I would like first of all to thank all who will read my post. I found this forum very useful a few years ago when I started searching more information about management of hypothyroidism.
Our story started when my son was born with hypothyroidism, diagnosed in the first days of life after a stressful c section and after we returned back to hospital with hypoglycaemic seizures. Took almost 2 weeks to get a diagnosis, and then we started treatment with levothyroxine as per guidelines.
We continued increasing the doses, pretty difficult control in the first 3 years, with TSH most of the time raised. It is important to say how painful was to observe few symptoms that NHS doctors ignored - noise sensitivity, lack of focus and interest (I never had a group picture at nursery because my son was always running, never sitting on a carpet to listen to a story), difficulty to fall asleep - we had to rock him all the time...and other behavioural subtle changes that prompted to request an autism assessment - which thankfully was normal.
His life changed dramatically when we switched medication to Nature Throid - after a consultation with an experienced naturopath in the US. My son was 3.5 years then and after this he was demanding his teacher to sit and read him a story! It was the first time he told me "mummy I love you"...his quality of life was so much improved. Unfortunately his bloods which initially were acceptable came back awfully abnormal after a year - TSH >100 when he was admitted in hospital with a chest infection ( happened twice in his life, is otherwise managing well common infections)...In retrospect his medication was suboptimal, it might have been the time when Nature Throid had production issues.
Obviously we were referred back to NHS and restarted back on levothyroxine...We continued like this for 4 years now, the only input from NHS is to check his weight, height, TSH and T4 and very briefly how is doing twice a year.
Who will deal with difficulty to focus at school, difficulty to organise himself, emotional distress when needs to manage the behaviour of other children, overall sensitivity to stress. ..This year other children were preparing to sit for 11+exam, we decided no to put any pressure on him. He is smart, very sociable kid and I feel so sad I cannot help him get the best of his youth years.
There is so much rustiness in this health system stuck in guidelines created for the sake of others benefit, not the patient's...
If anyone has been in a similar situation or if there is any paediatric endocrinologist who would be willing to approach his treatment differently, please let me know, I will be forever grateful...
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