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11 year old daughter just been diagnosed with hypothyroidism

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jessica_42438
jessica_42438

Hi my daughter has just been diagnosed with this, doctor thinks she’s had for a good year or two. We had no idea until her hair started to fall out. She was put on levothyroxine 37.5mcg then 75mcg now 100mcg. 

She’s not sleeping at night, very emotional, behaviour at school isn’t great and she’s just generally not herself. I’m wondering if anyone has any advice for me or has a child with the same thing! There doesn’t seem to be any information out there for children that have this and it’s so uncommon! Thanks 

0 likes, 13 replies

13 Replies

  • dave64969
    dave64969 jessica_42438

    Posted

    You need to have her tested for antibodies caused by a version of hypothyroidism called Hashimoto’s Thyroiditis. This is common and it is caused by the immune system attacking the thyroid. If she has Hashimoto’s there is much that can be done in addition to medication. One of the often recommended measures is going gluten-free. Others here may have more recommendations as well. In one so young it is unlikely that her thyroid is completely non-functioning and so steps to recover it are worthwhile.
  • MtViewCatherine
    MtViewCatherine jessica_42438

    Posted

    I’ve tried a bunch of different meds. There is no bioidentical thyroid medication.  There are many brands of levothyroxin. I tried several over a two year period and would strongly advise you to read the side effects of this medication. The side effects are very real.

    The best diet is gluten free (very strict) Paleo diet. Vegan diet I’d not advisable. No fun for a kid, I know, but being sick is less fun.

    Magnesium deficiency can mimick thyroid disease. It’s advisable for thyroid patients to take good quality multivitamin and multimineral supplements. Coblimated B vitamins should be included in your multivitamin. I’ve gotten relief by taking essential amino acid supplements. 

    The best medication for thyroid disease is ThyroGold. It is an organic over the counter supplement made from bovine (cow) thyroid gland. It is the closest you’ll get to human thyroid and has the least side effects. The drawback is that you have to figure out the dosing yourself. 

    Hope that helps. You have a lot to learn. Good luck yo you both!

  • dave64969
    dave64969 jessica_42438

    Posted

    Can you post her last blood test results? Most people do just fine on thyroid meds once they find the right dose, which can take a while. Having her see an endocrinologist may be a good idea as well. Many family doctors don’t have much of a clue about hypothyroidism.
    • jessica_42438
      jessica_42438 dave64969

      Posted

      Thank you for the advise, I didn’t note her blood test results down, but the doctor said it is very underactive, she was referred to a paediatric Doctor and since then her dose of levothyroxide has been increased, she had an ultrasound on her thyroid on Monday which confirmed it is thyroiditis. She is 11 years old but is very short, she almost looks like a 7-8 year old, her feet are tiny and has gained weight over the past couple of years. Not realising these are all the symptoms of an underactive thyroid. She’s been on levo for around 6 weeks now and her behaviour and emotions seem to be getting worse and especially the no sleeping. She doesn’t have her next blood test until the 25th of this month to check whether the dose she is on is correct. 
    • MtViewCatherine
      MtViewCatherine jessica_42438

      Posted

      Jessica, I was a mess on the levothyroxin. It caused so much anxiety, I really wasn’t able to function.

      A pediatric endocrinologist would be your best bet if you can find one. I’m in the US, and I’ve found the doctors from Romania and Russia to be most knowledgeable regarding thyroid issues. They have a lot more training in this particular area of medicine. You’ll also need to see a nutritionist and a dietician who specialize in thyroid issues, or do the research yourself.

      So here’s how the medication stuff works with thyroid. It’s sort of a shock to the body because the whole endocrine system has to adjust whenever you change the medication- either the type, brand or dose- so docs increase slowly. It takes a full three months for the medication to properly level out, so you often overshoot the dosage a tad and then taper back. 

      Your biggest challenge is that it can take up to two years to get the dosage right on thyroid medication. You don’t really know if it’s working until you get the dose right. With a child, you don’t have time to mess around, because kids are developing constantly and they need to be able to grow properly. You may want to call around to specialized children’s hospitals, or reach out to any sort of public health database system that can help you find a doctor who specializes in this sort of childhood disease. If you’re in the US, there are donation driven hospitals that work only with children. St. Jude is one of them. They might be able to direct you. 

      Also, if you’re able to, acupuncture and essential amino acids are your best bets for getting immediate relief while you’re figuring out the medication. I’d go old school on the acupuncture- someone from China or Korea. Start with an acupuncture school clinic if you don’t know a good acupuncturist. Acupuncture schools have wonderful teachers in their (inexpensive) acupuncture clinics. These extremely knowledgeable teachers are also a source that can direct you to an acupuncturist that’s a good match. Though you’ll probably need to go for treatment in the clinic a few times so they have a chance to see the condition. I know acupuncture is a hard sell for a kid, but it’s been a lifesaver for me while on the thyroid roller coaster. 

      Sending angels to help you find the help you need for your daughter.

  • cathy35794
    cathy35794 jessica_42438

    Posted

    Your daughter's problem started with faulty testing, an inept physician, and the drug that is poisoning her. My response will I hope be followed by a woman who has the background to  explain to you why. I am just another victim of a wholly broken healthcare system.

    • MtViewCatherine
      MtViewCatherine cathy35794

      Posted

      What Cathy refers to is the levothyroxin is not bioidentical and can cause it worsen autoimmune disease. If you read the posts on this site regarding levothyroxin, you see that there are literally thousands of posts from people having horrible side effects from this medication.

      Unfortunately, doctors are not educated in the full range of available thyroid treatment options. So many thyroid patients venture out on their own, simply because, once on these meds it’s so bad, it can’t possibly be worse. Hence my suggestion of the ThyroGold, and to carefully read the side effects of all prescription medications. Once you read the side effects of the levothyroxin, your eyes will be open, as these are not mythical side effects.

       Thyrogold can be ordered easily online. They have an extensive page on dosing. It’s very scary, until you realize 1) the docs follow a standard protocol of one size fits all, and 2) the natural OTCs have far fewer side effects, 3) the medical dosing isn’t perfect and there will be mistakes and adjustments with any doctor’s dosing. All in all, far less risky to do it yourself using a product that’s safer.

      Do your research and don’t be manipulated by the “mom guilt”. If you feel uncomfortable about a treatment protocol, get another opinion, research it. You can say no if your gut is screaming at you that it isn’t right. A mom’s gut is never wrong when it comes to her kids. Stay away from “experimental” treatments that offer miracles, they generally are very high risk.

      You have a wealth of information at your fingertips and extremely strong motivation to find successful solutions- you can do it.

      Thyroid disease is generally autoimmune, triggered most commonly by exposure to chemicals and radiation, but also by infection. The autoimmune aspect is reason enough to go to an all organic, home cooked diet/ nothing prepared, nothing processed, no sugar, no soy. Adults do better without dairy, but your daughter may need the dairy in her diet. If so, hard cheeses and yogurt are the best choices.

      She also probably has other issues related to thyroid disease. Mainly gut issues. Since her appearance is as if she is malnourished, she probably has gut problems that cause malabsorption if nutrients. This is very typical on thyroid patients. The gut problems lead to vicious cycles of illness. In fact there are books on diet specifically for gut problems in children. Resist the temptation to use prepared “nutritional drink” supplements. Make your own using organic whey protein powder, bananas and almond milk. Don’t use coconut water or milk too much because they work like a laxative.

      In your daughter’s case, her lack of growth should have been noted previously if as you say, she’s 11 and appears to be 7 or 8 in size .

      My heart goes out to you.

    • cathy35794
      cathy35794 MtViewCatherine

      Posted

      Thank you for doing such a great job of explaining. That is why I need to leave the educating to you and sty off this page! Having worked with young people for many years it angers me when I see their lives being derailed by a mindless money machine
  • dave64969
    dave64969 jessica_42438

    Posted

    Jessica, a bit of context for you: medical science does not have a thorough understanding of the endocrine system, of which the thyroid is a part. It consists of glands sending chemical signals to each other and it’s complex. Doctors have told me this and I believe it. So one person’s experiences may or may not apply in your daughters case. 

    Cathy and Catherine’s posts are to be read in that context insofar as they contain unsupported statements about thyroid medication. I am one of many who have done just fine on Levothyroxine for years and I know of no sound evidence that it is harmful to “thousands of people”. I tried ThyroGold for a while and it made no difference.

    And as for ranting about incompetent doctors and a broken healthcare system, I don’t think that helps you. 

    Get you daughter’s results from your doctor - she has to provide them - and post them here. Then you can hope for fact-based advice.

    you mentioned that she is confirmed with “thyroiditis”. If you meant Hashimoto’s, the immune-system-triggered version, then the advice about diet and such makes sense.

  • Flosscandi
    Flosscandi jessica_42438

    Posted

    Hi

    I don't have any children but from my own personal experience - I felt awful when I started levo, it took me a year to get my dose right. It took me about 5 months to start feeling better. I felt worse when I started the meds, worse than I felt before I started! The docs said this was my body adjusting. I experienced very low mood, crying, breathlessness, heart palpitations, dizznesses, no energy. Now days I feel so much better, but have days of no energy, low mood and tend to get new symptoms once the old ones have gone! It is different for everyone, and so unpredictable. I think the best think you can do is listen. It is so hard to explain how we feel and the best medicine is people around us who don't judge us and beileve we are ill. It must be so hard for a child to go through this, best of luck to you both.

  • MtViewCatherine
    MtViewCatherine jessica_42438

    Posted

    Hi Jessica, one more thing a ran across recently is the high incidence of pancreatitis amoung thyroid patients. There seems to be a link between pancreatitis, thyroid disease and a particular genetic variation of the gallbladder duct. In these people, the pancreatic enzymes get blocked by the bile duct. Without the digestive enzymes, food doesn’t digest properly, leading to malnutrition and a myriad of gut problems. This would go a lot towards explaining why your daughter isn’t growing. And it might be worthwhile to do a search on pancreatitis in children. It seems a major symptom of chronic pancreatitis in children is abdominal pain.

    You’ll need to check the list of pancreatic symptoms and if you feel this is a possibility, you’ll need to find the safest way to test. My preference for image testing is ultrasound because it’s easy and no radiation involved.

    Be sure to keep a file for the research you do.  Print things out so you can easily refer to them. Things that seem irrelevant initially, may be helpful later on.

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