I know I wouldn't wait. If you can't see an Endo for three months, I'd get your regular doctor to do further testing and start treatment. Then you can have a bit more time to find a good thyroid doctor. Believe me, that is not easy.
If you do go back right away for testing, make sure they test for free T3 and free T4, along with a full panel of thyroid antibodies testing, and TSH, as well as any other test the doc wants to run. Free T3 is most important because it largely regulates metabolism and other body functions, and correlates best with hypo symptoms. When you get further test results, please get a copy and post, along with reference ranges, so that members can comment further.
His current doctor is a pediatrician. She indicated that thyroid disease is out of her league and I respect her for being honest. She really feels that he needs to see an adult endo. My next step is to call my insurance company to see if they can do something to expedite an appointment with someone! I am reallyupset because when I've called these doctors offices, I am talking to a receptionist with very little knowlege of the disease and they apparently don't beleive that this is urgent and I can't seem to get past them to talk to a doctor, nurse or even tech... I am very frustrated. I read someone else's post who indicated that as soon as the endo heard the levels (her son was over 500 TSH), the patient was was cleared to be seen immediately - wonder how she even managed to get to talk to a doctor in the first place!!!
Is there no other doctor that your family uses that could see your son right away? For immediate purposes it does not have to be an Endo.
My internist sends me to an endo - again too complex for him. Of course my endo is gone for a month to visit his family in india. The answering service reffered me back to the family doctor. and of course, my family doctor won't see my son until he's 18 anyway.
Based on the labs, it seems like your son should be starting treatment right away - the TSH level is very high, and the T4 level is very low. This is *severely* hypothyroid. Has your doctor prescribed thyroid hormone in the meantime, until he can be seen by a specialist? It is very important; levels like this can become dangerous.
Don't give up – I know it's frustrating.
In your situation, I think I would appeal to the pediatrician and also the internist and try to get them to at least start your son on thyroid med. If either would prescribe a starting dose and follow up in 6 weeks with more testing and then increase the dose, this would give you the time needed to find a good thyroid doctor. I don't see how they can ignore your son's TSH level and claim lack of knowledge/ability to do something as an interim action.
Agree with all the above. The TSH is very high and can be life threatening.
Normal level is < 3.5, with ideal between 1 - 2 for most people. 400+ is alarm level, as is the low t4 levels.
It shouldn't take a genius or specialist to start him on meds (T4) immediately, even while he is waiting to see an endo. Probably he should start on 50 mcg of T4 and building up by 25 mcg every 2 weeks, depending how he tolerates the meds up to about 100 mcg as a starting level. Then 4 weeks after getting up to 100 mcg, He should have his levels tested. IF his levels are still higher than TSH = 2.0, then he would need to increase meds again by 25 or 50 mcg, with testing again in another 4 weeks.
Standard dose is about 0.022 mcg / kg of body weight (i think).... but start a lower and build up gradually so his system isn't shocked.
your GP or his pediatrician should be able to start the treatment. IF they won't find another doctor who will start treatment.
He could go into hypothyroid shock. He could die. Please go see another dr if necessary. Whatever it takes, but get him started on meds.
Please be very assertive on this.
Hope this helps
FINALLY, I did finally get an appointmentwith a pediatric endo about 50 miles from home - after I had the doctors office fax the lab results over - they need proof that I was not exagerating his condition. His appointment is this coming Tuesday.
His ped still has not taken any initiative in starting him on any interim meds. While I repect that she may not feel competent in this complex area of medicine, I realize that something is better than nothing. I have been with her for 21 years and have always been VERY happy with her. I have five children - none of them were very healthy with a variety of different ailments - some quite rare and she has always handled them well. I am disappointed and frustrated with her now. But he will be eighteen in two months - The last of the kids to be seeing her. In the meantime, I can only continue to make
phone calls - Which is what I had been doiing all day today, AGAIN.
The more I have read, the more nervous I have gotten. The final straw was when my son called me from work and asked if a fast heartbeat was a symptom. I told him I wasn't sure but with everything going on I wasn't taking any chances. So I took my son to the ER. Ended up with a great ER doctor! Told him of the situation and he profusely apologized on behalf of his profession. He ran no tests - taking my word for the test results - why else would I come into the ER at that time of night? He got in touch with an Endo - Adult not Ped who told him exactly what should be prescribed (50 mcg of Synthroid) He also got this doctor to agree to see him within the next two weeks, I have to call the endo in the morning. He will then test my son again to see if the meds help and adjust the dosage as necessary. I am so happy! and relieved. The ER doc said several more times that he was sorry that I had to resort to bring my son to the ER for this but also mentioned that levels that high can sometimes be life threatening and he was glad I brought him in and that although after examining my son, he did not believe that my son's case was life threatening. But at least I'll sleep better tonight. By the way, my son's heart rate and all was good. the Doctor thinks he was just getting as nervous as I was about all the BS. Thanks for your support.
Good you were able to get in to see someone and start on meds – though not good that it had to be via the ER. I'm glad to hear you'll have some relief though, and be able to relax :-)