Help and advice needed!!

Hi to all, our problems started probably at birth with our son who is now 12. Appx a year ago he started yr 7 and was bullied because of his size. He started having dizzy spells, this progressed and whilst at home in school hols had a pretty bad one, I took his temperature because he looked deathly and after phoning NHS direct I was told he was hyperthermic and if I couldn't get his temp up in 20 mins I was to get him to A&E because it was an emergency. It took me 2 hours that day to get him to normal levels. That is how we came to thyroid UK. After googling temp drops thyroid kept coming up, after another attack I took him to A&E and they did bloods his TSH was3.3 and his T4 was 13. I was told this was within normal range. After talking with G.P he agreed to do another test after 1 week the results were TSH 5.3 and T4 12 so this is out of range which is TSH 0.4 - 5 and freeT4 9-19. In the meantime we were struck off by 1 paediatrician because I demanded an earlier appt(before December) so we have another for end October. Our GP has refused to medicate and wants to leave it to consultant. Our son now has these temp drop episodes upto 3 times a week he has aches in his legs 24/7 and his quality of life is diminishing. He lost so much schooling last school year(down to 74%) The GP has said he needs medical staff one on one when he returns next week(this won't happen). He is putting on weight of upto 4lb a week. In summary where do we go with G.P? Where do we stand with school? We are pulling our hair out at the moment, can anyone help please?

[Barbara]

Hi krankybird,

I'm sorry to hear about your son's problems. What a worry for you.

"In summary where do we go with G.P? Where do we stand with school?"

I think the next step with the GP should be to ask for your son's antibodies to be checked to see if he is developing autoimmune thyroid disease - the most common reason for an under-active thyroid. If this is positive it would be another lever for you to ask for a trial of thyroxine (although from what you've said it looks like the GP isn't going to budge until your son has seen a consultant) and it will also help with the consultant appointment as he/she will have more information to work on.

A TSH above range but less than 10, with T4 within the reference range is called subclinical hypothyroidism. Unfortunately the official guidelines don’t recommend treatment until the TSH has gone over 10 despite several studies showing that earlier treatment may benefit. If you google subclinical hypothyroidism you should find a lot of information about this, particularly in google scholar.

tinyurl.com/yyodja This is a link to a large study on ‘normal’ TSH. The graph in it is very useful to show your doctor, and the consultant too.

What time of day were your son’s TSH tests done? They are highest in the early morning so best to get it checked as soon as the surgery opens, even by 11am it will have gone down significantly, reaching the lowest level in the afternoon. I’ve heard that there is some evidence to suggest that being tired and hungry can push it up too so if you get the test done before his breakfast that might help.

On the subject of breakfast and food – many people who are hypothyroid have episodes of low blood sugar. This can make you feel weak and shaky and I was wondering if this might be what you are describing when you mention your son’s dizzy spells. I used to get them a lot, I couldn’t go more than 2 hours without food, and I was told that I went really pale at the time too. I used to really crave food when this happened. Eating little and regularly with low glycaemic foods can help, which I did, but nothing really helped me much until I got my thyroid sorted out.

If you get your son to pace himself with activity that might help with the aches in his legs. Make sure he eats beforehand too, I felt like my muscles were ‘running on empty’ most of the time and used to get the most horrendous pain. I was completely unable to do anything heavy and/or repetitive.

Many hospitals will let you phone up (try the consultant’s secretary) and ask to be put on a waiting list for cancellations so it’s possible to be seen sooner if you’re prepared to go at short notice.

Re the school – many schools have a special needs co-ordinator so maybe you could try that route to get help for your son. Be sure to mention the leg pain as he may need to limit himself with PE etc, even standing for too long may cause him leg pain.

I hope this helps. Good luck and do let us know how you get on.

[Hidden in reply to Barbara]

Hi Barbara and thankyou for your reply, We have had his anti-body test done that was normal. He had tests done between 11 -12 am. I have asked our GP to test him weekly but he has refused and will only do them 2 monthly. I have spoken to the school nurse and she is liasing with SENCO at school but nobody wants to take responsibility for Jack, we are waiting now to see what they offer. I am going to sit and read what you suggest and hopefully we will get the answers soon. Thankyou