Hypothyroid swelling/Levothyroxine complaints

coburngirl2

So, like everyone else I've been dealing with a lot since my thyroidectomy. I had my surgery in August 2012. Mid summer 2 years ago I started having trouble breathing, horrible leg swelling, puffy hands and feet anytime I did any type of exercise. So, i stopped walking. My eating stayed the same (not good not bad) and I gained 20 lbs in 1 week. I went to the endo, who sent me to the cardiologist. Echocardiogram showed normal, all blood work was normal, so they put me on TWO water pills. I lost a pound or 2 here and there and then stabilized where I was at. Six months later during our move another 20 lb jump in a week. We were busy moving and had no time to eat, so I knew it wasn't fat weight, but fluid weight. March of this year, up another 10 lbs and time for blood work. Dr again gave me a refill of my water pills and had me get blood work, and scheduled appointments to cardiologist and endo again. My cholesterol was up (never has been before), blood glucose sugar was up (never has been before) and TSH which had always maintained 0 since surgery was 22.35. I finally got in to see cardiologist the middle of May. He took 1 look at me, 1 look at my records and said "your heart is fine, your thyroid medicine has stopped working. I'm increasing your dose AND putting you on name brand Synthroid, levothyroxine has stopped working for you, probably over a year ago." My dose has been increased since May 18th. I can't say I feel better yet, but I can say I don't feel worse. I had my endo appointment last week FINALLY, and may have found someone who has a clue. He said all that lab work was thrown off because I am "in severe hypothyroid myxedema crisis and am lucky to not be in a coma." He is upping my Synthroid again in a few weeks to stabilize me, and changed my "water pills" to Maxide, because the swelling I have isn't "fluid". You can google search the meaning of myxedema. The point of this long winded message is for anyone who may be going through the same thing. I can breathe again (started getting winded really easily), have less puffiness in hands and feet, which prompted me to start walking again in small doses, and my motivation which was fractured, seems to be healing as well I've lost 9 lbs in 6 days and I'm sure I'll see more results as this puffiness starts to come off even more.

MeepleMuppet

So had they not been checking your TSH levels prior to that? If the swelling was related to a failure in the medication, you'd think they would have seen an increase in the TSH....and then started testing for cancer reoccurance. Why blame the heart? That's so weird.

coburngirl2

they blame the heart because of a foul up after surgery. The radiologist put an catheter in my jugular vein and was supposed to wait for the chest x-ray before administering the calcium IV. Instead my heart took the full IV bag and put me in stage I congestive heart failure. Thanks dr

MeepleMuppet

Can you go to a different hospital for the next one?

WrenPat60

So sorry to hear of your recent troubles with your thyroid meds. I really hope you are doing better now.