[amosmcd]

in reply to: Hello again, and another post-TT update #1180529

hi, Raspberry, Sue and Kimberly!

I’m feeling better on the 50mcg. I did have to start cutting back on the Atenolol because I was getting a little dizzy when standing up and my BP was getting too low. (84/50). So I’m on 12.5mg of Atenolol at night only. Still not feeling a ton of energy, but the palpitations are better. I get my labs drawn on Monday. I’ve always understood that dosing should not be based on TSH, but I was having problems and my FT 3 & FT 4 had not significantly changed since before surgery. I was feeling great before surgery. Only my TSH has been changing. So my endo is trying I think to treat the symptoms rather than the numbers. I was really hard to control on ATDs, lots of swings up and down for months before I finally settled down. Now it’s like I’m starting that whole process over. Very frustrating. I feel like I’m driving some of the changes by advocating for myself when I’m feeling crappy. I would hope my endo would over-rule me if she felt I was being incorrect, but she’s open to my input. I see her on the 27th of Sept but hopefully if my labs are whacky still and I’m still not feeling good, she will talk to me on the phone before that.

I’ve been on 4 doses of Levo since surgery. started at 100mcg post-op. Was hyper on that, so dropped to 75mcg. On that the longest and felt bad at that dose, so I was upped to 88mcg, which gave me major anxiety, palpitations and elevated HR. The on-call doc dropped me to 50mcg and it was decided Ill stay on that until my next lab results. I’m not thrilled with the huge drops of 25mcg at a time, and I will talk about that. It was understandable this last time when I felt so bad, but now wonder if going from 100mcg to 88mcg would have been easier. It’s hard to second guess this now. I have a hunch I might be one of those patients who needs to alternate dosages on different days.

I am so happy that you all care enough to worry about me. It’s made me feel so much less alone going through this.

Amy

[amosmcd]

in reply to: Hello again, and another post-TT update #1180523

Well, my energy level has dropped again, starting Thursday. Now back to feeling sluggish. Not feeling too anxious–I think the Atenolol has helped with that. Yesterday I went into the city with my son and we didn’t get there until almost 3pm because I was moving so slow. Lasted about 3 hours. I felt really wiped and it seemed like everything was kind of glowy. Not sure why that was. I’m starting to cut back on the Atenolol. I was up to 37.5mg a day, now going back to 25mg to see what happens. Maybe with the drop in Levothyroxine I don’t need as much, and that’s why I’m feeling sluggish. It’s all a guessing game.

I did go for a 2 mile walk yesterday with my son after we got home, just to feel like I did something useful. Started falling asleep in my recliner at 9pm, went to bed, and then couldn’t fall asleep until after midnight. Didn’t get out of bed until 12:30pm. I do not call this living life. It’s pathetic.

I am just trying to hang in there until things get smoothed out. Which I know won’t happen for weeks if not months. Okay, enough whining. It’s 2:30pm, and I need to get dressed and do something.

Amy

[amosmcd]

in reply to: Sue’s TT – Part 2 #1180647

Hi, Sue–

I get more irritable when I get hyper, but everyone’s different. And I’m hardly a case study for typical post-TT reactions–lol! I hope you get some answers from the labs and after talking with your endo.

Patience is over-rated. I think a good scream and crying helps more than trying for Zen moments, when your thyroid levels are not yet stable. 😆

Hang in there!

Amy

[amosmcd]

in reply to: TT 8/8 #1180564

Great to hear all went well and you’re home now! Enjoy being pampered and getting a lot of rest. Keep us posted on how you’re doing.

Amy

[amosmcd]

in reply to: Hello again, and another post-TT update #1180522

Hi, Sue–
I used to work for a medical insurance company way back in the early 80’s, so I know how picky they can be. I also don’t get intimidated by them denying stuff. So that’s why I’m shrugging this off so easily. I thought that if the doc okayed it, they would allow it, but guess not. I think if this had happened last week I would have blown a gasket!! Thanks for being angry for me!

I got a lot of yard work done. Need to water my potted plants but tired now. But I gotta do it. It won’t take long. Hopefully wearing myself out will help me sleep tonight!

I hope my energy stays up there til this weekend–I have more stuff to do in the garden.

Amy

[amosmcd]

in reply to: Hello again, and another post-TT update #1180520

Well, good news is my energy level is up. I think the Atenolol is helping keep my heart from going crazy, which has given me a boost in energy. I’ve been taking between 25 and 37.5 mg a day. Tiday’s my day off and I’ve been running around doing errands and now going to work out in the yard. Last night didnt sleep well, but I seem okay.

My insurance denied the IV iron infusions, saying there could be other reasons for my lack of energy. I’m not going to fight them right now. If my thyroid labs ever stabilize and I’m still tired, I’ll look into it more.

Just having a couple days this week where I’ve had energy makes me feel a lot happier, so I’ll just go with the flow for now.

[amosmcd]

in reply to: Hello again, and another post-TT update #1180518

Thank you all for your support! It’s been so nice to not go through this alone. I wish I had not waited so long to get back on the forum! You guys rock–seriously!

So I got my labs back:

TSH 0.823 (0.34-5.60)
FT3 3.1 (2.2-4.3)
FT4 0.88 (0.57-1.25)

So this explains the increasing heart palpitations since they upped me to 88mcg. I sure do swing fast and hard. No wonder I’m miserable!!

I am actually starting to feel better since yesterday. No sure if it’s the Atenolol or the 50mcg dose of Levo. Right now I don’t care. I have energy and I’m not sleepy. I slept pretty well last night. Only woke up about 6 times instead of every hour!

I spoke to the actual nurse (not the medical assistant) and she was sooooo much nicer and compassionate!! My instructions are to get my labs drawn again in 3 weeks, stay on the Atenolol and 50mcg of Levo. She does agree 50mcg is a very low dose, but right now I’m up for whatever it takes to get rid of the palpitations and elevated heart rate and ANXIETY! I’m sure I’m going to be the patient that is hard to keep stable. She did say it’s hard for most patients to stay on the same dose long term, it usually gets tweaked, but not this often.

At this point the cardiologist is off the table, since the labs had changed. I’d rather wait. It seems like I spend all my free time taking either myself, or my oldest son, to doctors.

I’m not ready to get a second opinion yet. I fired my previous endo because he refused to give me the name of a surgeon when I wanted a TT over RAI. I had been with him for 3 years or so. This one, it’s only been maybe 6 months. So I’m willing to give it more time.

Thanks again for being my cheerleading squad! I appreciate all the not-spoken swear words! LOL!! I’ve been using some choice ones myself!

I see some new posts on some of the post-TT journals. I have to run, but will check those and post to them soon.

Love you guys!

Amy

[amosmcd]

in reply to: Hello again, and another post-TT update #1180513

Okay, I heard back from the endo’s nurse. I’m to get my labs drawn today and in the meanwhile, stay on the 50mcg of Levo the on-call endo put me on. I’m to take 25mg of Atenolol a day. They’ll get back with me on the labs, and if the labs (I’m assuming the TSH) is still high, they want me to see a cardiologist. Which kinda blew me away. I’ve never had heart issues until I got Graves’. My labs aren’t stable yet, so I don’t know if they are dismissing the dosage issue or what?

I took today off, will run in and get the labs drawn and they said they’ll have the results tomorrow.

I don’t know what I was expecting, but maybe a little more empathy? I feel like they think I’m nuts, but I’m probably just feeling too sensitive right now.

I’ll let you know what the results and next plan is.

Thanks Karen and Sue!

Amy

[amosmcd]

in reply to: Sue’s TT – July 16, 2013 #1180388

That’s great you have that type of work relationship, Sue! I work for a hospital and these days they’re run more like corporations. My boss would probably love to fire people for being sick. My assistant boss is much more understanding at least! She’s the one I talk to. It’s nice to have job protection out there. Glad you don’t have to worry about that!

Amy

[amosmcd]

in reply to: Sue’s TT – July 16, 2013 #1180386

Hi, Sue–

If you work for a large enough company and work enough hours in a year, you can qualify for 12 weeks a year of FMLA leave (Family and Medical Leave Act). It’s a federal law. Some states gave their own versions as well. It’s a way to protect your job while out sick for a qualifying condition (thyroid stuff is qualifying.). You can take it in chunks (like for post -op recovery) or intermittently (a day here or there.) I would Google it and see if it’s something you can get. You have to use either vacation or sick leave (your choice which gets used first) and then if you run out, it’s unpaid.

I’ve already talked to my boss about it and she said I should go for intermittent. Not all bosses are nice about it, but they can’t do a thing to interfere, and they are not allowed to ask the medical reason, either. It’s a great thing to have. I hope you can get it. Let me know!

Amy

[amosmcd]

in reply to: Hello again, and another post-TT update #1180510

Okay, just spoke to the on-call doc. I was a weepy mess when talking to her, so I’m sure she thinks I’m nuts. She was nice, though. She is recommending taking just 50mcg of Levo until Monday when I can talk to my regular endo. She said that will take care of the HR and palpitations. So, I just took it. We’ll see how it goes. She said it can take time to find the right dosage. It may need to be a combo of mixed dosages. I’m glad I called. She also said the elevated TSH can be from not taking the Levo at the same time of day or on an empty stomach. I did have to change when I took it while camping for 11days in June/early July because I was getting up at 8 or 9 am instead of 11am or noon. I’ll bring that up with the endo.

So I’ll update again after I talk to my regular endo on Monday. Going to go out and enjoy the party this evening and let myself get distracted from all this.

Thanks again for putting up with me.

Amy

[amosmcd]

in reply to: Hello again, and another post-TT update #1180509

Hi, Sue and Karen–it’s been 9 days since the dose increase and the HR and palpitations are getting worse. I just woke up and feel okay. Haven’t taken the Levo yet. I guess I’m just feeling desperate. I’ll call the on-call doc and see what they say.

I don’t understand why my Free t3/4 is staying the same, but my TSH is going up. I seem to be converting T3 fine, they are basically the same since surgery. I’m an enigma wrapped up in a conundrum.

I haven’t felt this bad since starting the Methimizole last Sept. Finally switched to PTU and felt a lot better, but what the hell now? I’ve been on Levo before, around 4 years ago when I was feeling hypo. I tolerated it fine then. So expected I would now.

Wondering what taking out the thyroid does to all the little ways it controls the body. Ther’s got to be more to it than just the measurable stuff. I’ll let you know what the doc says.

Thanks for being here for me.

Hugs and love, Amy

[amosmcd]

in reply to: Sue’s TT – July 16, 2013 #1180384

Hi, Sue–that’s GREAT news! I’m glad it was short-lived and you went on to get things accomplished. Woo-hoo!!

My calcium was never an issue, either. Glad you’re almost done with the calcium supplements.

I hope you don’t have a crash. Maybe we all don’t have to have them. But forewarned is forearmed I guess!

I may end up taking more time off work to get more rest. I can apply for intermittent leave, rather than a bunch or time in a row. It would be nice to give in to the fatigue now and like you said, rather than slog through it.

I hope the rest of your time off goes well!

Amy

[amosmcd]

in reply to: Hello again, and another post-TT update #1180506

Hi, Kimberly,

My insurance requires pre authorization for iron transfusions, so it might take a few days to get that after Monday. The infusions only take around 5 minutes. He told me what type but I can’t remember. It’s the least likely to cause an allergic reaction.

Anyway, I’ll let you know how it goes once I start.

Amy

[amosmcd]

in reply to: Hello again, and another post-TT update #1180505

Sue, your reply made me cry! Which is a good thing!! And it made me laugh, especially about the part of wanting the doc to find something, but not really–my feelings exactly! So I’m both relieved and annoyed.

At the moment I’m laying in bed, my heart rate is 100–just because I ate 2 choc chip cookies a couple hours ago. At least that makes the most senses. Also, having palpitations. I just took some Atenolol, so that should knock it down. I’m thinking this is too high an increase of the Levothyroxine. I have a party to go to tomorrow so I’m going to skip my Levo dose tomorrow. I’m tired of feeling like this. I’m calling the endo on Monday. I don’t think adding T3 would be good at this point. I don’t know. My endo wants to wait before trying it.

I’ll keep you updated.

Thanks again, Sue!

Amy

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