Synthroid

[Sue9823]

After complaining to my General Practitioner for months about my symptoms, I was sent to an Internist who sent me for a biopsy because my symptoms suddenly worsened. An u/s found a NEW 2.5 x 2.5 cm mass not there the previous year and a severe enlargement of the existing goiter. Despite taking 0.1 mg of Levothyroxine my left lobe is double the right and the mass is growing significantly every month. My voice is hoarse and I am choking on both liquids and solids and have trouble breathing when lying down.  The biopsy simply confirmed  the Hashimoto's I was diagnosed with in 2000. The Internist closed his file and said I was fine!!!!  NO I'm NOT fine!  I don't care that my TSH and free T4 & T3 are "normal"  Something is NOT right.  I went to see an ENT today and FINALLY found someone intelligent!   All he needed to do was look at me to say that I am severely hypothyroid and not getting enough hormone.  He advised me that the amount of hormone required was based on one's symptoms and weight NOT what the tests say.  He bumped up my dosage to 150mcg and said that I probably will need about 180mcg to feel normal again.  He said that in three weeks I'll start to notice my voice settling down, my skin to feel like skin again, my hair to stop falling out and to be less exhausted!   I have been taking levothyroxine but my new prescription is for Synthroid so I went to http://www.synthroid.com/PrescribingInformation.cfm where it actually states that the replacement dosage is approx. 1.7mcg/kgm/day  which is about .78 mcg per lb. I'm going to be sure to point that out to my GP next time!

[goolarra]

I'm afraid that in trying to keep my remark short, I might have been misleading.  

The 1.7 mcg/kg/day is the guideline that your doctor will see up on his computer screen when he looks up the suggested dose of levo.  Any doctor who has a clue will START you at a much lower dose, especially if you are over 50, have been hypo for more than a few months, or have a history of heart arrhythmia.  Then the recommended starting dose is 12.5-25 mcg.  Unfortunately, I fit all three categories, which didn't stop my PCP from starting me on 88 mcg.  And then the fun really began.  I ended up backing down to 25 mcg, getting on a beta blocker to control my arrhythmia, and then building ever so slowly over the next year.  I have now had stable labs and no hypo symptoms for over a year, and I have never been on more than 75 mcg.  Can you imagine what the initial 88 did to me?

Many of us don't feel comfortable until FT4 is midrange and FT3 is in the upper half to third of its range.  Once on meds, your doctor must continue to manipulate FT3 and FT4 levels until you are symptom-free, not just until you are in the very bottom of the range.  This leaves many of us hypo.  This is probably the one biggest complaint we hear here on the forum.

I agree with you completely that doctors stop treating too early and leave many of us with lingering symptoms.  We have to find doctors who listen to symptoms.  Congratulations on finding someone who has a clue!

[Sue9823]

I'm surprised by your remark.  My initial endocrinologist said the opposite.  Back in 2000 when I was diagnosed with Hashi, I began on the lowest dosage possible ... 25 mcg.  When test results came back I moved upward to 50 mcg and so on until I reached 100 mcg.  She said that was the level I needed to be at and my symptoms at the time went away as well.   I started feeling tired again in 2007 and by 2008 I ended up on disability with major depressive disorder - completely overwhelmed by everything.  Even though I felt that my thyroid was the source of my problems my suggestion that I needed more levo or perhaps some Cytomel was pooh-poohed like I was crazy.  We discovered that my vitamin D was 0.1 and my serum iron was 14 last summer when I REALLY began feeling physically unable to pick myself up.   My TSH, FT3 & FT4 have and still are "reading" normal, so my doctor thought the 100 mcg was plenty.  No one cared how I felt only that the tests were good.  I didn't know what the maximum dosage was so I figured that I was already at the top considering I had moved up three times!   Had I known that the pills are made up to 300 mcg I would have pushed harder!

[jennerfennerbenner]

Thank goodness! That's exactly what happened to me and THEN I found a good Dr. and I have NEVER felt better!!  Good luck!

[goolarra]

1.7 mcg/kg/day is a guideline for initial dosing when first starting on levo.  Once on meds, dosage has to be used to manipulate FT3 and FT4 levels to achieve elimination of symptoms.  Many doctors do not realize that their patients will not be symptom-free just because their FT3 and FT4 are "in range".  Many of us feel best when FT4 is about midrange and FT3 is in the upper half to upper third of its range.  However, many doctors think that the minute you pop up into the bottom of the range, their job is done.  They couldn't be more wrong.