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Total Thyroidectomy - Need correct dosage of Levothyroxine

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Old 11-23-2009, 01:04 PM   #1
Join Date: Aug 2006
Location: Strongsville, OH
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halley88 HB User
Total Thyroidectomy - Need correct dosage of Levothyroxine

I had a total thyroidectomy in 2001. Since then, it's been a nightmare to regulate my dosage. Since June 2009, I started having severe muscle aches in my legs, back, and feet and I've had severe fatigue, hair loss, dry skin, feel shakey, etc. I had a TSH test in August and it was 4.99. My doctor (Endo) said that's normal. The last three years, my TSH has varied from 1.5 to 4.99. How can it always be normal? This is the worst I've ever felt.

A few weeks ago I saw another doctor and told him how I was feeling. He upped my dosage of Levothyroxine to 100 mcg. It was 88 mcg. My muscle aches are feeling better, but now I'm dizzy. My head feels like it's in a fog. Can this dosage be too much? What should my TSH be? I felt better when it was in the two's. Also, when I get to much meds, I start getting heart palpitations, anxiety, high blood pressure, etc. When I saw the Doc a few weeks ago, my blood pressure was 150. It usually is 120. What is the happy medium? How do I find my right dosage?

I'm so tired of feeling bad. My Endo doesn't believe in checking T3, etc. I don't have a thyroid, so do I have to worry about T3 as well as TSH?

Please help me. I thought if I saw an Endo, he would know what he was doing with dosage. I've complained to him about fatigue and muscle aches for the past 3 yrs. He kept my dosage at 88 mcg. for all that time.

Please help me. I would so much appreciate it.


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Old 11-23-2009, 02:51 PM   #2
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Join Date: May 2008
Location: AZ
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javelina HB Userjavelina HB Userjavelina HB User
Re: Total Thyroidectomy - Need correct dosage of Levothyroxine

Sometimes I think there's a special place in hell for endos who put people through this, with their slavish devotion to the almighty TSH. Your endos is a special dunderhead because the biggest US endocrinology society says that 3 is the top number for TSH, and they are pretty conservative too and, IMHO, still practicing in the dark ages. Most healty people have a TSH of around 1 and studies have shown that a TSH over 1.4 significantly increases a woman's risk of cardiac disease and death.

You need some better testing done to figure out what is going on. Being stuck on 88mcg of Synthroid for so long has left you hypo for long enough to cause adrenal fatigue and this will interfere with your treatment. See if your other doc will order up some better thyroid testing for you or find one who will.

The tests to ask for are:

Free T3
Free T4
Reverse T3
TPO antibodies
TG antibodies
Vitamin D
Vitamin B12

And you will need to get yourself a saliva cortisol test to check your adrenal status. Alternative practitioners carry them or you can order one yourself online. If your adrenals are not functioning well, which can happen with long-term hypo states, you are not getting enough cortisol to transport your T3 into your cells. Adrenals need to be treated before thyroid hormones will work well if this is the case.

Sorry you've had to endure this for so long. You're not alone though and you can get better treatment if you can find find a doc who understands thyroid issues better. Hope this helps!

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