?
    BTW this site is amazing and I have referred many patients to it!

    Reply
    • Janie Bowthorpe

      It’s NOT easy to find those reference values for children. Most of what you see on STTM was obtained via our observation and experiences as adults. But there is a good Children’s group on Facebook (parents of those children) called FTPO Children which might help…but do NOT say you are a doctor, nor refer to “patients”…nothing like that should be on your facebook page–they won’t let you in: https://www.facebook.com/groups/FTPOCHILDRENS/

      Reply
  5. Julie Cinquina

    What are optimal Free T3 and Free T4 ranges for a thirteen year old girl?

    Reply
  6. Wendy

    Hi, everyone. I see that this post has not been active for several months, but I am hoping someone will see this and let me know if I am in the right place.

    First of all, I hope you and your children are all doing well.

    Please allow me a few minutes to give a backdrop to my son’s story. I have a little boy who just turned 8. He is a generous and loving little guy. However, he has been intermittently fatigued and anxious for a few years. When he was around four years of age, he had a few episodes of extreme fatigue where his eyes would become puffy and tired. He would be inflexible and easily provoked to a short spurt of pretty intense verbal aggression when he looked this way. Then he would quickly level out with his anger, but the fatigue remained. I thought he may have had a bit of hypoglycemia because he pepped up temporarily with a snack and a little sports drink. Since then, he has had more episodes and seems to have a great deal of difficulty managing his emotions and getting overwhelmed/overstimulated. He has been sensitive to sports, being fatigued for a day or two after his games, an afternoon at the beach, and most recently completely drained about one hour into a county fair. These episodes have almost all responded well to him being refueled with food so again I thought reactive hypoglycemia. This summer has seen his symptoms reemerge and they are the worse yet. He has episodes of being overheated. A few of extreme cold, but mostly just overheated and sweating when most people would not. He is fatigued more than not. It is obvious to those of us that know him that he just doesn’t feel well. He could not explain how he felt only saying when prompted that he felt weird and that his heart was beating hard. Visits to the pediatrician weren’t helpful as she wasn’t very concerned and just recommended melatonin for sleep and karate. After a few verbally aggressive episodes during times where again his eyes were puffy and he was clearly fatigued a few weekends ago, we decided to run him into the E.R. as it was a Sunday and we knew if he was having blood sugar issues we needed to try to catch labs for him while he was symptomatic. They found a TSH of 16.8, a normal t4 and a high t3 at 4.9. We were sent to a ped endo. He went in almost 3 weeks after the initial labs. She did not run anymore on this visit and prescribed levo for him in light of my family history of Hashis and autoimmune disease. She did check his blood sugar which was fine at the time. She said she would run labs in 8 weeks along with an ultrasound. She is a super nice sympathetic lady. But I am very concerned about what will happen with the levo. He is already so anxiety ridden and feels awful. I do not understand if the higher t3 will level out with levo or could increase making his symptoms worse. His symptoms this summer have all been very paradoxical but mostly indicative of hyperthyroidism.

    Side note, I am not blaming the thyroid alone for his anxiety, but I will say it at the very least takes a slightly nervous child and leaves him very sensitive and terrified of certain things. When he is scared, it comes across as anger. Fight or flight. Adrenaline. He just cannot seem to handle the adrenaline. He will be evaluated soon for communication, frustration tolerance and anxiety among other things because I do realize Hashis can have many ups and downs and I would like him to have as many cognitive tools as possible to tolerate the ride. Also, he is not at all depressed. He is a resilient little guy with a love for life and he will insist upon playing and just doing life even when he feels his worst. I wonder if he’s been surviving on adrenaline tog et him through.

    I have spent hours searching the internet for solid health information and studies but also others that have walked before me that can offer some guidance. My son seems to have been suffering off and on for the past few years and I just want him to know what it is like to actually feel good. If anyone on here has any thoughts or advice for any component of my post, your time is very much appreciated. Thank you so much for reading this.

    Reply
    • Sar

      Your son’s symptoms and your description of his behavior, especially his reactions to stress and fear are EXACTLY like my son’s. He was diagnosed with Hashi and hypo just recently. I realize this is an old post, but I just wanted to say I so empathize and I am so sorry for all the stress and worry I know comes with this. Hope progress and positive things have happened for you and your son since this post.

      Reply
    • Tara Celano

      Try looking into dysautonomia. That might explain the temperature intolerance. My 9 year old daughter has Hashimoto’s as well as dysautonomia and it often reeks havoc on her little body. I wish you and your little one well as I know just how hard it is to see your baby suffer.

      Reply
  7. Traci

    I’m so happy to find this page! My daughter’s doctor is not helpful. She is a very tall 14-year-old (5’9), with beautiful, healthy hair But other than that she struggles. She’s always tired. No matter what we do, she’s tired. Disney, cruises, the beach, homeschool, traditional school, karate, sports, no activities at all, and she’s always tired. I thought she would light up at Disney. Instead, she was overwhelmed and so tired we nearly dragged her through the park. When on the cruises, she just wanted to watch movies in the rooms. at home, she sits with her art, does her chores and school and we take walks and she has started doing yoga with me. She has moderate social anxiety and underlying depression for which we are using counseling on a weekly basis. She rarely wants to leave the house and her friend circle is mostly via texting. Her body aches and I’ve always thought, “wow, she has a lot of growing pains.” I blamed her achiness on growing so tall or maybe that she just needed attention. She had pretty severe eczema and peeling skin until we put her on a gluten-free dairy-free diet. I have had her regular doctor run all the tests I could think of on her and the only result is that she has MTHFR gene mutation so we have her on L-methyl folate along with the other vitamins needed to make that effective. There’s been little improvement. I now have her on Lugol’s iodine and that has helped pick up her energy a bit but she’s still tired and she’s still anxious with moderate anxiety. And THEN, my new GYN (who no longer accepts new patients), discovered I am hypothyroid with testing for Hashimoto’s. I think back through my life and realized I must have been hypo for a LONG time. I’m wondering if my daughter is, too. thankfully, my doc put me on NatureThroid and I’m starting to come back to life. Now to try to find a doc that will test her appropriately. Oh, and she gets lots of colds and sinus infections. She gets heartburn, nausea and she acts like she has ADD (not ADHD). We eat healthy, lots of fruit/veggie smoothies, raw fruit and lots of veggies with minimal fast food or processed food. I just want her to be happy and have a life. I’ve sat in so much guilt wonering what I have been doing wrong with her but after discovering my own thyroid issues I’m starting to see a link. BTW, almost everyone on my maternal side has had thyroid cancer or had their thyroid removed for some reason. Wow, it feels so good to post this and know that empathetic people will be reading. Please comment! Thank you and lots of love!

    Reply
  8. Marieta McC

    Hello Janie, Happy New Year ! I know that there is an STTM support group for parents of children with Hypothyroidism, but what about the children with HyperThyroidism … ? I was hoping to find some information about children with HyperThyroidism in the article above, but did NOT find anything that pertains to Graves’ Disease. Is there a reason for that?

    Reply
  9. Bec Simms

    I understand completely where you’re coming from. While you were diagnosed earlier than me, from the age of eight I had the same battle. The doctors in the UK do seem determined to diagnose or treat just on the TSH test which often leaves us completely crippled for many years if not life!

    Do you have the option of removing yourself from your current GP practice and relocating to another more thyroid friendly one? While good thyroid friendly NHS doctors are as rare as hens teeth, there are some around. If you’d like to talk further off-line or perhaps join our group I could maybe assist you in finding a more friendly doctor. Drop a note below if you’re interested and we can chat further. Please know that you are not alone, in your illness or your frustrations 🙂

    Reply
  10. Kloe Gregory

    Hi guys my names Kloe, I was diagnosed with hypothyroidism at 3 weeks old. I’ve been on levothyroxine all my life fluxing from 50mg all the way too 550mg. I live in north wales, I’m now 22… I’ve battled with my doctors all my adult life, i feel like my medication isn’t really doing much for me. I’ve tried talking to my doctor but he just says I’m fine. I need to sleep more? I sleep a good 8/9 hours every night and nap on my break in the day? Finding another doctor where I live is pretty difficult because it’s a village in the middle of nowhere. I was just wondering if any of you guys had tips too make me more awake and alive. Thank you xo

    Reply
  11. cathy poland

    Hi, need to order another bottle of Erfa 125mg. My present one is April ’17 batch. I’ll try to get another of that date. Though not as good as the ‘old’ ones, seems better than other dates I’ve tried. Can anyone recommend other ‘good’ batches I can ask for at the pharmacy?

    Reply
  12. Jess

    Janie, I didn’t know where to ask this, so sorry it’s not really related to the article. I’ve had Hashi’s for 21 years and have never felt normal on levothyroxine. My free t3 plummeted in the last 6 months and my GP started me on dessicated thyroid (what I received from pharmacy was manufactured by Acella) in addition to the levo. I was just re-tested and am now hyper so am assuming he’s going to reduce the levo. However, despite being hyper I had mixed symptoms and was still extremely fatigued and depressed (can barely keep up with the dishes), so I asked him to also check my reverse t3. He agreed, and the sample was collected at the same time as the one for tsh, free t4 and free t3. But the lab lost my reverse t3 sample, so I had to go back and have it re-collected. My question is whether it makes a difference that the samples were not taken simultaneously, but five days apart. Thanks and Happy Holidays.

    Reply
  13. Lin

    I have a question…I am 35 and just had my 3rd child. My eyes have recently been opened to what’s been going on in my body for years…undiagnosed hypo! Thanks, Janie, for this fabulous site. I am working with a fabulous Dr. Who is willing to try me on t3 only. This was my request because I suspect that I have a conversion issue and didn’t feel well on NDT. Do you think that taking t3 only while nursing might effect my daughter’s thyroid health in the future? I’m wondering if I have thyroid issues today because my Mom started taking Synthroid (only t4) when she was nursing ME?!?

    Reply
    • Janie Bowthorpe

      Hi Lin. There are many nursing mothers in patient groups who report they do well with nursing and being on NDT, so perhaps the same positive reports could happen with T3-only. 🙂

      Reply
      • Lin

        Thank you for your reply, Janie! I’m pretty sure that I would feel good on the t3, but am concerned that if some of it made it through my breast milk to my baby that it (being only t3 and not the full spectrum like NDT) might wonk out my daughter’s thyroid. Any additional thoughts? Thank you!!!

        Reply
  14. Traci

    I have been trying to join the Yahoo Group listed as a resource to find a doctor but keep getting an error message that the code isn’t correct. I even tried the audio code. Is the Yahoo group still active?

    Reply
  15. T. Bareo

    We are just beginning our journey with Hashimoto’s. My 13 year old daughter has been having issues for 2 years. Classic hypo symptoms. I have thyroid myself, but the tsh and Free t4 were always normal, until this past week. Her TSH came back normal, yet higher, at 3.8, but still not in the optimal range. Her free t4 was 1.2. Both sets of thyroid anitbodies were high. We still have not had an official diagnosis, but her pediatrician is leading toward Hashi’s. We will see an endo soon. Any advice would be great as we begin this journey!

    Reply
  16. Jane Shields

    I was diagnoised Hypothyroid at age 36. I was not fertile and starved myself on diet pills and took vitamins. it was the “Diet pill Dr.” that diagnosed my hypothyroidism. After 1 year on Synthroid, I became pregnant. Later, on Synthroid, I no longer felt well. Since puberty, I have always needed more sleep than other people. Now, at 56 years of age, I am fatigued again since Forest Pharma. makers of Armour Thyroid was purchased. I was on Armour Thyroid 180MG I was switched to Acella NP 180MG and it dissolves very easily sublingually; however, my doctor doesn’t want to raise my dosage to make up for the time when the Armour Thyroid potency was comprised. (Armour didn’t even smell the same. Try getting your Dr. to understand that.) I believe that Acella NP is a more potent medicine; however, I cannot talk my doctor into raising my medication for when I felt poorly on Armour. Sigh–Hypothyroid–It is a constant battle. My 17 year old son is hypothyroid, too, and that is a whole other story.

    Reply
    • Cindy Kennedy

      Hi Jane,
      I totally understand how you feel. Finding the “right” doctor is a journey unto itself. The thing that really amazes me is not only how differently Hypothyroidism manifests between people, but also how it can change within the one person as they progress through life. It constantly needs to be reassessed and management of it tinkered with. Your son is very fortunate though to have a Mum who understands what he is going through and who is no doubt very proactive in his care. To even have a diagnosis for him is huge as so many doctors are blindsided thinking it is a disease of middle-aged women, and will not even consider it in children or males. If you are having problems communicating with your doctor, I can only recommend that you ask around for a second opinion, or perhaps look into a Natural Medicine Practitioner to work alongside your doctor to support you from as many different angles as possible.
      Wishing both you and your son the best of health,
      Cindy

      Reply
  17. Zoila

    Hey Cindy , my name is zoila I’m 14 and I been having a lot of these symptoms I have been really tired and just out of it my hip joint really hurt like if someone stabbed me & really patchy coarse hair But my hairs always been really soft until like recently& I’ve been gaining weight like crazy but I have just been eating regular meals . I also have had a bad headache yesterday were I couldn’t even do my work I just was laying down all day because I couldn’t take the pain. Idk what it is but I was just asking if you know if it could be this or something like it .

    Reply
    • Janie Bowthorpe

      Zoila, feeling really tired, gaining weight, coarse hair, headaches, pain could be symptoms of hypothyroidism. Ask you parents to get the right testing for you, which is listed here and not always what doctors are knowledgeable enough to do: https://stopthethyroidmadness.com/recommended-labwork Then compare those results to this page: https://stopthethyroidmadness.com/lab-values because it’s not about just falling in range.

      Reply
    • Cindy Kennedy

      Hi Zoila,
      You have definitely described many of the classic symptoms of hypothyroidism. It is very important that you get your parents to take you to your local doctor to get checked out. The links Janie has given you are fantastic resources to have a read about the tests you need to ask for and what the results mean. Make sure you get a copy of your tests to bring home so that you can go through them after reading the articles, and also so that you have a baseline for any tests that need to be done in the future. The best way to achieve optimal health in any case is to educate yourself and your family, but especially when it comes to hypothyroidism.
      Best of luck!
      xo

      Reply
  18. Jennifer Vitiaci

    I am 47 now with Hypoactive and Hashimoto. I was diagnosed Hypo at the age of 12. I was also a competitive tennis player thru college. I was on synthroid at that time and it worked for me. As I aged my Hashimoto came into play and my amazing new Dr who did 28 blood tests and continues to help me and has changed my life switched my meds to Armour and many supplements. I feel for these kids. I lived it. I hope they get the right Dr because it was key and they feel better sooner than later. 🙂

    Reply
    • Janie Bowthorpe

      Jennifer, that is so common for Synthroid to work for young ones for awhile, then to turn around and not work. 🙁 It’s too bad doctors aren’t knowledgeable enough to put ALL children on natural desiccated thyroid from the beginning. Glad you found NDT! By the way, see the STTM post two below this one about Armour tripling in price compared to other brands!

      Reply
    • Cindy Kennedy

      We’ve been so fortunate in that we’ve been able to keep our 13yo off medication so far which has been huge for us. For our little one, she is on Eutroxsig (synthetic T4) as that is all our doctors will prescribe (and we have been to many). I support them as best I can with diet, lifestyle and natural medicine though and we do the best we can with what we have. So far she is doing okay on it, but we will deal with the future as it plays out. I am so happy for you that you have such an educated doctor who is treating you as a person, not the disease, and that you have been able to switch medications. It gives hope to the rest of us that the allopathic system is slowly changing for the better!

      Reply
  19. Susan Kanen

    From this article:
    “According to Michael Friedman ND, “diseases of the thyroid were not common” in 1967…However, by “2015, it’s one of the most common things in medical practice.”1. ”

    Coincident with increasing rates of water fluoridation and other increasing rates of fluoride exposure?

    At 60 years old and with lifelong fluoride exposure and many ailments improving after avoiding fluoride for the last 30 months: parathyroid hormone from high at 100 units to midnormal at 43 units, thyroid goiter down to 60% of previous size, antibodies against thyroid down, no more kidney stones or pancreatitis, less neurological symptoms, healed GI tract etc.

    Reply
    • Cindy Kennedy

      Yes, I think fluoride (and also the chlorine) in drinking water is a contributor, although not in my girls’ case as we live in the country and only have rainwater. 🙂 There are so many chemicals around in our daily lives now that you can’t avoid them all. I had significant radiation exposure in my early 20s (before having children, not during pregnancy) as I was a Radio Operator in the Royal Australian Navy. It had a significant impact on my health at the time (5 breast lumps, a CIN III and a bone tumour – and I have no family history of any of them) so I do wonder if it may have also been a contributing factor.
      Well done on your success though Susan! That is wonderful! Very inspiring for all of us. 🙂

      Reply
  20. Marg Leach

    I was diagnosed with hashimotos @ 12. I was told very little as were my parents. I am now 47 and am learning for the first time via Cindy what it is all about. Answers alot of questions. Cindy you are one amazing lady.

    Reply
  21. Sarah

    My daughter didn’t grow in height between the ages of 8 and 11. Her pediatrician attributed this initially to her being a competitive gymnast. But since she was often exhausted, had joint swelling, and experienced a lot of constipation, he finally tested her for Hashimoto’s and bingo! At first her endocrinologist couldn’t believe that the Hasimoto’s alone could cause her growth delay, so my daughter was tested for Celiac, Turner’s, Growth Hormone Deficiencies, etc. Everything else came back negative. But at age 11, her bone and hormonal age was 8. So she went on L-thyroxine, and for a year not much happened. So then we cut out gluten and soy and increased her dosage – she grew two inches the year after that, and then 5 inches the year following. She is now 14 with a bone age of 12.75 so she has caught up significantly (and at 5’1 a respectable adult height). Her endocrinologist now has a completely different view on her treatment seeing how my daughter’s food sensitivity probably contributed to her body’s malfunctioning. We are so happy about her growth, but the realization that the maintenance of her disorder will probably be a life long struggle is all too clear…..

    Reply
    • Janie Bowthorpe

      Sarah, that is so wonderful about her growth and the discovery of the how important it was to remove gluten and soy from her diet. Especially gluten. So many Hashi’s patients do better removing it from their diet. Did you know about selenium lowering the anti-TPO antibodies? This can help: http:/www.stopthethyroidmadness.com/selenium. Also, there are a lot of Hashi’s patients who soar on Natural Desiccated Thyroid. You can explore it for her, as well: https://stopthethyroidmadness.com/hashimotos/

      Reply
    • Cindy Kennedy

      Hi Sarah – yes, my 10yo had also stopped growing just prior to her diagnosis and she was also losing weight which was a real worry. Her thyroid has sustained a significant amount of damage, so like your daughter, we think this will most likely be a lifelong condition for her. Having said that, we have implemented some significant dietary changes (from what was already a very healthy diet) and made a few lifestyle modifications and the improvements we have seen over the past 2 years have been absolutely amazing! It is so important to stay positive and focussed on their abilities. Best of luck for the future!

      Reply
  22. Stephanie

    My 15 year old son was just diagnosed with hypothyroidism last May. His first and worst symptom was severe penile pain. He had it for about a month when he was 8, and then it just went away. When he was 13 it came back, along with fatigue, constipation, acid reflux, headaches, and more.

    He saw a paediatric urologist, anxiety specialist, several different GPs, an orthopaedic doctor, and an paediatric endocrinologist, none of whom could figure out what was wrong with him. The endo told us that he definitely had no hormone issues and couldn’t be hypothyroid because he was tall – his height was perfectly between my husband’s and my height.

    She ignored his extremely puffy face, bloated body, massive weight gain, extreme tiredness (he had to lie down during the appointment) and all of his other symptoms and told my son it was all in his head. She wouldn’t run any blood tests.

    2 days later I made an appointment with a functional medicine Internist I found on a thyroid advocacy website. 3 weeks later he diagnosed my son with Hypothyroidism and started him on NDT.

    Now almost 6 months later my son is almost totally better. He’s lost a lot of his extra weight. He has a reverse T3 issue right now that we’re treating, but otherwise he’s almost back to his old self.

    He was bedridden and missed a year and a half of school because 7 doctors didn’t think boys could get hypothyroidism. Thank God we found someone who would listen.

    Reply
    • Cindy Kennedy

      It can be such a struggle – especially as they all present with such different symptoms. Even my 2 girls have completely different experiences with it. It’s so wonderful that you kept pushing. I think as a Mum, you know when something isn’t right and you just have to keep fighting for your child until you get to the bottom of it.

      Reply
      • Stephanie

        My son’s teachers saw the change in him too when he got sick – but the doctors didn’t believe me.

        Reply
  23. Amanda Freidline

    Thank for sharing this info!

    I wish that pediatricians understood this disease more. It’s been extremely hard to find a doctor in our area that will take on a peds case and we have yet to find one that will treat her with any kind of medication, although her numbers are all super high and she presents every symptom along with diagnosed goiter and hashi’s and her vitiligo is spreading like wildfire – that’s a real red flag for me that her body is under attack.

    I also wish I could find appropriate optimal lab ranges for children – this has been a real struggle.

    Reply
    • Cindy Kennedy

      Yes, we’ve had a lot of trouble too. We have to travel up to Brisbane to see paediatric specialists, which is an 800km round trip. With regards to optimal lab values for kids, I do have a table of them for all the different age groups and both sexes in my book. 😉 unfortunately, I don’t think most doctors realise that their thyroid hormone needs change with their age.

      Reply
    • diane van

      My sister just told me about a diet called “FOD MAP” – avoid all short-chain carbs.. PLEASE LOOK UP THIS DIET. Anyone with any autoimmune disease should try this diet. Doctors in Australia did a study and realized that people who have autoimmune symptoms need to give up certain foods, so you can clean your gut.. Then slowly add the foods back to your diet.. PLEASE look this diet up..Gastroenterologists do NOT want you to feel better – DO YOUR HOMEWORK and research this yourself..

      Reply
      • Cindy Kennedy

        Yes, the FODMAP can be very effective for a lot of people as autoimmune diseases manifest from the gut itself. It’s also very important to also do a gut healing protocol at the same time to repair the intestinal lining. I do strongly recommend though that people work with a qualified practitioner when undertaking an elimination diet, especially for children as it is vital to make sure you are still getting enough of the essential nutrients. FODMAPS can do wonders though! 🙂

        Reply
  24. KimSquish

    My 5 year old daughter has Hashis and it has been quite the battle over the last 5 months. I have Hashimotos myself, so when I saw my daughter constantly exhausted, constipated, just not her fled, I had a sneaking suspicion it was her thyroid. Luckily, her pediatrician listened and the lab work began. My little girl had a TSH of 9.89 and antibodies so high that the test couldn’t read the total number, all we know is that it is well above 900. She went from hypo to hyper because of synthroid, which was a scary experience. We have a team of Drs consisting of a pediatrician, endocrinologist, cardiolologist, gastroenterologist and her pediatric Wholistic Functional Med Dr who is 3 hours away from us but well worth the drive. She is exhausted, constantly complaining of aches and pains, is still constipated and SO sick of being poked and prodded. Yet, she is the kindest, silliest little girl I know. No matter how her day has been, she is always ready for her dance classes in the evening. Even when she was in the hospital with a crazy fast heart beat (from being hypo) she still was begging to go to dance. At one point I tried to cut her ballet class time thinking that she would need to conserve her energy, but the stress of not being in her happy-place made me reconsider. We homeschool, so we make sure she has several hours of down time mid-day. She takes an adult handful of supplements daily plus her cod liver oil and magnesium citrate to regulate her bowels. We are gluten free, very limited dairy, no colors, no msg, no egg (allergy) lots of fresh veggies and fruit, lots of bone broth, lots of love and prayers. Thank you for bringing this unknown childhood ailment into the forefront.

    Reply
    • Janie Bowthorpe

      We are so glad you told us about your dear daughter. She sounds like a sweetheart. 🙂 Hopefully you can find the right way to get her antibodies down. Many adults have! https://stopthethyroidmadness.com/hashimotos

      Reply
    • Cindy Kennedy

      Hi Kim. Your daughter is so fortunate to have such an astute and caring Mum as yourself! That is wonderful that you were able to pick it up and insist on her getting tested. I honestly believe in children (and men) that getting them diagnosed in the first place is one of the most difficult battles because of the stigma that it is a ‘women’s disease’. I am a 40 year old female that has been through puberty and 2 pregnancies and so fit the demographic for the disease, and yet it is my husband and 2 young children that have it. Well done on taking such good care of her!

      Reply
  25. Cindy Kennedy

    Thank you so much to Janie and STTM for hosting this post. It is vital that we as parents of hypothyroid kids get word out about our kids and their challenges. This disease is so poorly understood and managed in the allopathic system for everyone who is diagnosed, but unfortunately, so many children are not even tested because it is considered an “adult” disease and so they go undiagnosed and untreated. I’d love to hear about other readers and their journeys. What have been your biggest challenges? What special moments have you had to light up your day? What can we do as united force of parents to improve our children’s lives?

    Reply

Leave a Reply