Hi All, advice please. My 11 year old daughter has been suffering with hypo symptoms for a couple of years, I had her tested as I recognised her symptoms were similar to mine, she had two tests in 2016 6 months apart, both show her tsh levels as 3.9 ish the normal lab range is 0.2-3.8 and the doctor dismissed my concerns. I had her tested again on Friday and the paediatrician has just rang to say her tsh is now 6.6 (0.2-3.8) but t4/t3 normal (sorry I don’t have figures). I think her symptoms are quite severe but am I overreacting, could a tsh of 6.6 cause her to feel quite poorly?
Thanks
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Anna0778
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Yes indeed that level of TSH will make her feel unwell. She is way over range.
I suggest you discuss subclinical hypothyroidism with the paediatrician (is this a paediatric endo? If not maybe ask for a referral to one) or your GP. Subclinical hypothyroidism is where the TSH is between 4 and 10 and FT4 and FT3 are within range but there are symptoms of hypothyroidism.
If TSH is between 4 and 10 mU/L and FT4 is within the normal range
◾In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.
◾In older people (especially those aged over 80 years), follow a 'watch and wait' strategy, generally avoiding hormonal treatment. If a decision is made to treat, prescribe LT4 and recheck TSH two months after starting and adjust the dose accordingly.
◾In asymptomatic people, observe and repeat thyroid function tests (TFTs) in 6 months.
Follow up of people with SCH who are started on LT4
◾Reassess symptoms on treatment. If symptoms have improved, lifelong treatment may be considered. If symptoms have not improved or if adverse effects are reported, stop LT4 after a 3–6 month trial.
◾Once TSH has normalized, TFTs should be measured at least annually thereafter.
◾If lipids were elevated at initial assessment, recheck to see if they have improved adequately or the person needs therapy for dyslipidaemia — for more information, see the CKS topic on CVD risk assessment and management.
Thanks Susie, she has agreed to refer her to an endocrinologist, gawd knows how long that’ll take! At least we’ve found out what it is though, and hopefully we can get her well on the road to recovery before she starts high school in September! Fingers crossed!
First of all I am sorry your child has hypo at such a young age. It is bad enough when we're older and even then many of us remain undiagnosed, either due to not having been given a blood test for thyroid hormones or being kept on too low a dose.
Yes, a TSH of 6 could make her unwell as in other countries people are diagnosed when it goes above 3. The UK must be the only country in the whole world who will not prescribe until the TSH is 10+. You can get your daughter's blood test privately if GP wont do these:-
Free T4 and Free T3
The above two are rarely tested and you read on the following link the reason why these two are important. We can get home pin-prick tests from one of our two private labs.
Thanks for your reply. I’m not sure what the full range of results are as I have only spoken to the dr over the phone, hopefully the results will arrive at the GPs in the next few days and then I will pop in and get the full results printed off. Thanks for your help!
I really hope your daughter feels well soon and gets sorted with appropriate meds-its not fair a young child has to put up with this rollercoaster of a disease.😊
Thanks Michelle! It’s funny that people just think that thyroid disorders can be treated, I know from my own experiences that just because there is medication for this that it doesn’t mean you can be ‘cured’, I think rollercoaster is the perfect description! Glad I listened to my own instincts and pushed for further tests, funny thing is they mentioned ADD, symptoms are so similar, makes me wonder how many children are misdiagnosed?! 😞
My daughter diagnosed with Adhd and i asked for TSH test ....5 years after this diagnosis.....unfortunately we lost time....so her TSH IS 9.75 .....Do you believe that her symptoms will dissapear? she cant concentrate ....she is getting tired easily...
Yes just like so many people put on anti-depressants unecessarly. Yes my 7 month off work with hashimotos/graves so its not just put a tablet in your mouth and off you go!!😊 im so glad you are clued up on thyroidthat way there is no pulling the wool over your eyes where you lovely daughter is concerned.😊😊😊
Yes, I suppose in a way I’m grateful that I have it so I recognised the symptoms, drs have been very quick to dismiss me, I’ll wait to see what the endocrinologist says, should be interesting!
Hi Anna0778 I find myself in a similar boat with my son now 14 and totally know where you are coming from. Showing symptoms for about 4 years and have now been trying to get a diagnosis for the last 2 1/2 years. A recent blood test in A&E after an out of the blue (hopefully one off) seizure showed his Tsh at 6.5. The results were shown to an endo he had seen previously and he said no action til Tsh reaches 10. No examination, consideration of symptoms or family history. Waiting on another set of blood results and a second opinion but in the meantime he is still struggling.
For some reason there seems to be some strange reluctance to diagnose hypothyroidism in children and adults alike. It makes me very cross that a stranger looking at a few numbers on a blood test result can dictate that we as parents are neurotic about our childrens health. It's not as though we want them to be ill. Why do they wait until the damage has been done instead of nipping it in the bud.
Keep fighting. You are not overreacting. You know your child best and you know that she is not well. I do hope you manage to get treatment for your daughter soon.
This sounds awful, your poor son! Did they think the seizure may be related to the thyroid? I know you said you were waiting for a second opinion which it’s sounds like you definitely need but if you still don’t get answers then if you can afford it maybe you could consider taking him to see a private endo? My daughters last two blood tests were 3.9 ish but because the normal range for the GPs lab is 0.5-5.0, I was told it was normal, only recently discovered that as her blood tests were done at Alder Hey their lab uses a different range of 0.2-3.8, so I’m guessing she’s been over the limit for a while! Isn’t it hard enough being a kid without all this to contend with, it’s a good job we’re fighters hey? I think youve got to be with the NHS the way it is, especially children’s services 😞. Good luck to you and your son, hope you get some answers soon x
Hope you dont mind but was wondering how your daughter is getting on. My daughter has just started levo and experiencing hair loss. Was hoping to be in contact with another parent on this forum who has a child being treated with underactive thyroid.
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