Daughter feeling worse on levothyroxine

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


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)

11 Replies

  • I will make a couple of comments and I'm sure others will reply. Hypothyroidism quite often shows a familial pattern, you can trace it back through the family. I can trace it back through my mother and father (both hypo) to my paternal grandparents and possibly a maternal grandparent. People can react differently to thyroid medications, some will get a reaction to the fillers and binders that other people will do just fine with. You might try a different brand. Some do much better with some T3 added (Levothyroxine is just T4) but this is difficult in the UK. One thing I would suggest is a full female hormone panel, I have a close family member that was quite low on progesterone which has quite an effect. She also had heavy periods. Others will mention checking B12, folate, full iron panel, vit D. One study showed low iodine in school age girls, you want adequate but not too much, 150mcg is the minimum daily amount. Many people find changing the diet and getting rid of gluten and dairy and sugar helps even when the antibodies are low. You will have to be determined, doctors quite often are not all that helpful. PR

  • HI You can feel worse when starting on the meds and often takes a year to feel really better.It may be that she will also need T3, in time too.Any way she needs a FT3 test for a full picture.


  • 25 and 37.5 mcg of levo are trivial amounts, less than the starting dose used by many doctors. The body has a control mechanism to regulate the levels of T4 (levo is T4). When you take a small amount of T4 the control mechanism detects the T4 and regulate down the amount of T4 it makes, resulting in the levels in the body staying about the same.

    Basal temperature is a better indicator of thyroid state, and whether a person needs more thyroid hormones, than the blood tests.

    T3 is the active thyroid hormone and your daughter's T3 is good. Good (or high) T3 with raised TSH can be an indicator of thyroid hormone resistance. This is genetic and your family history would also support this. Thyroid hormone resistance runs in my family and I have compiled a lot of info on it. It is too big to post here, so if interested send me a Personal Message with your email address and I will send it to you.

  • your daughter is very clearly HYPOTHYROID not just sub clinical

    However it seems no one has bothered to check FERRITIN

    given previous heavy periods and untreated hypothyroid her ferritin will be on the floor ..........it must be over 70 before her body has any hope of converting the T4 in levo thyroxine into the T3 her cells are screaming for

    If i am proved right ...............( never been proved wrong yet and my 9 yr old grandaughter was in same boat ) She will need iron plus at least 500mg Vit C to bring levels up and this takes months during which time she needs T3 not levothyroxine

    You may find only a phychiatrist will prescribe it as far too many endos fail miserably to face the most basic biological facts of the bodys ability to utilise levothyroxine

    She also needs to take a really good multi vitamin before bed as all her vitamin levels will be similarily low

  • Hi reallyfedup - please excuse my ignorance, but is ferritin different from other measures of anemia? She had hemoglobin 13.7 (range 11.1-15.8) and hematocrit 40.9 (range 34-46.6) done before, so I thought iron levels were ok. I appreciate your help.

  • Ferritin is stored iron and has to be measured separately as does folate

    You can technically not be anaemic but still very low in Ferritin which is trashed by the hypothyroid situation long before any thyroid test shows hypothyroid

    same thing happens to vitamin B levels and Vitamin C

    problem is most Endos do not know or face the issue

    I did post links to papers on inability to utilise levothyroxine when ferritin is not above 70

    Seems I need to get them pulled up again as a sticky

  • She could be low on iron storage, ferritin, due to her excessive bleeding. This will inhibit her thyroid to function properly.

    Please go back to the doctor and ask for this to be tested, have an idea of her levels; so, she could start supplementing with iron. Retest every 6 months.

    Regardless of the family history, vitamins and minerals deficiencies will make the thyroid struggle to 1/produce enough T4; 2/ convert it into T3. Two separate mechanisms/problems/routes for treatments.

    Addressing all these deficiencies is a first step towards feeling better.

    Check this link, as it has an eye opener/learning curve for many.

  • I agree with reallyfedup about the ferritin. My daughter has very low ferritin (about 3 or 4) if she doesn't take iron regularly - 210mg of Ferrous fumarate once a day. She took 3 a day to get her ferritin levels up to something normal. Forget about the 14mg over-the-counter ferrous sulphate which make people terribly constipated. Low ferritin makes my daughter really tired and a bit low-mood-ish.

  • Hi, my health issues were similar to your daughter's back when I was a teen. The heavy periods stopped after I lowered my increased levels of prolactin (smth to look into). My ferritin was already 27 at that time, so quite low. And it is playing a pretty important role in the mechanism of delivery of free T3 into the cells. I'd check the sex hormones panel and ferritin, B12, folate, vit D and cortisol levels (via 24 hour saliva test), since it appears that your daughter has a problem utilizing the available thyroid hormones. And make a new post with these test results. The problem should show up there somewhere.

  • This is a link re a low dose of thyroid hormone and if you go to the date November 20, 2002 to read the question/answer you may find it helpful too.


  • Hi - just got back from endo. She will only do TSH and T4. TSH on 10/13 was 2.88 and she wants in under 3. Saw her today and despite my daughter being cold all the time and exhausted, 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 end. She ordered another TSH which was drawn on 10/27 and the endo seemed pissed 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. Also add ferritin? My pediatrician said everything was ok.

    Thanks for your help!

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