Thanks for sharing what you're going through...I too have had a total thyroidectomy and thought that after 2 years of my lab 'numbers' being in line with what my doc(s) want to see, I'd actually feel better. This is not the case! My neoplastic endo does not really want to hear about how I feel, he just looks at the numbers and scans (which have been clear for 2 years post-surgery now!)and basically dismisses me. Shortly after my last surgery to remove the 2nd 1/2 of the thyroid I complained, and cried, to him about my fatigue was effecting my life so negatively that he was surely missing something. He sent me for a sleep study thinking I had sleep apnea, I snore, which I did not, but was instead diagnosed with narcolepsy! I've been on narco meds to keep me awake during the day since and really can't function without them, but I truly think that the narco diagnosis was a mistake and that my fatigue is still due to hormone issues, specifically related to my thyroid, or lack of one!
I have gained almost twice my body weight beginning about 5 years prior to diagnosis, mostly with my 2 pregnancies but even before that. I had talked to my family doc about the fatigue and weight gain that started almost 10 years ago and how it effected every aspect of my life basically changing who I am. I was always active, into sports and worked out almost everyday running, lifting weights, aerobic classes, yoga...I worked and went to school and had a full social life and always had extra energy to spare...and could eat the world without gaining an ounce! As I started to decline I would complain to my family doc every so often over the years and he would run the obligatory TSH test that came back 'normal'...or so they said. I had always been just on the cusp of abnormal but still within normal range and no one ever thought to test further! Even when I had 3 cancerous thyroid tumors my TSH fell within formal normal ranges but still on the high side of 'normal'. It wasn't until a pituitary adenoma (a small tumor) was discovered and further tests were ran that an endo from Mass General saw the whole picture. My T4's and T3's and thryroglob's and blah biddy blah's were all off indicating Hashimoto's...and eventually the thyroid tumors were found, removed, and determined to be cancer.
So...here I am a few years later, tired, fat, depressed and on .175 mgs of levoxyl (like you), which is pretty high AND the narco drug Modafinil (which works on the hyopthalmuses inability to produce orexin (sp?) which keeps you wakeful during the day. - not an amphetimine - which might help with my weight!). I'm on a mega dose of the Modafinil and still crap out every day sometime between 11am and 1 pm. I try to cram lot's of caffeine into my body so I can get somethings done during the day, but that just makes me spacey and useless.
I see a naturopathic doc who explained to me that the thyroid, in tact and without disease, will produce hormone at whatever level that body needs on that day, some days producing more when the body needs it and less accordingly. The fact that we have no thyroid and are given one dose each day there are times when our bodies need more (or less) and that's not happening with us! She also talked to me about the whole T3 to T4 (or maybe the otherway around) conversion thing. The levoxyl is a hormone that feeds into a chain of reactions to make other hormones that eventually feed the cells chemicals to produce energy for us to live on. If any of those reactions or conversions are compromised then the ultimate result is we don't get our energy (or metabolism). She had recommended Armour, but for Thy Can patients it's not a reliable suppressent of TSH. So it's been recommended that I take Cytomel which has both T3 and T4, levoxyl only has one of them, can't remember which one. I'm going to make an appointment with my regular endo and try it...hope it works...I'll let you know!!
Best of luck and maybe you can talk to your endo about this too!
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HI Cat,
Thanks for sharing what you're going through...I too have had a total thyroidectomy and thought that after 2 years of my lab 'numbers' being in line with what my doc(s) want to see, I'd actually feel better. This is not the case! My neoplastic endo does not really want to hear about how I feel, he just looks at the numbers and scans (which have been clear for 2 years post-surgery now!)and basically dismisses me. Shortly after my last surgery to remove the 2nd 1/2 of the thyroid I complained, and cried, to him about my fatigue was effecting my life so negatively that he was surely missing something. He sent me for a sleep study thinking I had sleep apnea, I snore, which I did not, but was instead diagnosed with narcolepsy! I've been on narco meds to keep me awake during the day since and really can't function without them, but I truly think that the narco diagnosis was a mistake and that my fatigue is still due to hormone issues, specifically related to my thyroid, or lack of one!
I have gained almost twice my body weight beginning about 5 years prior to diagnosis, mostly with my 2 pregnancies but even before that. I had talked to my family doc about the fatigue and weight gain that started almost 10 years ago and how it effected every aspect of my life basically changing who I am. I was always active, into sports and worked out almost everyday running, lifting weights, aerobic classes, yoga...I worked and went to school and had a full social life and always had extra energy to spare...and could eat the world without gaining an ounce! As I started to decline I would complain to my family doc every so often over the years and he would run the obligatory TSH test that came back 'normal'...or so they said. I had always been just on the cusp of abnormal but still within normal range and no one ever thought to test further! Even when I had 3 cancerous thyroid tumors my TSH fell within formal normal ranges but still on the high side of 'normal'. It wasn't until a pituitary adenoma (a small tumor) was discovered and further tests were ran that an endo from Mass General saw the whole picture. My T4's and T3's and thryroglob's and blah biddy blah's were all off indicating Hashimoto's...and eventually the thyroid tumors were found, removed, and determined to be cancer.
So...here I am a few years later, tired, fat, depressed and on .175 mgs of levoxyl (like you), which is pretty high AND the narco drug Modafinil (which works on the hyopthalmuses inability to produce orexin (sp?) which keeps you wakeful during the day. - not an amphetimine - which might help with my weight!). I'm on a mega dose of the Modafinil and still crap out every day sometime between 11am and 1 pm. I try to cram lot's of caffeine into my body so I can get somethings done during the day, but that just makes me spacey and useless.
I see a naturopathic doc who explained to me that the thyroid, in tact and without disease, will produce hormone at whatever level that body needs on that day, some days producing more when the body needs it and less accordingly. The fact that we have no thyroid and are given one dose each day there are times when our bodies need more (or less) and that's not happening with us! She also talked to me about the whole T3 to T4 (or maybe the otherway around) conversion thing. The levoxyl is a hormone that feeds into a chain of reactions to make other hormones that eventually feed the cells chemicals to produce energy for us to live on. If any of those reactions or conversions are compromised then the ultimate result is we don't get our energy (or metabolism). She had recommended Armour, but for Thy Can patients it's not a reliable suppressent of TSH. So it's been recommended that I take Cytomel which has both T3 and T4, levoxyl only has one of them, can't remember which one. I'm going to make an appointment with my regular endo and try it...hope it works...I'll let you know!!
Best of luck and maybe you can talk to your endo about this too!
May 6, 2009 - 6:29amThis Comment
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