I'm new here so be gentle and bare with me please!
I really need your advice and reassurance!
The past 3 bloods my daughter has had, her TSH levels have been really high, so much so her peads secretary called me after the first results in a panic telling me her levels indicate that she's not been taking her tablets and if we didn't sort it soon she'd end up in a coma! Of course that's me now worrying night and day!
She had her usual check up with her doctor and he wasn't worried at all , just advised that she starts having 125mg on a daily basis.
Three weeks on and today I received a letter from her doctor saying her levels are still high so drop 2 days down to 100mg and keep the rest at 125mg.
I'm so confused and worried about her. Is she going to be OK?? What are the signs that she's deteriorating and what are the time scales for this? I don't fully understand how the dosage works if someone could enlighten me please?
She has CH so not sure if her forgetfulness is down to becoming a teen or is it just herself etc
Any advice is greatly appreciated! !
Vanessa xx
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Vanessa09
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You really need to get copies of her results, including the reference ranges. What your doctor is saying and doing is inconsistent.
When he/she talks about levels being high is s/he talking about TSH or Free T4 or both?
If TSH is high then levo needs to be increased.
If Free T4 is high then it suggests levo might need to be decreased.
But if both TSH and Free T4 are high it suggests your daughter is not taking her levo regularly and is taking several doses all at once just before a blood test.
If your daughter's memory is poor it could be due to not taking her meds regularly enough or her dose is too low. It could also be caused by low nutrients, particularly vitamin B12. Low nutrients are common in people who are hypothyroid.
Ask your daughter's doctor if s/he will test your daughter's ferritin, vitamin B12, vitamin D and folate.
Make it a habit from now on to get copies of all your daughter's blood test results including reference ranges and keep them in a folder. Make several copies of them in case you need to show doctors something in future - please don't give away your only copy.
I will mention that I spent a year trying to lower my TSH while in Levo alone, the more I took the more it sent my FT4 over range, and I am very diligent about taking my meds!
So you're not entirely correct that high FT4 high TSH = she's not taking her meds. We're all different and we don't all do fantastically on Levo alone, in my case I need T3 to bring down my TSH as Levo doesn't work!
So let's not rule out the possibility that she needs a different treatment 😉
There are other complications that can cause high Free T4 and high TSH besides not taking meds regularly. People can have something called a TSHoma, which is a tumour on the pituitary which produces TSH irrespective of the levels of Free T4 and Free T3.
If you take your meds religiously but you still have high Free T4 and high TSH, then you should ask to be referred to an endocrinologist for further investigations.
Although I'm not sure what would cause it, I think the hypothalamus could probably go wrong as well. It is the hypothalamus that releases the hormone that the pituitary responds to. So if the hypothalamus produced too much Thyrotropin Releasing Hormone then that could end up causing you to have high Free TSH levels as well.
I'm seeing an Endo currently, I have another appointment in 2 weeks to see if the bigger dose of T3 is helping. I actually had a TSH of under 1 but like I said my FT4 went over range. I think I don't convert well
I am sorry your daughter has hypothyroidism at such a young age.
From now on always get a print-out of the results with the ranges. Labs differ so ranges are important. Keep them for your own records and post if you have a query.
If you get a copy tomorrow, put them on a new post for comments.
Blood tests should be the very earliest, fasting, and allow a gap of 24 hours between the last dose and the blood test and take afterwards. This keeps the TSH at its highest as it reduces during the day and may prevent unnecessary adjustments.
Levothyroxine should be taken either early a.m. with one full glass of water and wait about an hour before eating. or bedtime (new research has shown is more beneficial). If you decided on bedtime, she should last have eaten about 3 hours before, because if we have hypothyroidism everything slows down, even digestion until we get to an optimal dose which raises it. Food can interfere with the uptake of levo.
If you decide on a bedtime dose, miss this on the eve of a test and she can take it next morning and bedtime dose as usual that night.
Also ask for B12, Vit D, iron, ferritin and folate as we are usually deficient.
Vanessa09 ( Ichanged 'doctor' for daughter ) mind you it would do know harm if some doctors were hypo.
Thankyou for your replies. Im almost certain she's taking her meds regularly, this is one thing we've really drummed into her, the importance of taking them.
I've requested the secretary call me tomorrow so I'll ask for copies of her results.
Do you think she will be OK? This might sound OTT but ever since I got that call after her first lot of high results I've been worried sick she won't even wake up!! I must check on her about 15 times a night
No need to worry at all. Our thyroid gland gradually reduces the hormones until we are finally diagnosed, so it is just working up the doses gradually until she has no symptoms left.
Thyroid hormones drive our metabolism - the doctor has no right to frighten the life out of you.
Your daughter is still a child and they are unaware how important their hormones are, particularly thyroid ones when they have hypo. You don't need to check on her so often but you probably cannot sleep yourself due to pronouncement the nurse made. A bedtime dose might put your mind and hers at rest as there's usually a rush in the morning.
When nurse gives you results always make sure she gives you the ranges.
It's hard to say as we don't know your daughter or her condition, but myxoedema coma, which you're talking about, is quite a rare and intense end result of not taking Levo for a looooong time. Then again this is information regarding adults so I really don't know about your daughter!
Is she falling asleep constantly? I have a trouble getting my TSH down too, it's been over range for a year even tho I take my meds every day, increase of meds sends my FT4 over range so I've had to start T3 treatment to try to get my TSH down that way, if something happens and my T3 meds don't work let me tell you I'm falling asleep uncontrollably by 2-3pm, does your daughter experience this?
With a TSH that high your daughter's results suggest she is massively under-medicated. But as I said earlier if she is only taking meds occasionally and then trying to catch up just before a test it shows up with high TSH and high Free T4. So until you have copies of her results it isn't really possible to say what needs to be done.
TSH is high at 114, mine was 100 when diagnosed. So I'm sure as her dose is gradually increased she will begin to feel much better. As Helvella states below, before any danger happens it takes years.
Maybe a night dose will suit her better rather than a.m. as sometimes we're in a rush in the morning.
Dose increases have to be done very gradually. Sometimes we can have unpleasant symptoms but we do settle down.
It is so important she gets into a solid routine now. Buy her the weekly pill dispensers from any chemist, they come in pretty colours. Create a routine where she takes her meds at a set time at a set place in the house. Explain the importance of her physical health as well as her mental that will improve if she religiously takes her meds. Maybe a watch with an alarm might help. The scary phonecall has sent your stress levels sky high, you have my full sympathy. Read as much as you can on all things hypo. Knowledge is key. My very best wishes to you and your daughter.
An interesting and comprehensive article for you Vanessa09.
Before there was effective treatment for hypothyroidism, it was often thought to take twelve years for an adult to finally fall into a coma. Obviously, like everything else, highly variable, but you are not talking about overnight, or over a week. Especially if she is taking the levothyroxine as prescribed.
For the longer term, you might find it a good idea to stick to one make of levothyroxine.
Some people find it makes a difference. Even if the difference is slight, it is something you can eliminate by keeping to the one make. Many pharmacies are quite helpful and will make a note that you want one make consistently.
I absolutely endorse getting her results (including reference ranges). I'd also encourage you to put some effort into ensuring that these results are available forever. Maybe write them up in a nice hardback notebook AND store them online. You never know how useful they migh be in future.
Thankyou everyone! You've all been so helpful! (a lot more helpful than the doctors!) I actually stumbled across this forum and I'm wow am I glad I did. In the 12 years of knowing about this condition I've still only ever met 1 other person with CH so this is comforting to be able to speak to people in depth about it.
May I ask how people know so much about it? Are you trained, born with it or like myself, have a child with it? Etc
I knew it was a serious condition but just thought because she was under the watchful eye of a medical team and it was controlled, she'd be fine! Clearly I was wrong!
Do hormones make much effect?
If her levels are this high and shes taking her meds routinely, could there actually be an under lying issue or are levels being high purely down to being under medicated?
I'm sorry for all the questions and I hope you don't mind me asking them!!
She should also be taking her medication on an empty stomach with a full glass of water. This makes sure it gets to the right place to be absorbed quickly. Nothing else to eat of drink until an hour later. You may like to read the information on the Thyroid Uk site as it hhas other does and don'ts. Above all don't worry! There are a few rules it's best to stick to but always post your daughters bloods and ranges and we shall talk you through it. It might help if you don't eat until she can so she is t tempted to cheat! After any dose increase wait 6 weeks to retest to see if it needs increasing again
Hi all, so the secretary got back to me. Her TSH is 77 with a reference range of 0.4-5.5 and her free T4 is in range,16.4 with a reference range of 11.5-22.7.
She said she thinks the doctor had looked at the wrong notice (unbelievable) so she's asked for an urgent review on it as the dosage clearly needs to go up not down.
Totally forgot to ask about receiving the results so I'll ask that next week when she calls me back.
Yes, her dose needs to go up! I find it frightening that a GP could get that so wrong. Regarding your daughter taking her medication, as she is only 12 I personally think she is too young to be responsible for it. To ensure she is taking it regularly could you take it to her with a glass of water at the correct time? As others have said, it is very important that she takes it on an empty stomach ( one hour before or two hours after eating). Regarding the bed wetting you mention in your second post, up to 7 is considered to be normal. Wetting at 12 could be a sign that she is distressed, most likely by feeling so ill from such a high TSH. As you treat her with levo and, over time, the TSH comes down, she will most probably stop the wetting.
If it was my child I would go straight back to 125 mg a day, and get a dose increase as soon as possible.
She was diagnosed with hypothyroidism at 3 weeks old so has never known any different.
Her levels have been within range in the past, it's just recently they've been all over the place and throughout this time she's only ever had 1 dry night (and I think that was only because it was a late night)
It's possible she may be going through bodily changes anyway and because of this along with her high tsh genuinely forgetting to take her meds at set times because she feels so naff. That along with school and homework and all that can bog a kid down. Or she may be taking them too close to food and she isn't absorbing properly. I would maybe take them from her for a while and give it her at at set time, say in the mornings or evenings away from food. I know that she is used to it but it may be that she has just slipped because she feels so unwell and spiralled a bit as it's easily done. You are bound to be concerned and I would be also. I have a 12 year old and she would forget, she forgets everything but it can be worse when you are so poorly. I still sometimes forget mine now occasionally as an adult and don't mean to at all. When you are that ill you can't remember if you have taken them or not. Hope you get it sorted x
This is just it, I can't be sure if some of her symptoms are simply down to her being a child or is it just her or (and the more likely answer) is it that she's under medicated!
I didn't realise not having that tiny little gland would effect the body so much! I knew it did a lot but you guys have opened my eyes!!
It affects everything even down to really low moods during periods its all hormonal and interlinked and this will be a tricky time for her, more so than other girls without a thyroid disorder. That along with concentration going all over the place. I would get her into a routine in front of you taking it regularly and then if her tsh remains high and doesn't come down soon then get it increased asap. Make sure her ft4, tsh and ft3 all get tested also and post on here the results of you need clarification. She will be ready to go back to taking responsibility herself at some point and when she feels better remind her of how poorly she became. Its worrying I know and it's that time where they have to be given more responsibility with things but some kids just need a bit more help with remembering than others. She has a very good reason though as her tsh is so high. She will feel absolutely awful. My daughter seriously forgets everything she's like me. Good luck I hope she feels better soon. x
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) mind you it would do know harm if some doctors were hypo.
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