Type1 child with hyperthyroid

Hey I have 8 year old with type1(7yrs) she has recently been diagnosed hyperthyroid. They want to start her on medication called Methimazole I hear most children start this medication and don’t go in remission. So I’m curious are their any other parents going through this. I’m very curious are there other options or just medicine? What are the outcomes of using the medics? Please any responses or helpful hints?

@nicky81 Hi.

Thyroid disorders are more common for people with type 1 diabetes. My experience is in hypothyroid, as I stopped making thyroid a long time ago and now I have to take a pill to replace it. synthetic thyroid doesn’t have any side effects in me.

you should discuss how dangerous any drug is with your doctor, and then if the explanations are not satisfactory, a second opinion from another doctor. Thyroid is necessary and associated with growth and metabolism, but that’s all I really know.

low thyroid needs to be replaced and very high thyroid would probably need to be controlled, there are not many options in my opinion.

My 14 year old son has Down syndrome, hyperthyroidism at 11, took methimazole. Off the medication over 6 months, hopefully will stay in remission. Before he went off the medication he was becoming hypothyroid. We took him off the pill gradually over a period of weeks. There’s always the concern that he will go hyper again. I would stress the need for food that supports the immune system.

Hey Sonia it’s refreshing to hear ur son went in remission I’m so hoping this is what happens with my daughter. Is there a particular diet y’all follow or what are some food ? I’ve looked at different ones online but I’m just never sure if I’m making the right decision we’ve tried a lot of natural things and none had worked and that’s when I gave in and started the methamazole.

Hi Nicky,
Foods for anti-inflammatory for thyroid

omega-3 fatty acid’s


beta carotene

Apples for quercetin


Sweet potatoes vitamin C


Flaxseed ground

Parsley inhibits histamine

vitamin C and E

Foods that contain high levels of histamines:

wine beer champagne

fermented foods

dried fruit

citrus fruits


cured meats

aged cheese


smoked fish

nightshade (some debate)vegetable



cows milk -he has allergy to dairy







wheat germ artificial preservatives

Low histamine foods include

fresh meat or poultry

fresh fish


gluten-free grains

dairy substitutes

pure peanut butter

fresh herbs








cooking oils

Vitamin D

I used the wholesome food app. For sources of food for all vitamins. Saved the favorites to the app. It lets you know what you are short on and what foods have it. I can’t say the diet alone turned things around but it definitely doesn’t hurt. Hope this helps. His blood sugar is still challenging. His blood sugar can drop very fast as he comes down. His food is blended because he is texture sensitive so it processes much quicker. How long has your daughter been hyperthyroid?

It started late summer 2017. Her thyroid antibodies were testing positive for hyper/hypo but more toward hyper. So we had started trying natural things…essential oils, we took away gluten and dairy and after a year of no changes we decided to try the medicine last blood work she was hypo. I really didn’t want to put her on medicine because I also I took it and eventually had to have thyroid removed. Her only being 9 I worry what will happen in long run and I’ve been told that the methimazole shouldn’t be taken longer than 2 years but her doctor says that’s not true. Thank you for the feed back.

My son took it over slightly over 2 years. We resisted his endocrinologist pressing to do radioactive iodine. Each time we adjusted the dose up when he would go hypo it was starting to affect his Liver. In the end he stayed more hypo and his immune response had dropped to lower levels. His thyroid levels were in normal range so we slowly tapered his dose. 1-1/2-1/2 every other day. His endocrinologist had said to just stop but I read that tapering down slowly helps to prevent the body swinging back the other way. He needs to be retested, he is heating up more when his blood sugar is dropping. How fast does her blood sugar drop?

So her THS is normal they keep saying it’s her antibodies? She takes 1/2 pill every day. Her sugars stay pretty good under 200 but her A1C is 9.3 which we thought was coming from thyroid but obviously not. I have talked with her endocrinologist about a holistic doctor to treat the thyroid but they don’t think that’s good idea but I don’t want her to be immune to medication and constantly need it I would like a more permanent natural fix.

I’m with you! I’ve asked about a nutritional holistic approach to his endocrinologist, she refers me to a nutritionist who refers me back to the endocrinologist! Too much specialist Not enough holistic approach. It never made sense to me to destroy an organ that works but is being stimulated by an over active immune response. There’s an imbalance that starts elsewhere in the body. Frustrating.

My son is texture sensitive so his food is blended, absorbed quicker, drops faster. He can drop 100 in 15 minutes so I’m constantly testing. I’ve blended his vegetables with nuts, coconut oil to try and slow it down. I think as he hit puberty it has become more challenging.

Wow that is really quick. I would be a nervous wreck. Does he wear insulin pump?

No, unfortunately. We have tried but he pulled it off. He doesn’t keep bandaids on either. I am acting as his cgm. What I see is that as he is coming down it accelerates so I have to give snacks to slow it down.

That is interesting that he comes down so quickly. Is there any certain foods/drinks that help keep his sugars up and steady?

He doesn’t eat solid food. Everything is blended, so frequent monitoring. If he’s dropping, applesauce every 15 until he levels out. It’s been extremely challenging since he became hyperthyroid. Blended food is absorbed quicker so figuring out carb ratio is a bit tricky. Unlike most people who consume solid food that release carbs over a longer period of time his food is absorbed much quicker. Having a metabolism that is in high gear doesn’t help. Exhausting

I have a now 20 year old daughter she is not a T1D like my 2 year old but she was born without the thyroid gland and has been on synthetic thyroid pills her whole life with no side effects. I wish your little one the best but know are little T1D warriors are stronger than most and will be ok.

Thank you Missy it’s nice to hear someone with experience tell me itsok if she does have take thyroid medication because if the medicine she’s on now doesn’t work then another option is to remove the thyroid. We have discussed not wanting the iodine to kill it off we would feel better removing it and doing synthyroid but in back of my mind I just wondered what the affects of long term use would be for a young girl so thank you!

So I just had an appointment with his endocrinologist. I was burning through test strips because he can drop so fast, he’s nonverbal so relying on how he is behaving, quiet, droopy face, sitting a lot, eyes getting red ( signs of hyperthyroidism) without testing it’s stressful. So because I have been testing so frequently I always have to have them call the doctor to approve. Now instead of checking so frequently they want to limit to 4 times per day. Even in his school plan for regular kids who are not hyperthyroid the orders cover more testing. Before breakfast lunch and dinner, before exercise after exercise, if signs of low, during the night, 2 to 3 hours after the meal, so how does that add up to four? If he could drop 100 points in 15 minutes how am I supposed to catch his lows? If he’s at 160, in 15 minutes that means he’s at 60. My husband is siding with them because of fingersticks. On the way to the appointment he’s leaning against the car door, I tested him he was at 160. My husband said he’s OK he’s at 160, but he’s dropping at 3.5/min. Thank goodness he still reacts to his drops. We got into the office and he layed down and fell asleep! I asked if someone could test him, not normal behavior. They were so busy telling me what I was doing wrong. At least the nurse actually looked at how soon he was coming down and changed his carb ratio. The solution, don’t test but 4 times a day cover all carbs, …even if he’s dropping? Are we trying to bottom him out? I’m stressed and confused as to the lack of logic! Feeling over whelmed with no support.

Did you test him at this point or not?

I don’t have these challenges but I test between 5 and 9x per day with an average of just under 6.

How long has he been type 1?

You’ve said he won’t tolerate a pump or a CGM so this leaves you with your negotiating skills with the doctor (who can and should authorize at least 6 or 7checks per day) and getting yourself your own supplies. If the budget is restricted, a Walmart ReliOn meter and extra strips are the most reasonable, IMO.

No they did not test him. They had his meter during the meeting and I kept asking someone to. He eventually woke up. I was so upset I couldn’t stop crying, so unfortunately my ability to negotiate was impaired. My husband took over and told the endocrinologist our son doesn’t go low and doesn’t rebound. They would not look at the details, said I was testing too often and that I needed a break from trying to act like a pancreas. Gave the responsibility of caring for his blood sugar to my husband. His blood sugar has been down in the first hour to 1 1/2 with food to maintain. If not, he drops, rebounds to a higher number…
After the endocrinologist left the nurse glanced at the app I use, which took less than a minute and determined he needs less insulin. Some how at the follow up appointment they increased everything. Again I showed morning numbers in range, lows. Has signs of lows. My son is nonverbal, Down syndrome, hyperthyroid…Looking for a new endocrinologist.