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Thyroid Disorders Community
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13 year old son's symptoms, any opinions?

I'm trying to see if his symptoms fit any autoimmune disorder.  He is 13 now.  Background:  Age 5 doctor said he has psoriasis because of peely, scabby, oozy skin on his legs and arms that went away after 2 years.  Age 7 developed vittiligo (spots without pigment) on his belly and sides that grows bigger as he grows.  Age 9 sudden change at school after always doing well.  He couldn't focus and had no concentration and still is that way.  Doctor said he has ADHD and gave him Adderall which he still takes.  He is the opposite of hyper, sleeps a lot and seems almost lethargic to me sometimes.  He is failing school now because he can't concentrate.  Age 11 started being "allergic to the cold".  Two years ago he went outside in the cold and came back in with hives all over his body and his hands, feet and face were so swollen he looked like a cartoon of himself.  This only happens in cold weather, not in the summer.  Doctor sent him to allergist, said he is allergic to our cat.  I kept him inside for 4 days with the cat, no crazy symptoms at all.  Next day I told him to walk around the block in the cold, he came back in with hives and swelling.  This has been going on for 2 years and happens whether at home, school or across town.  Doctor gave him Singular at night, Zyrtec in morning, Benadryl everyday, gave me 2 EpiPens and called me a bad mother for not getting rid of my cat, he says it is not cause by the cold.  I started taking pictures and begging for bloodwork which he finally got last week.  He has thyroid antibodies "through the roof", very high tsh and high t4.  Doctor took more blood to confirm it cause it was so high.  Doctor says thyroid would not cause his crazy "allergic to cold" symptoms.  My son is also very grown for 13 in my opinion, 5'8" and had to start shaving at age 12.  Trying to piece it all together or am I just a crazy mom?  Thanks!

I posted this in autoimmune earlier, but I've been reading the thyroid area and I think my son may have hashimoto's or grave's from his symptoms.  How in the world do you get your test result numbers from your doctor?  I tried to look at my son's labs and doctor acted like I was cheating of a test!  I really dislike doctors!  I'm angry, they should have listened to me 2 years ago.  Sorry for the rant.
7 Responses
Avatar universal
With the  high level of antibodies, and symptoms, it sounds like your son has the most common cause of diagnosed hypothyroidism, which is Hashimoto's Thyroiditis.  With Hashi's the autoimmune system somehow erroneously identifies the thyroid gland as foreign and produces antibodies to attack the gland.  This continues until the gland is eventually destroyed.  To offset the loss of thyroid hormone production, thyroid medication is required.  

The most difficult part of treating Hashi's is finding a good thyroid doctor.  By that I mean one that will treat clinically, by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just blood test results.  

In the US doctors are required by law to give you a copy of lab test report, upon request.  So I think the first thing needed is to get a copy.  It sounds like the doctor is being very defensive about the lab test results, because he should have done something long ago and now he is embarrassed for you to see the actual results.  So insist on a copy, and if they resist, remind them that they law requires it.  Don't leave until they give you a copy.  

Then, when you have the copy, please post results and reference ranges shown on the report, so that members can advise further.  
Avatar universal
Thank u so much for your response.  I feel more at ease now reading everything here.  I will see which endocrinologist he can go to with insurance and call to make an appointment.  I will definitely get a copy of his labs.  I can stop jumping up and down at the doctor office and take action!  Thank you.
Avatar universal
Just because a doctor is an Endo does not mean that he is a good thyroid doctor.  Many Endos specialize in diabetes, not thyroid.  Also, many have the "Immaculate TSH Belief" by which they only want to test and use TSH as the diagnostic for thyroid issues.  That absolutely doesn't work.  Others will test beyond TSH, but usually only for Free T4, and then use "Reference range Endocrinology", by which they will say that a test result that falls anywhere within the range is "normal" and adequate for you.  That is also incorrect.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation.  The letter is then sent to the participating doctor of the patient to help guide treatment.  In the letter, please note the statement, "the ultimate
criterion for dose adjustment must always be the clinical response of the patient."

http://hormonerestoration.com/files/ThyroidPMD.pdf

So, if you will tell us your location, perhaps a member can recommend a good thyroid doctor in your general area.  
Avatar universal
Thanks.  I'm in the center of Kentucky (middle of nowhere).  There are only 6 endo's in our insurance network and they are in Lexington KY and Louisville KY.  I will call around and ask if they treat a lot of thyroid patients and how.  
Avatar universal
There are several prospects for you to consider in this link to patient nominated Top Thyroid Docs in the Kentucky area.

http://www.thyroid-info.com/topdrs/kentucky.htm

This site is not always 100% correct, but it is far better than starting from scratch trying to sort the prospects from the suspects.  I always read patient feedback to see if there is evidence that the doctor is willing to treat clinically, for symptoms, and also if willing to prescribe meds containing T3, if necessary.  
Avatar universal
cold urtica/hives is also associated with autoimmune diseases and problems with the thyroid.  You may also want to check his back by drawing with a pen that does not have the ink point out.  If you see a mark left behind this is called dermographism or also called dermatographism this disease is also associated with autoimmune disorders of the thyroid.
If your son is advancing rapidly this can be a result of an endocrine disorder that is effecting growth hormone from the adrenal or pituitary gland. This would effect concentration, mood etc,  
Vitiligio is also associated with autoimmune disorders.
You might want to look at (APS1) Autoimmune Polyendocrine Syndrome Type 1 and 2.
Or (MEN 1 and 2) Multiple Endocrine Neoplasia.
Avatar universal
Thanks for the info.  I will check it out.  Doctors should be required to read these forums, they could learn so much :)
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