[runlacie]

in reply to: RAI sore throat? #1068932

Hi Amy! I’m sorry about you having to seclude yourself. That must be tough with a one year old. I can relate to the hand over your throat feeling, too. I felt better in my second week and then worse now in the third. Hoping that is a good sign, but not sure what will happen next with this crazy disease. How did you find out that you have Graves’? Hang in there, it has to get better. ” title=”Smile” />

[runlacie]

in reply to: Newly diagnosed & have questions please #1069155

Hi Jessica! There is lots of info about RAI right here on this board. Many of us have been through it. Tomorrow will be 3 weeks for me since RAI and it was just a tiny pill that I swallowed. Nothing hurt. Except I’ve had a bit of a sore throat the past few days- could be allergies or related to the RAI, I don’t know for sure. Time to recovery is different for everyone, but I have heard that you don’t start feeling a change for the better for 2-6 weeks and that it takes time, even after that, to be completely well again. I do feel somewhat better since my RAI, but still having up and down days. RAI is usually successful on the first time, but some people do end up needing a second treatment. Being cured usually means you end up hypothyroid and have to take daily replacement pill. Yes, you will be able to have more children, you’ll need to ask your doctor how long, but I think the paper I got from my radiologist says not to become pregnant for at least 6 months after RAI. Is the medication they put you on a beta blocker? (the names of them usually end in lol- like propranolol, nadolol, atenolol, etc). Those are very commonly used for people with Graves’ to help control the symptoms and protect the heart while we are hyper and awaiting a more permanent treatment. It’s hard not to be scared, but really, this is a very treatable thing to have and you will eventually be okay. Do what you can but don’t be hard on yourself for things you just can’t get done at home. The one thing I have found very difficult with this disease is you have to be patient. I’m not good at that, but try and just kick back, stay positive and do the waiting as best as I can. Feel free to ask any questions, the folks here are a wealth of info. Take care!

Gayle- great news from the doc today! I know what you mean about the surreality of it all. I really didn’t have major symptoms either and still can’t believe this has happened to me! I haven’t been tired at all with this, I actually feel like I have tons of energy- but I sleep like a rock- so I guess that’s kind of backwards to what others experience. And I never slept well before this, now all of a sudden I do. Plus I have IBS diarrhea, but dontcha know the Graves’ makes me constipated! Backwards and lol, TMI for sure!

[runlacie]

in reply to: RAI time frame for worsening from die off? #1069006

I have high hopes that no, my body won’t be exactly the same, it’s going to be better. Just a little set-back, right? ” title=”Cool” />

[runlacie]

in reply to: Worried – low heart rate #1068993

Hey hyperm, that is good news from the doc office about the heart rate for you. Hope that you now have more reassurance that you are okay. Don’t worry you bore us- that’s what we are here for, to listen and maybe help some. No, my HR isn’t normally in the 30’s, that’s just what I’m afraid of happening when I’m hypo. Normal was 45ish before this. But even before I was a runner it was in the high-50’s. I have quizzed my cardiologist at length about it and he is totally unconcerned. Feel better and get some rest, okay? ” title=”Smile” /> ” title=”Very Happy” />

ewmb, I’ve been yawning! ” title=”Wink” />

[runlacie]

in reply to: RAI time frame for worsening from die off? #1069004

My doctor told me it was okay for me to jog, walk, and do core exercises providing I kept my HR down. I’ve been at about 35 miles per week (I do more than the 3 miles per day- but it’s the first 3 that I keep track of for my graph), and while I was totally hyper it was all walking. But when this disease struck me I was running over 60 per week and had just run a marathon. So, even though it might sound excessive- it’s not nearly what my body was used to doing and my doctor is aware of all that. I am very careful, always wearing my monitor. I am quite sure I would totally lose my mind if I couldn’t go outside and walk- it has been my saving grace the past two months. At the worst of hyper- my avg HR was about 116 walking 3 miles @ 15:00 per mile. Following RAI, it showed a gradual decrease until a couple days ago when it was down to 96- a 20 bpm improvement. And now with this increase the past couple days it was back up to 102. This change is not dramatic, but it is a trend in the wrong direction these past few days. And my resting heart rate had fallen to 52- now it’s back to about 56. So, I was seeing myself going backwards and just looking for some reassurance that it really could be dumping from die-off at this point. Thanks ewmb and Krystal, from the responses, sounds like that could surely be the case. I tapered off the beta blocker (10mg per day propranolol) once my resting was back under 60 and I know the doctor won’t put me back on them at this point as he hesitated to give me them in the first place because of my low heart rate (which is normal for me). I am just frustrated, I chose RAI because I thought it would be fast and easy. And then I spent a few weeks wasting time waiting for the scheduling of the RAI which still makes me angry. Now I feel like maybe another option would have been faster. I know, patience. I just have a hard time sitting here watching my muscles turn to jelly. Especially when if they could have got their stuff together and done the RAI quicker, I’d be 3 weeks ahead of here.

[runlacie]

in reply to: Worried – low heart rate #1068989

Hi hyperm! Congrats, sounds like you are going hypo. Are you on replacement yet? If it is a change from what is normal for you than it’s worth a call to the doc to ask. I remember just a couple weeks ago Hopeful was having the same worries cause hers was on the low side- and that’s when she went hypo. If it makes you feel any better, mine sitting here right now while still hyper is in the 50’s, my normal is mid 40’s and I am pretty concerned about what going hypo is going to do to me- like will it go into the 30’s and just stop when I’m sleeping or something??? I don’t really understand why being hyper and hypo have this effect on the heart- I mean, I get that too much thyroid makes your heart beat faster, but if that is the case then it should also make us run faster, when in fact it does just the opposite. Where does that energy go that your heart produces with all that beating? Oh, and I don’t know if you are on beta blockers, but if you are it’s probably time to taper off with directions from the doctor. Keep us posted on what you find out- and I’m glad you are feeling better going out and being active and all. Don’t be scared, it will be okay.

[runlacie]

in reply to: More Hyper 3 months post RAI #1069020

Thanks Cathy! That is good news!

[runlacie]

in reply to: More Hyper 3 months post RAI #1069018

I was just thinking of starting a new thread about this but here is this one! I’m only 3 weeks post, but I was feeling great- almost normal- and then there’s times (like now) that I’m nearly back at square one. I do keep track of my heart rate, so I have solid evidence of this craziness. I was wondering if it is normal to go up and down during the first couple months. The ups and downs seem quick- like I am okay for a couple hours, my pulse is almost normal, I can run- and then BAM – it all comes back. I’m sure hoping it’s just the little buggers in there frying and sending out a last ditch surge! Oh, and I notice that my throat hurts when these hyper stages are occurring, so now I also am curious if that is also related? Or allergies, maybe.

Take care Rhonda and ewmb- let’s hope it’s their last stand!

[runlacie]

in reply to: Hi, everyone! I’m the new facilitator. #1069062

Hi Ellen! Many congratulations on your new position! We’re very fortunate to have someone with your experience as the facilitator! Thanks for joining us ” title=”Very Happy” /> !

[runlacie]

in reply to: Newly diagnosed & have questions please #1069151

Karen, I have had PVC’s my whole life and been to the hospital with PVC’s before, too. Not fun. I had them so bad for several months that they were every other beat (bigeminy) for hours on end. This was about two years before GD. Anyways, maybe even way back then my thyroid was wacked, who knows? But I found this awesome cardiologist who made me better by telling me that they are harmless (as long as nothing else is wrong with your heart) and they can’t hurt me. I still get them once in a while, but not bad anymore. I hope that you have been able to find some reassurance that you are okay and they won’t hurt you.

Gayle, I sure hope my hair doesn’t fall out! I did notice that when I was going normal to hyper that I was losing more hair than usual. But then as I stayed hyper it stopped. And now I’m on my way back down to hypo and it seems to be staying in there. One of the things I did was only pull the hair out of my brush on Mondays so I could see how much built up during a week. Not very scientific, but I can see that the hair loss has definitely slowed down. I am 17 days out from rai.

[runlacie]

in reply to: 2 weeks post RAI my update #1069185

Hey James, thanks! Gail Devers is my hero and her story gives me hope. I actually found her website at the same time as I found this one when I googled Graves’ and running. I looked for an address for her because I wanted to write and tell her that her story gave me courage, but I was never able to find a good email or address. It appeared that her website hadn’t been updated in a few years. She had rai and came back to win gold. I won’t ever come close to that, but I will qualify for Boston- maybe next year? ” title=”Cool” />

[runlacie]

in reply to: will the tremors EVER go away for good? #1069074

Emily, Congrats on feeling better! For me, the tremors were one of the first things to disappear. But as others have said, I still get them if I am upset or nervous. Mine were so bad I could hardly write sometimes.

[runlacie]

in reply to: 2 weeks post RAI my update #1069183

Good deal on the heart rate, ewmb! You will get back to doing stuff again. Me, too. My patience is running thin, though. I can’t believe the whole summer is almost over and I’m still not better. When I first went to the doctor I figured whatever was wrong with me making my heart rate fly there would be an easy and fast fix. It’s been easy, just not fast. I had big plans to win my age group in the local races this year and now there is no way I can be in that kind of shape again until at least next spring. I should be happy because overall I have felt pretty okay. I’ve been able to continue working and doing most everything I did before. I just can’t run. But running was my life. Everything else revolved around it. I guess there’s a lesson for me here to be learned and I will try to take it with me when I’m better.

[runlacie]

in reply to: 2 weeks post RAI my update #1069181

Geez, that stinks about the itching! Are you any better today? I had resistant hives for several months and the only thing that would help at all was Zyrtec. And I’d paint myself pink with calamine lotion. I read on another thread about your office, that a bummer. But your heart rate was down again before??? Progress, YAY! I’m sure it just went crazy cause of your emotions and it will go back again. What a wacky ride we are on, huh? I like adventures but this is a bit much even for me.

Forgot to mention a couple other good changes- I am actually cool sometimes instead of burning hot. Was walking around the mall today and I had goose bumps I was cold- I haven’t had goose bumps in months. I actually high-fived the DH over the goose-bumps and being cold! People kinda looked at me funny when I jumped up and down and said yeehaw, I’m cold and I have goose bumps, but oh well! I can sleep with the sheet again! And my heart has quit racing when I go to bed. It’s a slow trip back but I think I’m on the right road.

[runlacie]

in reply to: Hyperthyroid due to Grave’s Disease or not? #1069110

What additional testing do they mean? The antibody blood test? That should be relatively inexpensive and if it is positive you would know for sure, but you can have Graves’ and still have a neg antibody result (I think around 90% Graves’ have positive ab’s). You say you have had the uptake scan- I’d think that would be more expensive than the antibody test. But if you had the scan and it showed an increased uptake and your gland looked like it took up the iodine equally throughout (homogeneous and uniform is what mine says) PLUS you have the eye involvement, that should be enough for a diagnosis. But not sure why they wouldn’t just go ahead with the antibody test anyways?

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