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Synthroid

My 10 year old daughter has been on synthroid (100 mcg currently) for almost two years. She is 4"8" and around 100 lbs. Originally at the age of 8 she had started her period and I had taken her to her GP at this time we found out  her TSH was 75. In the time that has passed we have reduced it to as low as 5.8 (Jan 2010) by increasing her dosage but it is starting to climb again, her latest test is 15.75 (Dec 2010). Her doctors seem to just want to throw more medication at the problem but as a concerned mother I am afraid we may be missing something else. Am I worrying too much? What testing would you suggest?  
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Avatar universal
Both of your daughter's antibody tests were positive for Hashi's, so she does have autoimmune thyroid disease.  The antibodies will eventually destroy all thyroid function, but the time period between appearance of antibodies and total destruction can be months, years or decades.  You can expect that while her thyroid is in decline, she will require more replacement hormones to compensate as her thyroid is able to produce less and less.

Your daughter is also still growing, and hormone replacement is to some extent weight-based, i.e. a person on a stable dose of meds at 100 lbs. would expect to increase if weight went to 150 lbs.

Her FT4 is very low.  It's below range, and midrange is recommended for FT4.  With FT4 not even in range, the increase to 125 mcg 4x per week and 100 mcg 3x per weeks is a pretty modest increase.  However, what's most important is if she's still suffering hypo symptoms (?).

I think it may be time to shop for a new doctor.  Any doctor who puts too much emphasis on TSH is questionable.  FT3 testing is also a must as you know since T3 helped you to feel so much better.

Keep in mind that although our chaces of getting another autoimmune disease are increased, it's still very rare...valuable information when diagnosing problems in the future, something to make other famly members aware of, but not to panic over.  

Perhaps your daughter would fare better with your doctor?

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Avatar universal
Yes, I am aware of the conversion of T4 to T3. I too am on Synthroid and FINALLY convinced my GP that I needed direct T3 replacement; with it came noticeable positive changes (a true believer in optimal thyroid function). Unfortunately the doctors seem stuck on using TSH values as their guide when it comes to measuring success in treatment of her problem. In this lab test her TSH ranges for the lab are .64-6.27 ulU/ml and her Free Thyroxine was .36 with lab ranges .65-152 ng/dl. There was no testing for T3. Her pediatric endocrinologist seems stuck on TSH values and Synthroid in that she has made head way with it. Up to this point she has been unwilling to discuss Liothyronine or Armour. She has had the antibody test done, both high. Thyroid Peroxidase 6821, range 0-60 au/ml and Thyroglobulin AB 890, range 0-60 au/ml. I had seen reference to other autoimmune disorders especially in children. While the internet is empowering it is also very scary so I want to make sure I am doing everything I can.
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Avatar universal
Do you have current FT4 results to go along with that TSH of 15.75?  If so, please provide the reference range as well since ranges vary from lab to lab, so have to be posted along with results.

What are her current symptoms?

I don't see any mention of FT3 testing.  T3 is the "active" form of the thyroid hormones; it's what the cells actually use.  T4 is the "storage" form of the hormones.  Our bodies cannot use T4 until it is converted to T3.  Some of us convert slowly and have to add a direct source of T3 to be symptom free.  So, FT3 levels are a very important piece of the puzzle...FT3, FT4 and TSH every time thyroid labs are run.

I'm only commenting on the thyroid labs.  I don't feel I have enough knowledge to CMP and CBC results to comment on those.

Thyroid peroxidase antibodies (TPOab) and thyroglobulin antibodies (TGab) should be tested to see if the cause of her hypo is autoimmune thyroid disease.  Although Hashi's is treated the same as hypo from any other cause, there are many good reasons to know what it is you're dealing with.  One is that once we have one autoimmune disease, we are more likely than the general population to get others.

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Avatar universal
I am sorry for the delay in my reply.

My daughter's original labs showed tsh of 75.401, t3 uptake 25.3, thyroxine 4.9, free thyroxine 1.2, Her lh normal for her age (less than .20), fsh normal (1.3), estradiol (less than 20) and prolactin 6.8.Additional testing includes ACTH stimulation panel 4.96 base line, 18.24 @ 30 and 22.17 @ 60, normal. They checked her bone age and it corresponds with her physical age. We went and had LHRH, sort of; they gave her the drug, drew blood but lost the samples so never performed the test. The doctor thought there was probably no reason to redo the test. Should we do more?

A little history-for her school entry physical at the age of 5 they did a blood test and found her to be anemic. All symptoms corresponded with that and she was treated accordingly. The doctor found her stored iron to be depleted so we supplemented. Her hemoglobin/hematocrit increased but not to normal ranges so after a year of treatment by her GP we were sent to a hematologist. They weren't much help. While there continued to be increases, they left me with "well someone has be to low normal". I understand they deal with terrible, terrible diseases but still I left very frustrated. My daughter's next physical her GP tested her folic acid, rbc and found it to be low (201). Supplementing with folic acid increased her hemoglobin/hematocrit so along we went, almost normal. I must mention throughout this whole ordeal every lab (over the course of 5 years) has a normal WBC of 5.6-7.5 (normal values) but her neutrophils are always high (55-75%) and lymph and/or MPV low. When I ask about this it's dismissed but I wonder if there could be a viral issue? Anyway until her period we had no idea of a thyroid issue. As my originial post mentions it has come down quit a bit but is back on the upswing, now up to 15.75. Her medications were increased to Tues, Thur, Sat of 125 mcg of synthryoid and Mon, Wed, Fri, Sun 100 mcg.

We have a happy, smart, fairly healthy, beautiful daughter and want to keep her that way so if you can help me do right by her I'd greatly appreciate it!!
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Avatar universal
There are a number of possibilities.

Has she had pituitary testing?  The high TSH combined with the early onset of menstruation might indicate that something is making the pituitary overactive. The pituitary is the master endocrine gland that controls both thyroid hormones and reproductive hormones, etc.

Does she have hypo symptoms?  If her TSH started at 75 and has been no lower than 5.8, we would expect her to be feeling pretty bad.

Is her doctor testing free T3 and free T4 as well as TSH?  These are the actual thyroid hormones and much more important in diagnosing and treating thyroid problems than TSH.  If you have current results of FT3 and FT4, please post with reference ranges which are lab specific and have to come from your own lab report.

Have thyroid antibodies ever been tested (TPOab and TGab) to see if the cause of her hypo is autoimmune thyroid disease (Hashimoto's thyroititis), the most prevalent cause of hypo in the developed world?

No, you're not worrying too much.  That's what mothers are supposed to do...

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