I'm not sure if I've come to the right place but I am beyond desperate to get help for my son. So here goes...
I first took my son to see a paediatric endocrinologist last September as he was becoming increasingly distressed over his "moobs" and lack of development. Although he was growing he felt he wasn't developing like his peers. After seeing a consultant we were told he did indeed have delayed puberty and they ran a selection of blood tests. The consultant also referred us to a paediatric surgeon. We did not receive the results until I chased them and discovered that his thyroid was elevated at TSH 6.4 and T4 11.9.
We met with the surgeon in January and he was happy to go ahead with the breast reduction as my son met the criteria (not overweight and obviously distressed by his predicament). Just as we were leaving the surgeon called his colleague in as he wasn't happy with my son's blood results and the goitre in his neck. He referred us back to the endocrinologist as he was concerned that they hadn't picked up on the goitre and he felt something else was going on.
We went back to the endocrinologist who told us that it was nothing to worry about and we should proceed with surgery, He had further blood tests which again we did not receive the results to. We returned again to see the surgeon who look at my son's latest blood results and felt that he most certainly should be receiving treatment for his thyroid. He said he would again write to the endocrine team to get him some treatment.
We returned again to the endocrinologist where it was confirmed that my son does have antibodies but that no treatment was required. He was given yet more blood tests the results of which we did not receive.
Yesterday, we returned to the endocrinologist as I have become increasingly concerned about my son's health. We saw yet another consultant (we have not seen the same consultant more than once since we have been going). After presenting a list of symptoms to the consultant he immediately asked my son if he felt depressed or had an eating disorder! Was he making himself sick after he had eaten!!!!! It was like something from a sketch show. He said the "catalogue" of symptoms could be psychological. I am aware that my son is most definitely suffering from low self esteem; hence the reason I took him to the doctors in the first place. I wouldn't expect him to feel any other way about having breasts as a 15 year old boy!!!!! He offered to give him testosterone injections. When I asked why and whether he was developing normally he said "oh I suppose we should examine you". After examining my son he decided that no, he probably didn't need testosterone injections as his body was "doing it by itself".
We are concerned about his tiredness as he has his GSCEs this year. The consultant said that the exams could also be adding to his "depression". Everything we said he deflected as being a psychological issue. When we left the room my son and I just looked at each other and said "what the hell was that all about???". Honestly, it was as if the consultant had just attended a course and was role playing a completely different scenario.
The consultant offered a trial of thyroxine to see if it made any difference. He disappeared to ask his colleague and returned saying that there were not going to offer that. Instead they suggested going in to the day ward and having a series of blood tests in 3 months' time.
I have little to no faith in the endocrine team so I am now unsure what to do about the surgery. The surgeon said my son actually had breast tissue and that it was unlikely to go. The second endocrinologist said it might go but would probably take an extremely long time (without examining him). The endocrinologist yesterday said he didn't have much breast tissue and that if he worked out it may go (after examining the smaller breast).
We are so confused and I am trying to help my son the best way I can so I don't know whether to ask to be referred to a different endocrinology team. My son just wants the surgery but I am unsure if they will carry out the procedure until they know if there is anything else going on. I don't want my son to have surgery if there is an alternative solution available but equally I fully understand his distress over his breasts. He has now started to walk with his shoulders forward in an attempt to hide his chest. It is very upsetting to see.
My son's latest tests results are TSH 6.7 and T4 12.4 with antibodies. His symptoms include:-
Extreme fatigue (he played football and then spent nearly 2 days sleeping)
Weight gain around his middle
Short term memory loss
Insomnia at bedtime/sleeping during the day
Delayed tooth development (only just getting his last molar)
I am so sorry for the long post but I would be extremely grateful for any advice.