[runlacie]

in reply to: Having RAI in 3 weeks…LOTS of Questions… #1067809

Hi, I had rai on 7/20 but never took ATD’s, so I’ll just write about what I know and how it went for me-

1. I was told by my endo that the radiologists tend to want you off of ATD’s for a longer than needed time. I studied a lot on the internet about the different dosage protocols and how long to be off of the ATD’s, but since I was never on them, I can’t really speak from experience. I did find out that sometimes your rai dose would be higher if you had taken ATD’s vs those that hadn’t. I found out I had Graves’ in early June and my tsh was, like yours, undetectable. I went almost 2 months with no meds other than an occassional beta blocker which I took very sparingly only every couple nights when my heart was really pounding and I couldn’t sleep. I even went on vacation out of the country during that time. I’m a runner and couldn’t run due to the high HR, but I did continue walking every day. Have you taken beta blockers? They are fine to take before and after rai and might help you to feel better while you are off of the PTU.

2. Just my experience so far- I’m 5’7 and weighed 134 before Graves’, which is actually pretty gaunt for my body type as I carry a lot of muscle and am large framed. When I got sick, I went down to about 130- lost a bunch of muscle and looked awful. I’m sorry to say this, but in two months after rai I gained 12 pounds, which puts me now at 142- a net gain of 8 pounds from pre-Graves’ weight. I believe part of that to be that I wasn’t able to run, previously had been running 50-70 miles per week, and was still HUNGRY, so I ate more than I should have- though nowhere near as much as I used to eat. The other thing is that I gained a lot of muscle and bulked up fast. I went hypo rather quickly, even with my "small" dose of 7.3 mci, and I think that also had a play in the rapid slowdown of my metabolism. Since I went on Levoxyl at the end of September I have managed to maintain my weight- it has NOT been easy. I eat 1400-1800 calories per day and track every bit and I am back to running 40+ miles per week plus lifting weights and doing core workouts Which brings us to-

4. I was able to jog a slow couple miles within about 2-3 weeks following the rai. I wear a heart rate monitor and was very careful to keep my heart rate under a number agreed upon with the doctor. My T3 and T4 were in the normal range by the time I had my 4 week bloodwork done, and at that point my doctor told me running hard was okay. I think I was one of the lucky ones that responded quickly to rai, everyone seems to have a different experience with how long achieving normal or hypo levels takes.

3. The hair thing- I lost more hair when I was hyper than when/after I had rai. I’m somewhat obsessive compulsive and would only empty my brush on Monday morning so I could see if my hair was falling out. And it hasn’t.

Overall, I’m happy I did this so far. I was a little frustrated at having to wait so long for my rai appointment as I wanted it over with ASAP, but I’m past that. I’m mad about the weight thing, but once they get my Levoxyl dosage correct, I have confidence I can lose what I have gained. It’s just a waiting game since even though I know my dose is still too low and I’m still hypo, they say it takes 6 weeks to give the full effect and won’t do labs and up the dose except for every 6 weeks.

Good Luck, and keep us posted!

[runlacie]

in reply to: RAI in two weeks… #1067854

Hi Nick! Ski gave you great info- esp about finding a doc who will work with you to find YOUR normal. I can tell you that I have had issues with heart palpitations and VERY BAD PVC’s all of my life. I never connected them with a thyroid problem since my levels were always in the normal range– BUT now as I look back at my medical records and my thyroid results, I can see that my pre-Graves tsh has ranged from 1.1 to 4.3– up and down like a yo-yo with no rhyme or reason over the past 17 years. My PVC’s have been bad enough that I have been hospitalized for observation and had every heart test under the sun only to be told my heart is fine and they have no idea why I got them. Every couple years the palpitations and pvc’s would rear their ugly head and send me into heart anxiety. Now, looking back, I’m sure my thyroid has been whacked from the start and MAY have played a part in the heart symptoms. I’m a runner (running actually helps my palpitations, go figure) and started noticing my HR increasing back in February. By early June I couldn’t run at all because my HR would skyrocket after just a few steps. Finally went to the doctor- tsh less than .0005 and then all the other tests said Graves’. I did the rai thinking it would be the quickest route to running again. Had 7.3 mci on 7/20 and am now hypo and taking 50 mcg Levo (which I don’t think is enough, but we are still working on that). I was not put in any lead type room- the technician sat right next to me and handed me my pill. I did not have much in the way of restrictions- I have a 7 y/o and was just told not to sit directly next to him (or anyone else) for extended periods of time during the first 2-3 days. Like it was okay to sit in the same room, just not right next to him on the couch. And it was okay to hug him, just don’t let him sit on my lap for a long time. It was okay to prepare meals as long as I washed my hands first (duh) and was careful not to spit in the food (double duh). Kick the DH out of the bed for 2 nights (and he ran for the spare room thinking I’d glow or something). And I hate to speak too soon but my PVC’s have been absent. Completely. Totally. Absent. Will I be cured from them? I guess I won’t know that yet, since they seemed to run in yearly cycles- but right now I’m pretty happy with the way things are going. And I can run again. I have been a little sad, weirdly sentimental, about killing my poor old thyroid– but I still think this was best for me. Best wishes to you… and keep us posted!

[runlacie]

in reply to: 2 weeks on levoxyl no change? #1068210

ewmb- geez, good thing you are informed and know what should be going on with your treatment, huh? Crazy. Well, I do hope the 50 makes you feel better. When do you get more labs? Keep me posted… we seem to be going through all of this together, huh?

Ski- thanks, as usual, for that info. I read about the meds and how it does take time to build up the T4, but didn’t know how long. Maybe there’s hope I might feel better before worse again then?? I am trying hard to wait it out at least another week or two before I start pestering the doc office again.

I’m only now in my second week (9 days, I think) of Levo. I do feel a big difference from before when I had to be scraped up off the couch and crawl up the stairs to bed. I’m pretty functional. And it’s better than hyper. Just stinks to be getting heavy and my legs feel like lead. I couldn’t wait to run and now I really have to force myself to go and I feel so blah, quite a change from bouncing off the walls to hugging them. One of my biggest fears was that I would be allergic to all the replacement meds, so it is a big relief to me that it seems like I’m going to be just fine as far as that goes.

[runlacie]

in reply to: 2 weeks on levoxyl no change? #1068207

ewmb- I’m okay, hanging in here. Heart rate came up nicely at first, but now every day it seems to be slowing more again. And I still have over a month to go before I see the doctor or have labs. I know I should be taking a larger dose, 50 just isn’t enough. This may be crazy sounding, but I still feel that weird sore throat I’ve been getting since RAI and it seems like every time I have that I feel a wee bit more hyper but then fall back down to even more hypo than before the sore throat. I swear I can feel the little guy just dying in there and giving off what’s left of my own thyroid hormones. It makes me kind of sad sometimes. I almost wish I wouldn’t have killed it since now I’m getting fat and there’s no turning back and my doctor won’t listen to me about more medicine. She promises to keep me more to the hyper side of normal once I’m regulated, she says that’s how she likes to keep her patients TSH levels- and I know this to be true since I found out my neighbor is also a patient of hers and the neighbor told me that’s how this doctor tries to keep hers- so I guess once I have finally found my way to "regulated" we can tweak this so I don’t stay sluggish and gaining. Uggh. It’s just getting there- more of the Graves’ PATIENCE needed!

Did you hear anything back yet???

[runlacie]

in reply to: 2 weeks on levoxyl no change? #1068205

Yeah, I definitely think an increase is in order. Maybe even more than 50mcg? Maybe you’ll get to go all the way to 75? My first official hypo TSH was 29 and I went to 50. I really think I ought to be on at least 75, though. If you’re doctor only puts you on 50, at least push for maybe getting your labs done a little sooner?? No wonder you’re still dragging, you need MORE ” title=”Smile” />. Good luck and I hope the phone call comes soon for you!

[runlacie]

in reply to: Well who would have thought – HyperM back at work :) #1067911

YAY for HyperM! We’re so proud of you and happy for you!!!! And guess what, EVERYTHING is tight on me!!! Today was our first chilly day and I had to pull out my jeans… they were loose in the spring and now I’m kind of just happy that they even still fit me! Keep in touch, okay???

[runlacie]

in reply to: Weigh-in (just for fun) #1068760

Hi Julie! It wasn’t until my second month that I really started having bad weight trouble. I was clinically in the "normal" range at my one month labs, but still felt slightly hyper. Soon after that, I had about one week where I felt GREAT, and then crashed at about week 6. Had more labs at 6 weeks, and still clinically "normal" but pushing the hypo end of it. I was feeling bad, gaining fast, and endo refused my request to begin meds. At my 2 month labs I was finally hypo (29 was my TSH) and finally got my meds. I feel better again, back to GREAT and this is only my 3rd day on Levo. I have lost a couple pounds in just the first few days- I’m sure it’s some of that puffy water, but whatever- I’ll take it! Great job to you on not gaining- it’s rough- and eating less than 1000 is a challenge. I felt hungry when I went hypo- like if I could just have food/sugar/carbs that it would give me the energy I was lacking. Wow, you will have to leave pretty early for that doc appt, huh? Keep us posted! ” title=”Smile” />

ewmb! Hey, glad to hear you’re doing well! And also that WW is working for you! I’m sitting here eating one of those WW Smart Ones for lunch- Chicken Parm w/a FF dressing salad. Chicken Parm is my fave, but they have some good ones. Not sure what to say about the vertigo??? You are still on 25 mcg? Or did you just up it?

I ran 8 this morning. My cold is finally about gone. Heart rate stayed just where it should. Finally. Now if I could just get my legs to feel good and move faster. I feel heavy on my feet- like I’m plodding- and not light like I used to. But I have incredible energy again. I actually stayed up later than DH last night for the first time in ages. I think I can cut back to just one pot of coffee per day now, haha.

[runlacie]

in reply to: Weigh-in (just for fun) #1068757

haha, mamabear, yeah- you’re a brat all rrrright! ” title=”Wink” />

hyperm – good to hear from you! the bloat stuff is awful, huh? I betcha lots of this weight is water, don’t you feel like it? My neighbor just had a total thyroidectomy- she’s had Hashi’s for years and now some oddball results on biopsies, so they just decided since her’s wasn’t doing anything may as well go ahead and take it out. She’s doing well, but then she’s used to replacement. I hope you get your labs and dosages straightened around soon!

I started 50 mcg Levo yesterday. My TSH was finally up- 29.something. I feel much happier and energized already. Weighed 143 this morning with time of month here, so I am very much thinking I can beat this thing and get it heading in the right direction now that I finally got my Levo-fix. I swear I was going to have to start bartering on the black market if that doctor wouldn’t prescribe it! My HR is back up around mid 40’s which is right where I should be. Feels so much better than 30, lol. Since yesterday started this new chapter in my life I have been trying to eat better. Plus I had a cold, so I have not felt so hungry.

I’m 9 pounds up over my normal weight, so I guess that’s not all that awful. I’m still nowhere near as fast as I was just a few months ago, so I’m not running in a race this weekend that I’d been hoping for. But I can see that my muscles are coming back- those poor muscles that disappeared overnight when I went hyper!

[runlacie]

in reply to: how do you get over the anger? #1068091

The only thing that I was really angry about was not being able to run. Life pretty much continued as usual. But since running was a big part of my life, that was tough.

I was actually happy when told I had Graves’- since I thought I was going crazy with this heartbeat thing. I remember saying to the doctor, "Oh, good! I’m not crazy!!! So, you’ll fix me up quick then, right???" haha, little did I understand at that point that NOTHING is QUICK with this disease. Anyways, all along I just kept being thankful that it was "ONLY" Graves’ cause after all, there are things that could be much, much, worse. And also was very thankful it was JUST ME and not one of my kids being sick. Mostly the parts that upset me the most are that I feel like things COULD have gone quicker- I could have had my RAI scheduled faster, the doctor could be more attentive to returning my calls, etc. I am now 2 months since RAI and had my third set of labs drawn yesterday- I expect to be hypo this time- but of course, the doctor has not returned my call today. So, I just keep going, cause after all- what else can we do???

Oh, and I had 7.3 mci and just wasn’t aloud to sleep with anyone for 2 or 3 nights. Have a 7 y.o. and didn’t have any restrictions other than to keep a bit of distance between us the first few days- like we could still hug, and be in the same room, I just shouldn’t sit next to him on the couch for hours on end.

Good luck. It does get better, I promise.

[runlacie]

in reply to: Weigh-in (just for fun) #1068754

grrr, this is bad here, too. I have been in the 142-145 range all week. uggh. Means I’ve gained almost 15 since rai. And I’m tracking everything daily~ 1500-2000 range and running 5-10 every day!!!! I feel the BLOAT, so I do think some is water. Sure hope I get to go on replacement next week, don’t know how much longer I can take this!!!!

I lost on Nutrisystem before. Been thinking about that again, but it is pricey and I really don’t feel like having to eat those little meals and still worry about what the rest of the family will eat. My eating habits really aren’t that bad. It’s just being hypo that’s doing this to me.

[runlacie]

in reply to: Yee HA! My levels are finally normal! #1068164

Yippee! Good for you! Salsa lessons sound fun, let us know!!!

[runlacie]

in reply to: Levoxyl, synthroid, generic, what do I do??? #1068186

Wow, thanks gang! I know I can always count on you all to help me figure this stuff out! Great info, extremely helpful!!! I guess since it sounds like brand is probably the way to go for consistency, I will just stick with what the doctor and I have pre-agreed upon, which was Levoxyl. Seems like a small difference to pay for knowing it will be the same always. I hope it works and I really hope I am hypo on my Monday labs so we can get things rolling! I’m still feeling more and more sluggy every day. urrrgh.

[runlacie]

in reply to: 2 weeks on levoxyl no change? #1068200

ewmb- just wanted to let you know I feel your pain! As Krystal so eloquently put it a couple weeks ago, we have now reached the "other dark side." I am still drinking pots of coffee but feel like I could just fall asleep at any given moment. Nights are scarey wondering if my heart will just decide to stop. Since I couldn’t coerce the doctor into starting me on replacement I decided if I feel bad enough I will have no choice but to just go to the ER. That ought to be good for at least freaking a couple people out with my HR of 35, lol. I only feel really bad when I sit or lay down and my HR drops, so I’ve been trying to keep myself busy.

Krystal- good to hear from you and I’m happy your labs were perfect! YAY!!!! The dark side doesn’t last forever, huh??? ” title=”Very Happy” />

[runlacie]

in reply to: went to new endo #1068238

Hey Deb! That new doc sounds great! I’m so glad you are feeling better! Please do keep us posted!!! ” title=”Very Happy” />

[runlacie]

in reply to: RAI #1068233

Hi mama! My endo just reminded me yesterday that Graves’ disease is an exercise in patience. I’m not patient, so it’s been rough. Sounds like you are that way, too. I would say that I gradually started feeling better somewhere around the 2 week mark. It wasn’t straight down, though- there were still some times that I felt very hyper. But a gradual downward trend- I actually tracked my heart rate- after that. Kind of like rolling hills down a roller coaster. Overall down, with some little ups in between. I had rai on 7/20 and my t3 and t4 were normal by 8/20. tsh still low. I am sure that I’m hypo now, but don’t have labs until Monday. I hope you will feel some differences soon- you’ll be all happy the first time you feel cold again! This board is great support and just hanging out here with my Graves’ family did a lot for my soul and making me feel better, so stick around and keep us posted, ok?

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