Two year old with high T4 and high TSH levels

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Hi, I have a very poorly two year old who hasn’t the energy to get through the day most days. After blood tests galore, it seems he has an overactive thyroid. However, doctors are baffled because his T4 is raised (as I believe it should be with an over active thyroid) but his TSH is also raised- which is usually low with over active thyroid? Doctors are baffled and calling for more bloods. I just feel like I need to be as educated as possible on this as it’s taken six months for this diagnosis and the thought of waiting even longer for answers terrifies me. He’s only two and a half and at such a crucial age of growing and brain development and his pot body just doesn’t have the energy for any of it. I’d be interested to know if anyone knows anything about thyroid storms as well. He keeps getting really poorly episodes where his heart rate is through the roof and his temp is 40. We kept getting told it was viral. It was happening every few weeks for a good few months. But I’m now wondering if it’s thyroid storms. Or would he not get better if it was that without the medication? I hope this all makes sense. And thank you in advance. I pray someone has some knowledge of this. Thank you. 

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  • Posted

    Hi BeckyJayne28, a high TSH level and elevated FT4 level might indicate secondary hyperthyroidism. 

    https://patient.info/doctor/hyperthyroidism#nav-6

    You could search more about this on the internet. It is a very rare disorder that could be caused e.g. by a pituitary adenoma that is secreting too much TSH. 

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    • Posted

      Thank you for your response. I've looked into what you've said. He had blood tests in March and they showed raised T4 and normal TSH, but then further blood tests last week showed that his T4 has gone even higher and his TSH is also raised now. They are making us wait 5 weeks for further blood tests and I just feel like I'm going out of my mind. I just want to be as clued up on it all as possible so I can be ready for his next appt. Thank you 

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  • Posted

    You need to get to see an ENDOCRINOLOGIST  AS SOON AS YOU CAN DO SO !!

    doctors don’t know too much about Thyroids ..  and a two year old is not to be hesitated with 

    Present your boy to accident and emergency 

    And tell them all you know about the diagnosis .. I have Graves’ disease but in remission .. I was very bad  and on the verge of thyroid storm ..  so I know the sadness that must give you to see your little boy suffer.

    If he was mine I’d kick up Hell  to make them listen to me

    And force them to act for him.

    If you have his last blood tests type them out here for us to read including the No’s. in brackets as they are the ranges .

     You are ENTITLED  to a printed copy of those results so insist !!!!

    Give him lots of cool drinks as he’s likely very hot too .. and let him lie back/ down  to rest as he needs to slow down somewhat .

    Come back on here and keep us posted as to how he is ... it’s the weekend so it might be a bit slow with responses but if you have to repost  ......give a good heading so that it is noticeable and help will come !

    Love to your son ...

    Mx🌹

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    • Posted

      Thank you so much for you response- and for your concern. It's brought tears to  my eyes that a stranger on the internet can care more than half the people we have seen during the past 6 very long months. My little boy is actually "okay" at the minute but keeps having these really poorly spells and obviously, the doctor has told us he has rasied T4 and TSH. They have asked for further blood  in 5 weeks which will then help them know how best to treat it i believe? I just feel like 5 weeks is so long when we've been fighting for this since January. I don't actually know his exact results- I will phone on Monday for those. Thank you for that advice. All I know is that in March, his T4 as raised but his TSH was normal. Last week's loods however showed rasied T4 (higher than March's result) and raised TSH as well this time. In the doctor's own words, she said "it as odd". He is really tired all the time, constantly hungry and his heart races. I have the opposite- I have underactive thyroid, but i know myself how bad it can make me feel when I get out of whack with meds (really bad when I was pregnant particularly) and it makes me so sad that he is feeling like this but doesn't understand any of it. Thank you again for your words. 

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  • Posted

    Dans advice is most helpful to many on here ......he  is a wonderful source of information on thyroid disorders 

    And will help you greatly, I’m sure .

    Mx🌹

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  • Posted

    Becky ... the reason the results should be printed out in full is that we need to see the actual result and then we need to see where those figures are within the range of your particular laboratory ..

    I phoned for  my first set of results and the receptionist  told me ...    Oh  ! they’re normal ... !!

    I then went to the surgery to ask for  a printed copy ...  and right across the top it said 

         *     A  B  N  O  R  M  A  L   * 

    I was furious !

    If I had left it like that saying normal , I probably would have had thyroid storm 

    Incidentally Becky  

    .....When I was so very ill .. with so many symptoms and thought I was going insane .. I was at the stage of just wanting to lie down and pass away ...

    I went to a private Dermatologist  who was so kind to me ... I had a sweat rash because of all the dreadful hot sweats  I was having all day every day 

    anyway she asked me a few questions and then announced !

    You have a thyroid disease and I’m going to write and tell your Doctor that right  now !

    Up till then my dr had fobbed me off telling it was just my age  or it was “ just the way you are “  

    What a joke !

    That was then ... and this  is now ......and I’m pretty damned good ..

    in fAct I’ve been great since then !  

    back to my old self again !

    No thanks to any doctors I may add    ( except for my lovely dermatologist that is )  🌸

    If I were a doctor presented by a little boy of two Years  , i would do everything in my power  to help that child ... 💙

    what’s wrong with them ?

    If you could afford it you could see an Endocrinologist  privately

    But take your last blood results to him !

    Best of luck Luvvue 

    Mx🌹

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