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Old 09-21-2012, 09:30 PM   #1
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Are we on the right track?

My 16 year old daughter has suffered with lots of strange symptoms for about 3 years now (muscle pain, dry skin, feet and hands cold, numb and tingling, headaches, dizziness, brain fog, can't lift her arms up over her head and weight gain. The muscle pain is what bothers her the most. She notices the muscle pain most when she exerts herself like climbing stairs, running and playing soccer. Over time, the pain has gotten a lot worse. To the point where she really cannot continue to play soccer and get around easily. She was tested a few times for thyroid. A couple times, her TSH was outside of the range but when she was retested the TSH was in range, though on the high side and her FT3 and FT4 were in range but on the low side. These doctors insisted she did not have a thyroid problem. To make a long story short, we have once again looked into the thyroid with a new doctor. I brought in her previous tests and he retested her again.

Here was the results on 8/7/2012:
Her result Suggested range
======================================== =====
TSH 3.84 uIU/mL 0.50-4.30
FREE T3 [L] 2.85 pg/mL 2.90-4.60
FREE T4 0.82 ng/dL 0.54-1.24

At this point he said she was hypothryroid. He said her previous test indicated the same thing and he prescribed:
CYTOMEL, 2.5 MCG LA CAPSULES take one capsule
LEVOXYL 75 MCG TABS (LEVOTHYROXINE SODIUM)
She takes one Levoxyl tablet a half hour before breakfast along with one cytomel capsule

The Cytomel comes from a compounding lab in Waltham, MA. It says T3 on it, not Cytomel.


She was on this for 6 weeks and saw absolutely no change. We went back in and she was retested.

Her result on 9/17/2012 - this past Monday
Her result Suggested range
======================================== ======
TSH 2.03 uIU/mL 0.50-4.30
FREE T3 [L] 2.71 pg/mL 2.90-4.60
FREE T4 0.74 ng/dL 0.54-1.24


He then said the medication needed to be increased so she is now on:

CYTOMEL, 2.5 MCG LA CAPSULES take two capsules
LEVOXYL 100 MCG TABS (LEVOTHYROXINE SODIUM)
She takes one Levoxyl tablet a half hour before breakfast along with two cytomel capsules


The doctor said he wasn't surprised she didn't feel better because though the TSH came down, it is still too high but more importantly, the Free T3 and Free T4 need to go up. He indicates when those go up she should begin to feel better.

Now my question is, for those of you that have more experience with these tests, medicines and how the thyroid functions, do you think this doctor is on the right path? Is this the right medicine? Does it make sense that she hasn't felt any improvement? Can all this muscle pain be caused by the thyroid? Should I be doing anything else to help her get better?

I am on here, reading all the stories and questions and answers and trying to understand these thyroid issues. I am asking these question because I can't stand any longer to see my kid feeling like crap. She used to be such a happy young girl but she is now becoming depressed, so sad and even angry at times. I can't say I blame her as it has been so long without a diagnosis and the pain is stopping her from many things. And even now though this doctor indicates she should feel some relief when we get the medicine right, she hasn't seen the slightest bit of change and I am sure she is wondering herself if we are on the right track.

We live in Central Mass. Appreciate your feedback and any advice.

Last edited by Robin18; 09-21-2012 at 09:40 PM.

 
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Old 09-21-2012, 10:08 PM   #2
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Re: Are we on the right track?

Quote:
The doctor said he wasn't surprised she didn't feel better because though the TSH came down, it is still too high but more importantly, the Free T3 and Free T4 need to go up. He indicates when those go up she should begin to feel better.
This statement speaks volumes that this doctor is your daughter's thyroid angel. If all MDs were like him, boards like this would have no purpose. To say I think he's on the right track is feint praise. Truly. Thank your stars for this man!

Thyroid hormone is not an instant fix. It takes time for the levels to build up and for the body to get used to having hormone it's been struggling without for years. Once the patient titrates to the optimal dosage, it may take a few months more for the healing process to complete. One month of treatment is far too soon to expect a cure. Recovery will come slowly and gradually. It won't announce itself with fanfare. It will happen with quiet realizations that a symptom has improved or is now gone. It simply won't happen all at once.

Yes, low thyroid definitely can cause that degree of muscle pain.

There is hope for every hypoT patient who has the cooperative aid of a thyroid-savvy MD. Unfortunately, that kind of MD is too rare. I would be very surprised if your daughter doesn't have a complete recovery in the care of this doctor, optimistically by the end of the year... or more conservatively, by next spring.

Good luck to you both.
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Old 09-22-2012, 07:45 AM   #3
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Re: Are we on the right track?

midwest1,
Thanks so much for the reply. We will have to try our best to be patient as the medicine does its thing. Tell that to a 16 year old I did ask the doctor if we could see him every 4 weeks instead of 6 weeks to speed things up. I am not sure if that is reasonable; he has not responded to me yet.

I do like this doctor. He does listen to her issues and he seems like someone who will work with us. I got the feeling he did not understand why the earlier doctors did not treat her. He simply said, in his view, if you are outside or near the outside of the range and you have a lot of symptoms, you should be treated. I like him even more based on your feedback.

One thing I am a little confused about is on her cytomel prescription. Hers seems so low compared to others here. She is only on 5 mcg cytomel now. I see most people begin at 25 mcg. As I mentioned, hers says T3 on it and comes from a compounding lab. Is that the difference? Or is the doctor siding on the side of caution which is fine with me.

 
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Old 09-22-2012, 09:02 AM   #4
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Re: Are we on the right track?

Sounds like a great doctor to me! Did they test the thyroid antibodies yet? If not mention it to the doc. It will take some time to get those hormones where they need to be. Test should be repeated every 6 weeks and meds adjusted accordingly( 4 weeks isn't quite enough time to let the meds work). Ask for TPO, antithyroglobulin ab, and ana to see about autoimmune thyroiditis. I would also reccomend a thyroid ultrasound. Is there any family history of thyroid dysfuntion, nodules, cancer?
As far as the meds go everyone is different and responds differently to the meds. The key is frequent testing and increase accordingly. Stop increasing dosage not by the numbers but when your daughter feels good again. The poor dear, I hope she feels better soon.

 
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Old 09-22-2012, 09:36 AM   #5
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Re: Are we on the right track?

The other doctors didn't start treatment because of the archaic information they're all taught in med school. Your excellent MD probably goes less by the textbook and more on common sense. If you had been reading personal stories on this board for as long as I have, you'd understand what I mean. There is a LOT of stupidity out there regarding when and how to treat hypoT.

Beginning dosages for a hypoT person must be "low and slow". Going too fast puts the person at risk for heart arrythmias (mostly if older than 60) and adrenal stress. The hypothyroid body doesn't quite know what to do with all that extra hormone in the beginning. It needs time to adjust. That's why it is slightly surprising that the MD started her out at 75 mcgs of Levoxyl and is already increasing it at only 1 month. Perhaps he has success doing it that way... or maybe your daughter's youth is the guiding principle.

Her Cytomel dose is conservative because it's a starter dose and because it's four times more potent than the same amount of Levoxyl. It's T3, the "active" hormone. It may not be her eventual ideal dose, but for now it's fine.

If you'd like to learn all the basics of thyroid disease, Thyroid for Dummies by Dr. Alan Rubin is a great primer. If you can persuade your daughter to read it, she would then be prepared for the rest of her life's thyroid treatment and presumable encounters with those 'textbook' MDs who will want to undertreat her the way they tend to do. An educated thyroid patient almost always achieves better health and thyroid status than those who leave it all up to the MD.
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Last edited by midwest1; 09-22-2012 at 09:37 AM.

 
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Old 09-25-2012, 08:54 AM   #6
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Re: Are we on the right track?

Thanks Bethany, I am checking on the thyroid antibodies tests and the thyroid ultrasound with the doctor. This doctor responds to emails so that is another good thing. If I have a question, I can ask right away.

Thanks midwest1, I have ordered my book.. Thyroid for Dummies

 
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