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GauravMD, Board Certified Physician
Category: Endocrinology
Satisfied Customers: 8266
Experience:  Special interest in Diabetes, with extensive experience in diabetic emergencies like diabetic keotacidosis
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My son has had congenital hypothyroidism and been taking

Customer Question

My son has had congenital hypothyroidism and been taking thyroxine since he was a few weeks old. He stopped taking his medication in October and has no obvious symptoms. I encouraged him to see a doctor last week so that he could see an endocrinologist but the doctor doesn't want to refer him until he is back on Thyroxine. His condition does not seem typical. He had some symptoms earlier on in the year but has since become quite well. In some ways he is better than he was on thyroxine. He is eating a lot and exercising. He has some food sensitivity and feels that certain foods cause his thyroid gland to swell and make his stomach ache. His hair is very thick and seems healthy, his hands are warm and his nails look fine. Can you tell me the best way for him to see a specialist and give an opinion as to what is going on here?
Submitted: 1 year ago.
Category: Endocrinology
Expert:  Dr. SH replied 1 year ago.

Thank you for your question.

The most important thing in his case is that he MUST be monitored with regular TSH levels.

Our aim with thyroxine treatment is to keep the TSH in range.

This is important, regardless of the way he feels with or without medications.

The reason why I say that is because thyroxine is an essential hormone for his development and various functions of the body.

So he must continue taking thyroxine and must aim to keep his TSH in the normal range.

This session is open for any further questions that you may have.
I would appreciate it if you rate me by clicking on one of the rating options at your end on the top right hand corner as that is the only way we, the experts, are credited on here for helping you out.
Kindest regards

Customer: replied 1 year ago.
Thank you for your reply, this is something I am aware of and that I have regularly told him. However this reply does not seem to have answered my question
Customer: replied 1 year ago.
questions. I am in need of a good reason why he would not have any apparent adverse symptoms having not take thyroxine for so long. Anything I say about the importance of continuing to take it is negated, in his mind, by his feeling better off thyroxine than he did on it. If I have more information at my disposal I can help him understand.
Expert:  wieyedoc replied 1 year ago.

Hi. My name is***** and I am online and available to help you today. Thank you for your patience.

Question and answer is just one of the services I offer. I can also provide you with premium services, such as live telephone or skype consultation, at a small additional cost. Let me know if you are interested.

As a father of five I can understand what you and your son are going through.

The bot***** *****ne? It does not matter how your son thinks he feels --without his thyroxine his body is on a downward spiral that will result in him crashing and burning. He can end up in a myxedema coma and die.

In a nutshell? He is a fool not to take his thyroid medication....and he will, eventually, learn the error of his ways. Hopefully, he will live through the experience.

I hope this is a good enough reason for you.

It's safe for you to press the positive feedback button now if you so desire. And, never fear, even after you press that button I'll still be right here to continue helping you, but, as I do work for tips, I want to make sure you are happy before rating me.

Dr. Rick MD FACS

Customer: replied 1 year ago.
Please can you give me an explanation also? Even if you do think it is too complicated for a lay person to understand. Or if it is a fact that is statistically correct but you cannot explain can you say that?
Customer: replied 1 year ago.
Thank you for your understanding. I think what I am looking for with the questions I asked is a grasp of the how and why of the situation that I can only gain from you as a specialist. I have spoken to GPs and to people on thyroid forums so I have already had the information you are giving me. I don't dispute what you are saying but for my son to listen I need it backed up by something more analytical.
Expert:  wieyedoc replied 1 year ago.

It is not too complicated: If he doesn't take his thyroid medication your son will die.

Simple. Straight forward analysis.....

I am sure that your son will listen if he survives his trip to the ICU with a myxedema coma.

Best of luck.

I realize that this was not the answer you were hoping to hear but it would be unfair to you and unprofessional of me were I provide you with anything less than truthful and honest information.

Surely, you prefer that I tell the truth rather than what you wish to hear. Because it reflects very poorly on me unless you press one of the top three feedback choices, keep this in mind when rating my answer and please do not punish me for being honest. I understand that this may not be easy to hear, and I empathize.

Even though my answer was not quite what you were hoping for, please understand that my priority was to provide you with the most honest information. With that in consideration, I hope that you found my answer useful. Please click the excellent feedback button so that I can receive credit for my efforts.

Dr. Rick MD FACS

Customer: replied 1 year ago.
Dear Dr Rick, I am not asking you to tell me it will be ok when your understanding is that it won't. I am asking you for an explanation as to why he feels fine and how it works. I don't need a PhD level dissertation on the working of his endocrine system but would prefer useful science to scare tactics. I wish to have some information to combat his distain. Threatening him with the potential of a coma has not worked so far, but answering the 2 questions I asked might
Expert:  wieyedoc replied 1 year ago.

What I have told you is not scare is the truth; which he will learn sooner rather than later.

Best of luck to you and your son.

Expert:  GauravMD replied 1 year ago.


This is Dr Gupta, MD.

Let me see if I can try to add to the information that you already have.

Can I know what the TSH level is currently (or the last time that you tested your son for the same)

It seems unusual that he is feeling fine, after being OFF thyroid meds for a few months.

Is he taking any supplements?

warm regards