My 13 year daughter with hypothyroidism

[invisiblyme]

My 13 year old daughter and myself have both been diagnosed with POTS.  Although my daughter also has hypothyriodism her TSH is 6.19 and her T4 is .93.  She is currenlty on 0.025mg of Synthroid.  I am very lost on all of this because I don't have any problems with my thyroid.  She has also stopped getting taller but feels very upset about weight gain, problems with her skin and hair.  Is this all to do with her thyroid?  If so will it eventually get better?

[gimel]

Don't just assume that because the doctor is an Endo that he is a good thyroid doctor.  Many times they are very rigid in their "Immaculate TSH Belief" and only want to diagnose based on TSH.  If they go beyond testing for TSH, frequently you will run into their use of "Reference Range Endocrinology", by which they will declare that any test that falls within the so-called "normal" limits is adequate.   That is a long way from being true.  Many members here can vouch that the ranges are far too broad for that to be the case.  Without getting into too much detail as to why the ranges are too broad, just let me relate that many members find that symptom relief for them required that FT3 was adjusted into the upper part of the range and FT4 adjusted to around the midpoint of its range.  

So wherever you go for follow up, you should make sure to request testing for Free T3 and Free T4, along with TSH.  If the doctor resists, then just insist on it and don't take no for an answer.  

If you have the name of a good thyroid doctor, recommended by someone based on personal experience, that is the best way to find such a doctor.  Remember that a good thyroid doctor is one that will treat clinically for symptoms, test for FT3 and FT4, and also be willing to prescribe meds with T3 in them if needed.

If you don't have a good thyroid doctor in mind, I have a name for you to consider.  I'll send info by PM.

[invisiblyme]

Thank you for all of your info.  She has been tested for the thyroid antibodies and they told me that they were good.  She has also had her vitamin D checked and it was low.  Her cardiologists specializes in dysautonomic nervous system disorders and said that thyroid problems and low vitamin D is common with POTS.  She also has mitral valve prolapse.  Her cardiologists is actually the one who started her on the Synthroid.  But she has an appt. in Feb. at UAB childrens hospital with an Endo doc.  They were having her go every month and have bloodwork done and it is gradually getting worst but they won't up her appt. until it gets over a certain number(which I think is crazy).  Her cardiologist said no way, so he started her on meds now.  My Dad is actually the one we both inherited the dysautonomia from and he has to take B12 shots but I have not had hers nor mine checked.  It may be a good idea to do that along with the other ones you mentioned.  once again Thank You and I would like to stay in touch if I need to bounce anything off of you:)

[gimel]

It will get better for your daughter if she has a good thyroid doctor that will treat her clinically, by testing and adjusting levels of the biologically active thyroid hormones, Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief must be all important, not just test results.  Test results are valuable mainly as indicators during diagnosis and then afterward to track levels of FT3 and FT4 as meds are revised to relieve symptoms.  Since she is only 13, you are going to need to learn about thyroid problems, symptoms, diagnosis and treatment, in order to be her advocate for getting the treatment she will need.  

A good place to start is to read this letter written by a good thyroid deoctor for patients that he consults with from a distance.  The letter is sent to the PCP of the patient to help guide treatment.  Note the clinical approach as opposed to relying on TSH, or using "Reference Range Endocrinology".

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

The dosage of 25 mcg of Synthroid is likely a starting dose.  When she goes back for follow up, you should request that she be tested for Free T3, along with Free T4 and TSH.  If she hasn't been tested for the thyroid antibodies, TPO ab and TG ab, then that should be done as well.  Those tests will determine if the cause for her hypothyroidism is Hashimoto's Thyroiditis, which is the most common cause.   Hashi's causes gradual destruction of the thyroid glands.  The loss of thyroid hormone production has to be offset with gradually increasing doses of thyroid meds.  

Many hypo patients also have low levels of Vitamin A, D, B12, iron/ferritin, zinc, magnesium and selenium.  It would be good to also test for those sometime soon.