[Hopeful23]

#1069001

Lacie-Its only been three weeks… it took me two months and I had a monster dose of 14.6. Remember this happened to me. I thought I was hypo and was borderline hyper still. You A. Shouldnt be running B. You had a smaller dose so it could be your in dumping mode now. My dumping didnt happen till week 3.. I wouldnt get discouraged RAI doesnt work that fast if it did a lot of people would be in TS and I would have been one. It can take up to 6 months to take full effect. I know how anxious/nervous you are I was right were you are 2.5 months ago. Continue to chart your pulse and symptoms for DARASTIC change and call your endo with any uncertainty. When that happened to me i was hypo my next test results.. stay strong and STOP RUNNING. YOU NEED TO HEAL DARLING LACIE…..

[runlacie]

#1019068

Hi GD friends! I’m getting upset here and I need help. Tomorrow will be 3 weeks since my RAI. I *thought* I was doing great after RAI- no major side effects and I was slowly improving. I track my heart rate obsessively. Have a monitor and do a 3 mile walk everyday PLUS I wear it while I work and keep an average heart rate on a graph of both of these things. Anyways, it was all good- my heart rate was dropping and I was feeling better. I even felt well enough to start running a bit last week. The racing heart before bed was gone and I was actually COLD sometimes. I really thought I was heading to normal and hypo land. Then beginning yesterday things start going downhill fast. Pulse is way up again- nearing my pre-rai levels and I feel much worse. I really thought the die off symptoms would be sooner than 3 weeks and can’t seem to convince myself that maybe it is just the cells dying causing these increasing symptoms. I think the radiologist said to watch after around 3-5 days for die-off, but he didn’t say how long that time frame was open. I’m scared the rai didn’t work and my thyroid is winning- I only got 7.3 millicuries. It stinks cause a couple days ago I felt so great that I actually cried tears of joy and now it is coming back. I read back on some posts and it does sound like many go hypo right away and others do not- but people seem to come and go on here and it is hard to find follow-up for the ones who struggled- hopefully that means they got better and just quit posting. SO, what do you know??? How long for die off? Is 3 weeks in range or are the sudden hyper symptoms at this point due more likely due to treatment failure?

[ewmb]

#1069002

Lacie,
I seemed to have two real die off periods during this time since my RAI on May 8th. I don’t think that three weeks to out of range for this to happen. I too felt so much better three weeks out and my tsh was actually up then. Then I started to feel bad again and it crashed three weeks after that and then was undetectible about three weeks ago. You do need to remember that you are sick right now and you need to give yourself rest periods in the day and Krystal is right the running is probably not so helpful right now. I would call your endo and ask if you can come in this week and get blood work done so you can find out. When I was taking ATDs I could never guess my levels from how I felt.

It is very disheartening to go back to feeling so bad. I have cried many tears since May. I too am wondering if I had a large enough dose for me to have the desired effects. My endo says 6 months is the time I’ll have to wait to see if it worked.

I really had never thought about what Ellen wrote on one of her posts about the pituitary having to get used to working again to send out a signal to make TSH.

Keep chugging along, slowly, and let us know if you get some labs done.

ewmb

[npatterson]

#1069003

Lacie,

It does take longer than three weeks. No one is going to be thinking about doing anything different for at least six months. If your pulse is really getting out of hand, then your doctor will prescribe something to help yor heart not have to work so hard (one of the beta-blockers). You need to ASK, and this is a time that your graphs will be very useful.

Ask your doctor about the twenty-plus miles you are walking right now. That sounds like it would be really hard on your muscles, heart and breathing. Think about it, and give yourself a chance to recover and heal. Others are giving you that advice as well.

Take care,

[runlacie]

#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.

[ewmb]

#1069005

runlacie,
Glad to know that your doctor says it’s ok to do some exercise but on the other hand I’d still take it a little easier on the days you feel bad. Nothing with this disease is fast and easy it seems. I already had another chronic illness before I got Graves so I had more of a grieving period with the first one. It can be hard to get used to the fact that your body isn’t the same as it was and never will be exactly as it used to be even though we will feel a lot better someday.

Hope you feel better tomorrow.

ewmb

[runlacie]

#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” />

[RhondaG4]

#1069007

Run,
Yep I can relate. I had my RAI at the end of April and I had 19 Milc…and my recent bloodwork shows me more hyper now then I ever was before. Hoping that the thyroid is dying off and that is why it is so high and hoping I’m having the dumping thing going on. With me it’s hard to tell. I only wish I could walk as much as you do, that would be awesome. I’m learning quick that nothing with Graves is fast. Now that I have a Lupus Dx also, I too have the " if I only would have" thing going on. Not that surgery would have been a better, quicker option, but maybe I wouldn’t be sitting here wondering if the RAI worked….I know ya know what I mean!!!!

Hope things get better for you soon. Take care, Hugs Rhonda

[runlacie]

#1069008

Well, after the hyper symptoms worsening for 2 days, now I think I’m going back down. Wonder if it will be straight down or more of this (not so)happy-go-(not so)lucky roller coaster ride. Saw 49 on the pulse, but mostly it’s hanging around 54. The best news is that when I stand up I am no longer getting a big spike- it was going from 60 to 90 just from sitting to 2 min standing. Now I’m seeing 54 and up to 64 when I stand for 2 minutes. Much better. Wow, and I kinda feel like I could actually take a nap. lol- or, go run and see what happens. I jumped up and down like a mad woman, just to see, and my DS who is 7 said- that’s my Mom, she’s crazy. ” title=”Wink” />

[elf]

#1069009

My worst (die-off) time came 3 months after RAI… I actually hadn’t felt too bad before that. Right after RAI you are on the half of your pre-RAI PTU dose, right?? I don’t remember for how long I was on the half-dose, a few weeks. Then wasn’t taking anything, and my tests were within norms.

3 months after, increased anxiety, slight hand trembling, more watery eyes… Then I knew that was the last ditch effort of my thyroid. It was over in a week.

Turned hypo still 2 months after that, that is, 5 months after RAI.

Graves is a disease that requires a lot of waiting. I did OD on one eye a month ago and came here 4 days after my OD, asking just when my eye would go in. Waiting still.

[runlacie]

#1069010

Hi elf! I never took PTU or any ATD’s. I’m just over 3 weeks out and do feel overall better- but I did have that little time where I got worse for a few days. And my throat was hurting me. The throat thing is improving and I can feel my neck is different (less full?)- I really think the soreness was related to the little bugger frying in there. I can tell that I am still hyper, but definitely not as bad as I was. Yes, it seems we are always waiting for something with this.

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