Daughter not doing well on levothyroxine - advice?

[wendaeh2892]

Hello - I have a 17 year old daughter who recently started on Levothyroxine (generic) after seeing an endocrinologist at the local children's hospital. A bit of background - starting about 18 months ago she was having heavy periods, about every 19-21 days. Saw a gyn who put her on birth control which made her very anxious, so we stopped after a few months. Over the course of last year she became more anxious and depressed, was complaining of being cold all the time, complained of not being able to concentrate. Her allergies got bad, and now she is on 2 daily antihistamines for ideopathic hives. Her face was breaking out terribly with acne. We had her see a psychiatrist who put her on antidepressants which made her much worse. As part of routine labs, he did a TSH, and it came out high at 7.1. My husband, both his parents, and a paternal uncle are all on medication for hypothyroid (levothyroxine). Went to see pediatrician who did other labs, then consulted with an endocrinologist and it was determined that she had subclinical hypothyroidism, no Hashimoto's. They said not to treat and watch for 6 months. I asked for endocrine consult and finally got in this July, and she was started on 25 mcg levothyroxine for 6 weeks, then raised to 37.5 on Aug 30. She is still tired and cold all the time. Mood was great for first 2 weeks since increase. She is due for her cycle this Thursday and starting last Tuesday she began feeling very anxious, depressed, and irritable. Since starting the Levo her periods have gotten heavier (now 24 days between) and PMS is much worse. Is this typical? Should we even be medicating? We have blood work scheduled again for Oct 13 and see the doctor for follow up on 10/29. Is this something I should wait out or call the doctor? Thanks for your help. Wendy
Labs
8/14/13 (done by gyn) TSH 5.21 (.45-4.5)
10/12/13 (done by gyn) TSH 4.13 (.45-4.5)
4/24/14 (done by psychiatrist)
TSH 7.51 (.45-4.5)
T4 6.2 (4.5-12)
T3 108 (71-180)
5/23/14 (done by pediatrician)
TSH 7.72 (.45-4.5)
TPO 12 (0-26)
FT4 1.01 (.93-1.6)
Thyrogobulin, Antibody <1 (0-.9)
7/10/14 (done by pediatrician)
TSH 6.16 (.45-4.5)
FT4 1.04 (.93 - 1.6)
TPO 7 (0-26)
Thyrogobulin, Antibody <1 (0-.9)

started 25 mcg levo 7/18/14
8/28/14 (done by endocrinologist)
TSH 6.4 (.45-4.5)
FT4 1.2 (.93-1.6)

Saw endo on 10/29/14. She will only do TSH and T4. TSH on 10/13 was 2.88 and she wants in under 3. Despite my daughter being cold all the time and exhausted, hot flashes, sore muscles, hair falling out and very dry, and trouble concentrating, she said it wasn't thyroid and she should come back in 6 months. My pediatrician ran extensive blood work, which was not back when we met with endo. She ordered another TSH which was drawn on 10/27 and the endo seemed angry it was done again and needless saying it would be the same. I did get her to switch from generic to Levoxyl 37.5. She would not do T3 test.

Got home and blood test results were back. Here is what I have (we are seeing an alternative Dr in Dec who is ordering the saliva test and a full hormone panel).
TSH 4 (.45-4.5)
T4 free 1.31 (.93-1.6)
Vit D 44.2 (30 -100)
Vit B12 1029 (211-946)
Ferritin 18 (15-77)
Hematocrit 37.6 (34-46.6)
Hemoglobin 12.8 (11.1-15.9)
Celiac - negative

I called endo and faxed results...I think she needs a higher dose of thyroid medicine??? Endo has not returned my phone call. Started iron supplements. Any ideas?

Thanks for your help!

[wendaeh2892]

Thank you...she has been taking D3; I added iron a couple of days ago and will look into magnesium.

[gimel]

If you cannot get her into a doctor until a month from now, you might consider going ahead and supplementing the two areas mentioned specifically by goolarra.  For the low D, taking 1000 IU of D3 daily should bring that up.  For the low ferritin, She could start with about 25 mg of iron and build up to 75 mg daily.  Some good forms to take are ferrous bisglycinate, or fumarate, or sulfate, or glutamate.  Along with the iron I would also take about 400 mg of some form of magnesium (other than mag oxide).  Even if the new doctor prescribes thyroid med, it would be good to start raising the D and ferritin levels in advance.  

[wendaeh2892]

Thank you. I have an appointment for her to see an alternative dr (MD; homeopathic) who does primarily hormone related testing and therapy and will do free T3 as well as check cortisol and sex hormone panel...but that appointment isn't until early Dec. We live in southern NJ and waited 3 months for the last endo appt. It just breaks my heart to see her so tired and unwell. She is trying to apply to colleges and take SATs again this weekend (on the Oct date she awoke dressed in sweats and under 2 blankets with goosebumps - had to run on elliptical and shower to warm up and drink 2 redbulls to stay awake. Also told this to endo who said it isn't thyroid. Her under arm temp the other day was 95 degrees (though it ranges to 96.6 at times).  Thanks for your help.

[goolarra]

I'd just like to add that your daughter's most recent FT4 is 57% of range.  Based on where many of us find symptom relief, 50% of range is the guideline for FT4 (until we each find where we feel best).  So, it wouldn't appear at this point that increasing her levo would be the best solution.  Her FT4 has just recently gotten to 50% of range, so you may see more improvement as conversion ramps back up.

As gimel pointed out, FT3 should be tested every time blood is drawn.  Refusal to test FT3 is a red flag for a bad thyroid doctor.

Adequate levels of both ferritin and vitamin D are necessary for the proper metabolism of thyroid hormones at the cellular level, which means levels might have to be well up into the ranges.  Your daughter's vitamin D is on the low side; ferritin is just about on the floor of the range.  You might want to discuss this with a dietician, especially in light of the heavy periods.  If D and ferritin levels aren't high enough, thyroid hormones can't get into cells to do their work.  So, even with adequate serum concentrations, you remain hypo.

I agree...find a new doctor.

[gimel]

So the Endo says it isn't a thyroid problem.  And with all those symptoms, no other diagnosis was provided and you daughter is told she should wait (and suffer) for another 6 months.  With a family history of hypothyroidism, all those symptoms that can be thyroid related, high TSH results, and the occasional low Free T4 results, and not even bothering to test for Free T3, that is pretty poor decision, and you should fire the Endo and find a good thyroid doctor.

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.  Symptom relief should be the most important consideration, not just test results.  

So, if you will tell us your location perhaps we can recommend a good thyroid doctor in your area.