Help

My 27 yr old daughter was born with congenital hypothyroidism. She has been having numerous problems for a few years. In 2010 her blood result was tsh 0.28 t3 abnormally high. Result stated to contact patient which they didn't. Tsh went from 10 to 6 in a day (whilst in hospital in September. Then went up to 17 but t4 normal. Her dosage has been 225 for some time. She took vitamin supplements to aid thyroxine absorbtion when discharged which resulted in her throat swelling suddenly affecting breathing, Dr felt throat and thought a multi nodular goitre. ultrasound 2 weeks later said not. Her tsh went to 2 in a short time After the swelling went down. She is currently in hospital and her mental state has deteriorated markedly in 2 days. (paranoia), The hospital has underdosed her whilst in despite my daughter stating her dosage repeatedly When she went in in and her mental state was clear. She appears to have trouble converting Thyroxine? can anyone help as both hospitals have not let her see an endocrinologist despite a cardiac Dr saying she needed to see one after her stress treadmill test had to be stopped as they said it would be dangerous to continue.

I am very worried this situation will cause permanent damage as it has been going on for years,

Any help would be appreciated

3 Replies

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  • Roubyroo, FT3 over range usually means the patient is over replaced but TSH high indicates undermedication. If your daughter took her Levothyroxine regularly before being admitted recently, reduced dose for two days in hospital is unlikely to have had any effect, as it takes 7-8 days for the higher dose to wash out. If her FT3 is still high the hospital will have reduced her dose to bring it into range. Keep asking for an endocrinologist to see your daughter while she is in hospital or ask for a referral to be made when she leaves.

    The cardiologist should be able to advise whether your daughter has heart damage.

  • Hi, after telling me on Friday she could see an endo the Dr has turned round today and said she couldn't as her tsh of 2.78 was fine. They haven't retested her t3 since abnormal one in 2010. No explanation for throat swelling or inability to convert recent tsh 17, with normal t4.

    They want her to see a psyche team.

    If you've got a nail in your foot, would a Dr take it out so you could recover or give you anti depressants for chronic pain.

    This is how it feels they're treating her. Hasn't seen a cardiac Dr since sept

    Thanks for replying

  • Roubyrou, TSH 2.78 means it is very unlikely your daughter's FT3 is high, it's most probably on the low side. 2.78 seems high for someone on 225mcg which normally suppresses TSH.

    Does your daughter have a thyroid gland? If so, has she been tested for thyroid antibodies? Autoimmune thyroid disease (Hashimoto's) can cause fluctuations in TSH and FT3 but is unlikely in someone without a thyroid gland.

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