HELP - 13yr old on Levothyroxine very ill.

[Sazza1979]

Hi, I'd really appreciate some help for my poor son...

I live in the UK, and my son, who is 13 years old, was diagnosed with Hypothyroidism in July (Free T4 was 10.2 and TSH was 16.2mIU/L!). He was started on 25mcg Levothyroxine, and we were told to jump the dose up to 50mcg 2 weeks after that. Then he would have a blood test to check his thyroid function at around 1 month after starting Levo (2 weeks after the higher dose) to check whether or not to increase it again.

The TSH was 2.8mIU/L (I think) and I was told it was well within the normal range, and so was his Free T4 (I can't remember the number but it was also well within the middle of the normal range). At first while he was starting the medicine and upping the dose he had no effects, either positive or negative. Then I noticed he was more energetic, and his chronic (5 years) constipation started to improve - not cured but much better.

However, a few weeks later, he started to complain of feeling sick each morning, and having trouble sleeping (this would have been after about 6 weeks on Levo - 4 weeks on higher dose), after about 2 more weeks he woke me up in the middle of the night saying he had been vomiting and had diarrhea all night. Since then he has felt severely nauseated, and is occasionally vomiting, with several attacks of diarrhea every day, terrible insomnia, and night sweats. His mood has plummeted (although whether this is a symptom in itself or caused by the other symptoms I'm not sure), he has been getting some headaches, and his energy is very low. He can't go to school as he is too sick and has been off for 3 weeks now.

In total he has been very unwell for more than a month, and so his GP did another Thyroid Function Test, which showed his TSH is 1.79mIU/L and his Free T4 is 14.28pmol/L (both within normal ranges). This would at least say that the dose isn't so high that he is now Hyperthyroid, but I am very concerned that the medicine is responsible as although his blood tests say his Thyroid is behaving normally, his symptoms suggest hyperactivity.

He is to see his peadiatrician on Monday, and I don't know what i should be asking. I am really concerned as the poor boy hasn't been out of the house for nearly 3 weeks except to go to the doctors and only then in a cab because he is CONSTANTLY feeling like he's about to be sick.

Any ideas?

Sarah

[Sazza1979]

I think here the Free T4 is between 12 - 22 but varies depending on which lab is being used TBH. I will ask the pead about different brands and testing for T3, as well as perhaps considering going back down to a lower dose and very slowly increasing the dose. The doctor will most likely not want to try ALL those ideas but if we try one at a time and see what happens hopefully it'll help... As for your questions, I don't know about his heart rate, but his mood is low, and is something I intend to also highlight with doctors. What I will point out to them is that the TSH has been getting lower each time he was tested, and although he's still within the normal range, this suggests to me that the medicine is having a continued, accumulative effect. Therefore, even if the dose isn't causing Hyperthyroidism now, it may be too high as the TSH isn't stable, and if it continues to drop he will become Hyperthyroid, and that his symptoms may be "pre" warning signs. I don't know if they'll listen, but I'm gonna try my hardest. Wish us luck!

Hava, thanks for the pranayam, we will try this. Anything that may help. I have been using a similar abdominal breathing exercise with him already, so I'm open to this one too. Thanks.

[hava]

Let your son do this pranayam to ease the symptoms.You can do it as well, so you can see how it feels.Start with 2 or 3 minutes and increase to 10 minutes gradually.Any feedback you have will help others.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Kapalbhati pranayam -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 20 to 30 minutes twice a day. Children under 15 years – do 5 to 10 minutes twice a day.
Not for pregnant women. Seriously ill people do it gently.

[magpieannie]

Hi!  Do you have the reference ranges for the free t4 test that you can post? I would also try to get the free t3 test taken since he has so many symptoms and this level is what corrolates best with symptoms. The t3 level is the active hormone that t4 must convert to within the body. My 10 year old daughter has no thyroid gland and she has a hard time converting the t4 medication into enough t3 so this has to be tracked and supplimented for her also. Maybe your son is alergic to one of the inactive ingredients in the levo.? Sometimes a change in brands makes a difference. Tirosent is the new t4 med on the market that has no fillers or binders. Google it and read up on it as this could be worth a try. Also, have your sons vitamin D level checked as this can cause issues for hypothyroid persons. Maybe the jump from 25mcg to 50 within 2 weeks was too much too soon? Backing back down some should be discussed with your doctor. His symptoms like diarrea and night sweats and difficulty with sleep can be common with too much thyroid hormone. There are some people who feel better with a slightly higher TSH within the reference range, but that is not usually the norm. Is he having any other symptoms like increased hunger or heart rate? How is his mood? These are all things to watch for in reguards to the appropriate amount of thyroid hormone in his system. Get back with on this please.