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:-
Goitre
Extreme fatigue (he played football and then spent nearly 2 days sleeping)
Hair loss
Weight gain around his middle
Gynaecomastic
Short term memory loss
Palpitations
Insomnia at bedtime/sleeping during the day
Joint pain
Constipation
Delayed puberty
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.
Many thanks.
Written by
Joysee17
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Hi his tsh is most definitely at a level that requires treatment I thought in the UK treatment would be given over 5 in America it's is over 3. I had loads of problems and had to go private as I had a lot of symptoms of under active thyroid but my tsh was only 2.7 and my gp wouldn't treat me. I can't comment on the breast tissue though. I went to see dr p he was great told me the right tests and confirmed my thyroid was seriously under active. You need to get free t3 test mine was really low.
Hello Joysee17,
Welcome to our forum where you will receive a lot of support and good advice.
Your poor son's treatment is appalling and as a mother I feel your distress.
Your son's TSH could be considered high and even some GP's will allow trials of Levothyroxine with a TSH of >5 and thyroid hormone antibodies, (although T4 doesn't appear too low).
If you have the test results ranges (numbers in brackets) it would help members to get a clearer picture. Also as an endocrinologist ran these tests he should have tested T3 which is VERY important.
I would without a doubt be looking else where. I don't understand why after seeing NUMEROUS consultants, Levo medication or further investigations haven't been suggested.
Below is a link to the ThyroidUK website which provides loads of useful info regarding thyroid issues.
Your treatment for your son is appalling. I really do sympathise as a Grandma of 4 boys. I am wondering if it would be a good idea to have the following tested as well - B12 - Ferritin - Folate - Iron- VitD. All are involved in the workings of the thyroid. I have just read how important iron is. So many teenagers are diet deficient in the above. It is worth a go.
My grandson who is 16 - was staying with me recently - and I had the above tested. He had Iron and Folate anaemia and low B12 and D. Had a feeling sleepy teenagers was a myth - and that there was an underlying cause.
We need the basics in place for our health to be optimal. Of course all the advice you have been given is good too.... I would also have the FT3 tested ...
Hope all goes well for your son. Maybe contact Louise Warvill for a list of Thyroid Endos who are supportive....
I hope you manage to get proper care for your son 😞.
My only thought was, if you are seeing a different 'consultant' in endocrinology every time, you might not actually be seeing a consultant but one of the registrars or other endocrine trainees instead. When I first had an NHS consultant appointment, I was actually seen by the registrar who had to pop out to 'discuss' things with a colleague i.e. ask her boss (the real consultant) what to say to me. Lots of us has appointments with members of the endocrine team simultaneously, and the consultant sat in one room and fielded questions the staff brought to him.
Sadly I gave up on the NHS and switched to a private consultant, but I have family members who have insisted on seeing the expert consultant each time they go to the hospital (I guess you have to strike the right balance between charming and belligerent). In any case, I don't think it would be unreasonable to ask for the surgeon and an endocrinologist to have a phone conversation to discuss the situation properly, rather than shuttling you back and forth like this. It's not uncommon for doctors from different departments to have proper discussions and make treatment plans in other areas like for cancer treatment.
If your son has another endocrinology appointment - phone the hospital and ask to speak to the consultant's secretary. Then when you get through to them ask (demand) to see the actual consultant - you can highlight the situation where everyone (all these different endocrinology doctors) has a different opinion and how distressing this is for your son. Usually they will oblige if you make a fuss, but if they don't then you could try complaining to PALS. I find the lack of continuity of care can be infuriating as it's such a waste of time repeating things and trying to understand all the doctors different opinions.
I do wonder if your son has definitely had a pituitary condition ruled out. It's not impossible to have autoimmune thyroid disease and a pituitary issue. You can find more information about pituitary problems online.
I was put on watch and wait with autoimmune thyroid disease despite it clearly making me very ill. In the end after much misery and waiting, I self treated (as I am an adult I felt I could though I'd rather not).
Perhaps a good start for you would be to get hold of your son's hospital record - so that you have access to his results. Also get any hormone blood test results from his GP surgery. Then you can see if he does have low testosterone or high estrogen and what longer term pattern his thyroid testing shows etc. You might even find some other hormone results of note in there.
With regards the working out ridding your son of the breast tissue - surely even if that was possible/worked it would also depend on the skin pinging back afterwards. If the breasts are sizeable then it seems that might not be aesthetically ideal especially if your son is a normal weight. Surgery might be the answer BUT if the cause is not dealt with, does your son risk developing more tissue?
Thank you so much for all your advice. After doing some investigative work it would appear that he has indeed seen 4 different consultants. A consultant paediatric endocrinologist and 3 paediatric consultants. The one we saw on Friday specialises in mental health and research! No wonder he didn't understand my son's symptoms. I'm flabbergasted at the direction the appointment took. He wasn't prepared to listen and just went off on a tangent without letting us speak telling us that 10% of eating disorders are actually men. He had absolutely no idea of physical symptoms of thyroid and blamed everything on depression.
I am hesitant to go ahead with the surgery as I just have a gut feeling there is something more going on. The surgeons seem more knowledgeable than the endocrinologist team.
A copy of a letter sent to our GP states that his haemoglobin and ferritin were normal except for a low testosterone in keeping with a mid-day sampling and his early pubertal staging. He does have presence of anti-TPO and anti-thyroglobulin antibodies. The results are only listed as abnormal TSH 6.7 U/l but with normal free T4 11.9 pmol/l. I don't have any other results unfortunately.
I should mention that there is a family history of hypothyroidism in my family. Both myself and my sister have borderline tests and my sister does have a large goitre which is very visible.
I am so grateful for any support/advice you can give. I am going to make an appointment with our GP tomorrow and ask to be referred somewhere else. We live in Sidcup in Kent so would welcome recommendation for all sympathetic endocrinologists in and around London/M25. We have been travelling to King's College which is not a pleasant journey so wouldn't be put off by distance if I could get the right diagnosis and treatment for my son. We are also willing to pay for an initial consultation but are not sure we would be able to pay indefinitely if a diagnosis is made.
Unfortunately, after playing tennis yesterday my son has been in bed all day and his goitre seems larger. It feels like we are banging our head agains a brick wall
I had a degree of gynaecomastia from about 15 to 18. I was too embarrassed to mention to anyone, and therefore sought no treatment. Thirty years later, I still shudder to remember the excruciating embarrassment of PE class, etc. When I left school, started physical work, left home etc, I lost a couple of stone, developed slightly more muscles, which helped the gynaecomastia.
However, at age 34, after a period of extreme fatigue and tiredness, I was diagnosed hypothyroid and prescribed thyroxine. This was the start of a period of muscle wasting and a return of the gynaecomastia. I was tested for testosterone (ok), sex hormone binding globulin (SHBG - was ok) and estradiol E2 (WAS TOO HIGH). This led to me being tested for Klinefelter Syndrome (result was negative). After that I was diagnosed as suffering from "Depression with hypochondriacal delusions" and prescribed antidepressants - this seems a common conclusion when doctors wont admit that they cant find whats wrong with a patient.
Now I self medicate, and have found that taking tribulus terristris (boosts the bodys own testosterone production) and letrozole/ anastrazole/ tamoxifen/ danazol (which inhibit oestrogen production) help me tolerate thyroxine.
That's my story, might not be relevant to your son's, but a few things to consider are:
- Hypothyroid & hypogonadal symptoms can be similar in men, so its hard to prove the underlying cause.
- Testosterone injections might help, though there is a risk of suppressing the body's own production of testosterone which may not be a good idea in a teenager. Also, some types of injectable testosterone can be converted to oestrogen by the body, which could make the gynaecomastia worse. As far as I know, this is why Proviron/mesterolone is sometimes used in teenagers with delayed puberty.
- SHBG goes up and down with thyroid function: it can cause problems if it is too low OR too high
- Even if your son DOES NOT have Klinefelter syndrome, it might be worth researching or contacting support group since they have a experience of dealing with gynaecomastia.
- If you speak to a medical professional (especially an endocrinologist) who seriously suggests that depression or any other mental illness is CAUSING your son's gynaecomastia, I would advise you to waste no more time talking to that "expert".
Thank you for your advice. It must have been awful not being able to discuss having gynaecomastia with anyone. I know how distressed and embarrassed my son gets and he is allegedly getting treatment!
We went to our GP today and explained everything to her. She was very supportive and understanding about our request for a second opinion. She was concerned that my son had not had a scan on the breast tissue as this is apparently standard procedure in diagnosing true gynaecomastia. She was even more concerned when she discovered that he hadn't had a brain scan for his pituitary gland or his thyroid.
Her worries were that if the underlying cause isn't diagnosed then the breast tissue will almost certainly grow back a point that Mabes raised above (well done Mabes). After examining my son she said he would also need nipple reduction and would need a plastic surgeon and not a general paediatric surgeon (which is what we have at the moment).
At the end of the appointment she said the information from the hospital was very conflicting and did not add up. She has agreed to refer us to the Evelina Hospital so fingers crossed this is a step in the right direction.
Hi it's very hard I have underactive thyroid myself it took years to diagnose me and it's in my family both sides I have had my son tested so many times as he has symptoms all tests have come back norm he also has gynaecomastia which I also have told doc for years they have always said its due to weight I argued it wasn't but at last he has been referred to a plastic surgeon ive been given four hosp to choose from and I don't know what one to choose at the moment as want the best for him he also has low self esteem because of it and is also 15yrs old I hope your son will get the treatment he needs shame we have to battle for it
Hello iv just registered in so that I can reply to you,
Do not give him tribulus unless FSH or T levels are too low. Avoid cows milk, and ensure plenty of omega 3/vitamin D3 and zinc/baron are in his diet. Indole 3 carbinol from broccoli can help metabolise estradiol into its weaker sister estrone. Resveratrol from red grapes can inhibit the aromatabase and bind to estrogen, preventing it from binding to receptors. Phytoestrogens such as those found in flaxseed can supplement the body's own harmful estradiol.
This will help create an environment for which testosterone can strive above estrogen. Take note of his hair and nail growth before and after.
Don't rely on the NHS, they strung me along the whole time until I was 18 just to tell me that they can't do anything as it's classed as cosmetic surgery (even though I used to get sensitive cramping sensations)
Does his nipples lactate? If so this can be be a sign of excessive prolactin as of which vitamin b6 may help.
Take the above measures now and there is a good chance that the mammary tissue will not fuse (if as you say is a late bloomer, take advantage of this as it gives you a lot of time to influence his development)
I developed before everyone else and had a mustache when I was 13, I outperformed others physically and yet still iv only just last year had to have gyno surgery. My point is that each case is different, I had high estrogen and testosterone for example. So if I was to have taken tribulus this would have just raised my estrogen as my testosterone was already in its upper limit and these hormones antagonise one another.
Good luck, if he exercises the good news is that cardio isn't the fix for hormones. Interval training is or weight lifting/burst . Coincidentally it's also the best way to train your metabolism, cardio trains your metabolism for the worse encouraging it to store carbs after exercise and can actually age your heart.
Make sure he has breakfast in the morning this spikes igf1, theyr not nice but oats and honey anything with good fibre and alternative to regular sugars is good.
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