Help with Child with Hyperthyroidism

Dear all,

I have been searching the internet for relevant forums for some help. I am writing as a friend of a dear family who have a little boy who has been diagnosed with Congenital Hyperthyroidism from birth, and has such has been permanently on Levothyroxine since diagnosis with a heel prick test and discovery that his thyroid gland was only partially formed.

 Joel, who has just turned 12 years old has recently been on 75mg of Levothyroxine per day until his recent blood test results came in. The local GP told us that he was to decrease his intake, alternating between 50mg to 75 mg daily. Joel’s last endocrinology clinic was when he was 5 years old at Great Ormond Street Hospital. After this date Joel was discharged and our doctor printed off blood test forms for his blood to be tested as and when his mum felt necessary.

Joel has not had any major issues up until recently, but of late we noticed changes in him. These include:-

1.       Being extremely sleepy - sleeping straight from school

2.       Weight gain – Particularly noticeable in the last 4 months

3.       Heart palpitations

4.       Panic Attacks quite regularly

5.       Pains in his joints particularly the hips and heels. His heels cause                him a lot of problems, excluding himself from some sports when bad. Investigating around the internet could indicate him to have Plantar Facilitis maybe?

6.       He complains of brain fog and struggles to concentrate at times

 After back and forth visits to his GP, and Joel’s mum contacting his old nurse at Great Ormond Street, he was referred to a specialist at UCLH. His mum sent in the blood test results we had, and a detailed explanation of his current health issues. Joel saw the doctor earlier this month.  He had his height and weight measured and had his voice checked and tested for onset of puberty. The doctor asked his mum why she had decreased Joel’s Thyroxine when his TSH results were as they were. She informed him that her GP had instructed her to do so. He explained the role of TSH and requested another blood tests. She explained the problem with Joel’s heels, but these were not checked at all. The doctor explained he did not think it was due to his Thyroid, but was a common issue in puberty and Joel’s use of Ibuprofen for pain control. Joel had more bloods taken while there and the results are below. His mum asked if there were any supplements or vitamins which could assist Joel, but was told there was not, just to treat him as normal. She also asked if there were any foods he should avoid, and again was told no.

 As you can appreciate we are a little concerned over this, as Joel is generally an active sport mad 12 year old. (Karate, Football, Swimming, Tennis, Bike Riding etc etc) But the symptoms above are significantly worse recently and are affecting his life and general wellbeing. It’s quite upsetting to see such a lovely 12 year old boy suffer like this.

I would be very grateful for any advice, help or experience on the above. In particular his pains in his hips and heels which we believe is Plantar Facilitis.

 We have no idea where to turn to for more advice and help in managing Joel’s problems. I thank you in advance for any help anyone can offer.

 Thanks for any advice

Neil

Here is the results from his latest hospital visit:-

 Joel has congenital hypothyroidism and was under GOSH until age 5 and then intermittently since then with the rest under your care. In general he is growing and developing well. The occasional palpitation and panic attacks sound pretty normal and the pains in his hips which have settled and healed are adolescent osteochondrosis and have recommended either topical or tablets of non-steroidals such as ibuprofen. Joel is growing well and doing well at school, year 7.

On examination he is a healthy boy with normal systems examination. He is in early puberty stage 3 and testes 6mls which is good news. 

I had a long chat with Joel and his mum about hypothyroidism and the need for ongoing treatment. He is generally very good and compliant with treatment. The last bloods were just slightly upper normal, TSH is satisfactory really and the FT4 we would probably generally leave for a child to grow into the dose rather than become hypothyroid. I have checked bloods today, after the month of adjustment of dose as below and recommend increasing the thyroxine back up to 75 mcg EVERY DAY as above, and will follow up in 6 months’ time.

PHOS Phosphate 1.44 mmol/L 1.45-1.78 L

NA Sodium 142 mmol/L 135-145

K Potassium 4.3 mmol/L 3.5-5.1

UREA Urea 5.3 mmol/L 1.7-8.3

CREA Creatinine 56 umol/L 46-70

WCC White cell count 6.46 x10^9/L 4.5-13.5

HBGL Haemoglobin (g/L) 138 g/L 115-155

PLT Platelet count 257 x10^9/L 150-400

FERR Ferritin 40 ug/L 30-400

FSH Follicle stimulating hormone 1.5 IU/L 1.5-12.4

FT3 Free T3 5.6 pmol/L 4.0-6.8

BILI Bilirubin (total) 6 umol/L 0-20

ALP Alkaline phosphatase 238 IU/L 0-390

ALT Alanine transaminase 27 IU/L 10-50

ALB Albumin 47 g/L 38-54

LH Luteinising hormone 0.9 IU/L 1.7-8.6 L

TSH Thyroid stimulating hormone 5.55 mIU/L 0.27-4.20 H

FT4 Free T4 21.3 pmol/L 12.0-22.0

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