going to see endo with son age 16, thyroid antibodies showing in blood tests, any advice please

my son had glandular fever over 2 years ago and has never been right since, lethargic, waking up tired, aching muscles, low moods, cold feet, sores in his soft tissue, noise and ears, generally not himself and over the last 4 months weird skin allergies, big weals coming up on scratching his skin.

After 2 years of taking him back to the GP, one suggested it might be his thyroid so offered blood tests. the first one in March came back with thyroid antibodies and TSH level of 5.85 , the doctor said we had to wait for 3 months for more blood tests, so the second in June, still showing the antibodies but the TSH level had dropped to 3.37.

The GP said this was all fine and they would leave it a year. I said no as my son is clearly not really well so finally my son was referred and I have the first appointment tomorrow.

Does any one have any advice for me please, eg what should I push for as it seems as if it is a battle to get the correct help.

many thanks for reading

5 Replies

oldestnewest
  • Firstly, don't let them box you in re tsh levels. Many people only feel well on a suppressed tsh. A specialist i rate highly says it shouldnt be over 1.5. So first off i'd ask for a trial increased dose.

    If that doesnt work, I would ask for a trial of ndt - but beware you will face an uphill battle. Many people (me included) cannot tolerate levo and do better on ndt - which contains t1,t2,t3,t4 whereas the synthetic stuff only contains t4

    Ask for him to be tested for coeliac also. The antibodies mean he has Hashimoto's, the nhs does not differentiate between Hashimoto's and other causes of hypoT. In the posts section i posted an easy-to-understand informative article on thyroid disease - incl info on link to coeliac, pernicious anaemia and mercury fillings

  • Thankyou so much for taking the time to reply, it's hard to understand it all isn't it.I will read your article. thanks so much

  • The best tine for blood to be taken for the tsh is as early as possible as the tsh is at its highest then. It tends to drop as the day goes on.

    Jo xx

  • good advise

  • Hi there, my 16 year old son is also facing the same symptoms. EBV positive, Coeliac and intrinsic factor negative although I am not convinced.... he is exhausted. Please ensure that his serum B12 levels have been checked too. After a long convoluted battle with the trust they will now be administering B12 injections and I am hoping this will help with his fatigue and mild neurological signs. My son is now under an endocrinologist for monitoring but what a struggle...get yourself gemmed up as much as possible and scutinize and cross reference every decision these medics make. Let me know how you get on ...children are such a worry...take care

You may also like...