[runlacie]

in reply to: Feel like I’m going nuts….advice please #1062393

Hi Blue,

I feel a lot like you do. Had rai in July 2009. I did slowly go hyper but had wicked ups and downs and even though I am on replacement (though not a full dose, so my thyroid still must have some function) I still have them. It’s feels like either my thyroid is slowly dying and releasing extra hormones as it dies, or else whatever damaged tissue remains acts erratically. The anxiety is terrible and makes it hard to figure out what is real and imagined as far as symptoms go. I just don’t feel "even" and often wonder if my thyroid were just removed totally if that would help. There have been short periods of weeks to a month where I did feel "better" and didn’t have the hyper feelings as much. My anxiety would almost disappear during those times, so I definitely think it’s all related.

I also suffer from the gastro problems. Had some testing done even before the Graves’ and they said it was ibs. The anxiety makes it all the worse.

I hope that the zoloft helps you feel better. You’re not alone here. Keep me posted.
Heidi

[runlacie]

in reply to: The Rollercoaster. I think my thyroid is posessed. #1062288

Hi Shirley, thanks for writing and I appreciate the info on Hashi’s and Graves’. I wish I had known more before rushing into RAI. I just wanted to be better asap and thought that was my best choice. I guess what I’d like to learn by more frequent testing is that I’m not crazy and the ups and downs in my levels really do exist. I know I’m not imagining all this but maybe it’s not my thyroid.

paleblue, YAY another runner ” title=”Smile” /> Your info on changing your exercises is interesting. I really do think that when I keep my mileage and my dosage steady that I don’t get the ups and downs as much. And I swear that when I race or run hard that I get a little sore throat after and then get the hyper feelings for a few days. How long have you had Graves’?

Well, I’ve been good and I’ve been taking my upped dosage. I felt pretty okay until today and now feel all hyper with a higher HR running. My resting HR stays low but when I stand up, instead of my usual standing HR.. that’s where I notice some elevation.

Possibly some bad news (or another piece to my puzzle) is that I just got some bloodwork back, my elbow joints hurt me and I went to the GP about it. He did a bunch of bloodwork one of them, the ANA came back positive. RA was neg, and my CRP and ESR were both fine. So, I’m wondering if an elevated ANA could be due just to the Graves’/Hashis. I read on the internet that it could, but the nurse said no. I go back to the GP tomorrow if they can get me in, or if not on Thurs. so probably more info and more tests then. I just hope it isn’t Lupus or some other autoimmune thing. If anyone knows about or has had pos ANA, please tell me what you know… thanks!

[runlacie]

in reply to: The Rollercoaster. I think my thyroid is posessed. #1062285

Blue – thanks for your response. It sounds like you feel some of the very same things that I feel. I need to find an answer as I’m slowly losing my mind over this. If I had to choose again, I would definitely not choose RAI. My dosage was too small, only 5.4 mci if I remember correctly, to kill it completely and now I’m left with this demon. If I had to do it again I would go with surgical removal. I think my next move is to convince my endo or a new endo to remove it.

Bobbi – thanks…Yes, I try hard not to mess with my meds. My endo called Friday and bumped me back up to 88 every day (due to the 4.79 tsh) and I’m not pleased about it. But I’m going to try and if I still feel bad I guess I will just keep whining to her. I should have mentioned that I have been under cardiologist care for many years due to PVC’s and been completely checked out. He knows my history and that I run a lot. He also says he agrees that too much thyroid hormone will give me the symptoms I described earlier with the quicker HR peaking and slower recovery. I guess what I’m looking for is what can be done about it? Is removing my thyroid surgically what I need to do? Is it possible to test my thyroid levels more frequently so this roller coaster could be observed? and how can I convince them to do that? Shouldn’t levels stay somewhat even and if they for instance were to test me every few days could that maybe show what’s going on?

I also wonder if perhaps running plays some part in it all. I run 60+ miles per week and sometimes race. I notice an increase in the hyper symptoms after racing and after long runs. Since the body naturally releases thyroid hormones when you run (or at least I think that it does) maybe running is causing my poor damaged thyroid to try to do it’s job and it goes haywire? I have thought about and tried to convince myself that I should just quit for a month and see what happens. But I continue to lace up my shoes (sometimes in tears) and head out the door.

One other note is that I also have Hashimoto antibodies. This was discovered long before I got Graves’… the doctor waitied for me to go hypo, but SURPRISE… I got Graves’ instead!

[runlacie]

in reply to: If you had RAI #1062901

I had RAI 7/20/09. I can’t remember how many millicuries exactly but it was between 5 and 7 somewhere. My uptake was around 80%. It took about 6 weeks to start feeling normal, my 6 week numbers were better but at that time tsh had just barely started to move. It took about 4 months to go hypo. Even now, 18 months later, I still feel hyper sometimes.

[runlacie]

in reply to: Hyperthyroidism and the Boston marathon #1063756

Congratulations on your BQ! I’m sorry to hear that the Graves’ got in the way of you registering. I’m also a runner and if there’s one thing I’ve learned about Graves’, it’s that it’s a test of patience (and I’m terrible at it). I unknowingly ran my first marathon with Graves’, I thought my heart rate monitor was malfunctioning. Soon after the marathon I was unable to run at all. Not even a block. Found out I had Graves’ and had RAI in July 2009. I walked the whole time I was "hyper" because the Dr. said not to get my HR up too high. Also did a lot of core exercises. I’m not sure if the walking and core work helped me keep some muscle or not, but it kept me from going completely bonkers. Anyways, I was back to running a few months later. I set PR’s this year in distances from 5k to marathon. I just wanted to share this with you because you will get it all back, too. It was tough being a runner and having this because on the outside it looks like nothing is wrong. I kept thinking how it would be a lot easier to have a broken leg or something obvious. I would walk and very nearly find myself in tears as a runner passed me by. But now I am still the same "hyper" crazy productive person that I was before the Graves’. It’s a nuisance, for sure… but in time it will all be okay. Best wishes to you.

[runlacie]

in reply to: Its a boy!! #1063341

Congratulations on the new baby, hyperm!!! I haven’t checked in here in a while, but happened to drop by today and see this news… how wonderful! I’m glad you are feeling so good and hope you and the new little one are both doing well. I think of you all often. I’m okay. Still somewhat up and down, on daily alternating 75/88 mcg. Take care and stay in touch.

[runlacie]

in reply to: Anyone NOT gain weight after RAI? and VENT #1064873

My weight prior to Graves’ was 138. I had symptoms beginning in late April 2009, dx’d in June 2009, RAI July 20, 2009. In those 3 hyper months I lost 8 pounds and was down to 130. Between August and November, I gained about 15 pounds and was up to 145 (7 pounds over my pre-Graves’ weight). It was right around the time I started taking replacement and my levels were closer to normal that I was able to lose again and by Feb. 2010 I was back down to 138.

Exercise (once you are no longer hyper) and be really careful about what you eat and there’s no reason to gain crazy amounts. The biggest problem for me was while I was hyper, I ate huge amounts of food and lost weight… then transitioning to hypo and having to diligently watch my intake plus exercise like a crazy woman and still gain weight was tough. Once my levels were kind of normal (they are still not completely regulated a year post RAI), it got a lot easier.

Good luck with your decision and your baby-making!

[runlacie]

in reply to: One year from RAI #1065520

lol to it happening faster! It has been a really long year of waiting, waiting and more waiting, but on the other hand it seems like just yesterday I found out I had Graves’! I really thought that RAI would be the fastest path to normal, now I’m not sure about that. But if one thing is certain, I’m a lot better than I was last year. ” title=”Wink” />

[runlacie]

in reply to: One year from RAI #1065518

Hi ewmb!
I was just visiting the site and I saw your post. It’s been a while since I’ve posted, but I remember that we went through it all together and I’m glad to see that things are looking up for you! Your experience sounds very similar to my own, with the ups and downs and still trying to find the right dose of levoxyl. I’m on 88 and some days I feel hyper and some days I feel hypo! I go for bloodwork next week and am curious to see where I am at now. I feel pretty good overall. Still have palpatations and PVC’s, but my running was going very good up until recently, I think it’s possible I’m heading hyper now as my HR is rising and I can’t tolerate the hot weather. We’ll see. Anyways, it looks like we are both on a much happier path than last year at this time!
Take care!

[runlacie]

in reply to: Newly diagnosed, need to work out #1066330

Hi, I also was told by my doctor that having a "small" thyroid was better. I had RAI and have seen that some of the formulas used to calculate RAI dosage involve the size of the thyroid. When I was trying to figure out RAI vs ATD’s and reading about ATD’s I do remember reading that remission chance is greater if you have a smaller thyroid.

Also, want to give you some hope… I am a runner. In June of last year I was dx’d with Graves. I had just run a marathon, then 2 wks later a half-marathon, and 2 wks after that I couldn’t run at all (HR way too high) and I was dx’d with Graves’. I was told not to run or do anything that would get my HR up too high. Could lead to irregular beat, cardiac arrest, and yes, Death. I listened to that advice. It was tough, but I spent the summer walking, doing easy core exercise and stretching. I watched my muscles literally drop off my body as the Graves’ wasted them away. Whether or not all of the walking and other exercise helped or hurted, I don’t know, but at least it made me feel a little better. Like I mentioned, I did opt for the RAI (but I now know that ATD’s can actually get you into remission faster than RAI did) anyways, I lost about 4 months of training total. Here’s the good news… though I continue to struggle some trying to get my replacement dosage regulated (my thyroid is still slowly dying), I’m back in full swing and running faster and more miles than ever. You will get back. If there’s one thing I learned about this disease it is that you have to be patient.

[runlacie]

in reply to: HypEr vs. HypO #1066422

I had RAI in July 2009 and I’m still trying to get my meds regulated as my thyroid continues to slowly die, but being THIS way is OH SO MUCH BETTER than being hyper.

[runlacie]

in reply to: Please tell me yoru RAI story!!! #1066413

Graves’ DX in June 2009, had RAI 7mci on 7/20/2009
Gained about 10 pounds but have lost most of it
Levoxyl, started in September(?) 50mcg, currently on 88mcg… still trying to get dosage regulated
Weight- I would say I mostly gained weight because I wasn’t able to run (I’m a runner) when I was hyper… I gained about 5 pounds then, and when I was hypo gained a few more. but then once I started levoxyl and was back to running it came off.

[runlacie]

in reply to: Too much levoxyl? #1066953

Very good info, thanks Ski and Bobbi. Kind of reinforces what I already knew and helps it to make sense. I know I’m not helping by not calling the doctor and I guess I should do that. But if I’ve been taking less for just one week then going for labs now really won’t help, I’d have to take the lower dose for a longer period in order for it to be accurately reflected in my labs. And I can’t afford to pay for tons of labs now that my insurance is making me meet a crazy deductible first. I know I’m not as hyper as before RAI, and maybe my levels could even be "normal"- just not normal for me. I feel exactly like I felt in the months where I was slowly going hyper when I didn’t know I had Graves’ but was getting all of the symptoms. I guess I should just call and tell them what’s going on and also that I want to just take this dose (50) or even less (since I still feel hyper) and go for labs in a couple weeks. I really thought once I had RAI all this crap would be done with and I could just happily take my little pill everyday and enjoy a nice normal life. On the positive side, my body feels very strong again and I have incredible energy… but my HR is slowly creeping up and I can feel the jumpiness coming back. Anyone else might not even notice the slowly increasing heart rate, but because I monitor and track it for my running, I’m seeing it happen.

[runlacie]

in reply to: Too much levoxyl? #1066948

ewmb, it shouldn’t surprise you to know (since we have been like twins through this whole ordeal) that I feel very much the same way. Supposed to be taking 75 mcg but it’s making me too hyper feeling. HR up, warm feeling, jumpy, anxious, the whole ugly deal. And yes, it’s worse just before TOM. I have "forgotten" to take my pill when I feel too hyper. It helps. And the past few days I’ve been taking the leftover 50 mcg pills instead of the 75’s. I don’t feel like calling the doctor and getting chastised for it. So I guess I’m going to just see what my next labs show and go from there. Shame on me for not just calling the doctor to begin with but I’m so sick of the whole ordeal and just want to get on with my life, I don’t feel like dealing with them. Plus I’m mad because my new insurance has a huge deductible and now I’m paying for all of the labs myself until I meet it. It’s a bummer.

[runlacie]

in reply to: How long did it take you to go hypo after ablation? #1067044

enough3 wrote:runlacie- do you think that if you had your labs done sooner that you could have started replacement? I really hope that I don’t get to that place of a RHR of 30’s & low 40’s..that would certainly freak me out. My Endo said I can have my labs done anytime I want. I have been at 4 weeks..then 6 weeks. I’m planning on going at 8 weeks….looking back, would you go 2 weeks in between labs…more or less? Just wanting some thoughts. I just want to catch the hypo thing before it catches me.

enough3- yes, I think I would have been able to start replacement sooner. My tsh was 29.something by the time I had my second labs. and then even after beginning 50mcg, my tsh was even higher (I forget what) at the next 4 week lab. I guess I just went hypo pretty quickly. I wouldn’t get too worried about RHR’s getting to the 30’s, my normal is very low. When I was full blast hyper and tsh was undetectable, my RHR was still falling into the 50’s at night (they had me wear a 24 hour monitor while looking for a diagnosis for me), when I first went to the doctor and told them my HR was too fast they thought I was crazy. You are lucky if your doc will let you get labs every 2 weeks, I think that is great. I was very upset over having to wait for mine when I knew I was clearly hypo. And I have also experienced the palpatations you have, they are no fun. But you’ll get through this and be normal again. You really will.

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