[RhondaG4]

#1071540

Blessings,
I’m kinda new here also, and I don’t think you’ll find a better bunch of folks for support and info. If you are coming out of remission and are hyper again, you need to decide to do some sort of treatment. Hyper can be a life threatning condition. It is called thyroid storm, and it can kill people.

I personally had my RAI today actually. Until you decide what is right for you, you should at least be on some medication to keep the hyper under control. They can do this thru ATD…anti thyroid drugs..and they can use beta blockers…blood pressure meds..for high heart rates.

I’ve been told about loosing muscle mass, but have some other problems that I’m already in physical thearpy for. Yes, you have to be careful of your muscles while being hyper. My endo actually used the word "seperation" when I told him about my shoulder muscle that used to have a knot but now has a huge hole in it. Also, Osteopenia and Osteoporosis can go hand in hand with Graves. Before my RAI today, I was walking in the pool 3 times a week, just for the light weight bearing exercise.
Right before my Dx I found out from a bone scan that I have a 9 times greater chance of breaking a bone then anyone else in my age group, and I’m only 38 and not even pre meno yet. Go figure.

I would find a doc that you are comfortable with. Just the little time that I’ve known about having this, I’ve had to go to my Endo alot. He’s not much on the chatty side, and like you I had to do alot of research on my own. But he is the only guy in town, but is extremely smart and I trust him alot. Until you’ve done your own research and your sure what you want to do, don’t let anyone push you in a direction you aren’t comfortable with, but having said that, also don’t just wait around. At least get on some meds to get the hyper under control so it doesn’t get out of hand. First thing I would do if I were you is look into finding a new doc, and then maybe discuss some meds with him until you make up your mind. I hope this helps. Rhonda

[Blessed]

#1019420

Hi all,
I’ve accidentally, and am sooooo glad I did, come across this website. I had NO IDEA there was an actual Foundation for us Graves’ Disease patients. I’ve spent the last hour reading over many of your postings and have found them soooo helpful. I’m actually not so happy with my doctor right now for not shinning the light on HALF of the stuff I’ve learned here tonight. As I’ve been reading I’ve been writing down questions for him and my soon to be new doctor, if I’m lucky enough to find a better one! I too am not happy with my endo, he is very short with me and has his hand on the door waiting to leave after he drops the RAI bomb and tells me to think about it after he has his nurse give me a piece of paper to read about it. Of course on the car ride home are when all the questions start coming, not in his office when he’s right there in front of me. AHHHH!!!!! Anyway, mostly just wanted to say how glad and soooo relieved I am that I’ve found you all. I was just telling my husband that until an hour ago I did NOT know how serious the disease can be b/c it was never explained to me. Luckily I’ve been very fortunate not to have had many problems. I am a 30 yr. old female who’s had this for about 2 yrs now and after coming out of remission am now hyperactive again. I’m doing my research here to find out what I can about RAI and after effects. If I needed to leave you all with a question it would be this…Just how long is too long to wait to seek treatment? I am not currently on any meds and he’s told me to call him when I’ve decided what I want to do, continue the tapazole or do as he recommends, the RAI, but gives me NO timeline as to how long I have to decide. He told me this on Tues the 28th. If it were up to me (until reading all your input tonight) I’d never call him back b/c I’m feeling perfectly fine. Any thoughts?????? Thanks ya’ll and I’m so excited to learn and interact here! Also, is it really true that I may be loosing muscle mass from doing a strict cardio workout? I feel fine during, no palpitations or anything. Do I really have to settle with overweight forever?
Blessed in TN, USA

[ely2009]

#1071541

I know what you mean about the doc talking to you from the doorway – mine does the same thing and that definitely doesn’t help when you have lots of questions and you feel rushed. Good luck in finding someone else. I’m trying to and have not had much luck yet – the "good" endo that people recommend is REALLY hard to get in to.

Emily

[mamabear]

#1071542

Blessed, hello and welcome .

I have to get moving here but i really did want to post this to you…

Why not put you back on meds again and try to remission again? Um that would make sense wouldn’t it? Is he unwilling to try again this time. So what if you come out of remission, just do the meds again and work on another remission. It’s worth a shot.

I did it and the dr. i went to was the one I "had" to go to. He said after I felt "off" that he didn’t want to treat me with PTU(drug of choice when trying to get pregnant(at the time two years ago it was not sure about now)). He said he would treat me with Tapazole because I shouldn’t be trying for another child because I have 4 and was already 32.

WELL, so I wont cause HyperM(a member here that loves my sarcasm) have a heart attack as to what I told him. Lets just say I didn’t go back to him. I wound up using the PTU that I had and went on a search for another dr. and found her and well bottom line is I went off meds a short time later and have been in remission AGAIN for almost 2 yrs now.

That dr. that was a jerk told me that RAI would have to be it since I was going out of remission. I said no way!

Just to put this into perspective for you and everyone else…
I was finally diagnosed with blood work Feb 2001 with Graves disease. it was mild and throat wasn’t bad at all. I was given PTU to try after 5months of figuring out if i should or not. I went on it and by oct 2001 I was within normal range. Dr. said try for baby I wound up getting pregnant by end of april beginning may of 2002. My meds were stopped due to climbing into high levels and dr. feared I would Miscarry.
2003 a boy was born and my levels were still great.
Had another baby in 2004 and levels were still great.
Had RotaVirus 12/31/04 and by Feb 2005 I was horrible and wound up going on meds(same dr. too and he was still a jerk then). Was fine with it until beginning 2007 after having been sick for a long time with virus’.
He said you’re barely out of range and i wont treat you. I went 6 weeks later and still wasn’t well and he still refused to do it.

Its been 8 years since I was diagnosed and most of that time I have been fine. I go into remission for long periods of time and see no need to choose a different path for myself I go out of remission again. Unless of course there are other health issues.

I understand he sees this as oh well you’re out of remission so lets just treat you with this so you can just go on Thyroid replacement and be done with it. But that might not be what you want. Think long and hard for this. If you maintain remission for long periods of time you might just need a dr. that sees it your way with medicine.

Good luck and keep us posted.

Oh ok, I’ll say this so everyone gets a kick out of it…
I was in a dr’s office for a visit and the dr. had his hand on the door. I asked him if he was going on a date or had a surgery he was going to go into the hospital for. He replied "no". I said "then get your hand off of that door like i am so dumba** that doesn’t know what you are going, treat me with respect my taking the S**t out of your ears and look me in the eyes and listen to what I have to say or I will get cranky"! Lets just say he listened to me and then I never went back to him because I didnt like him. ROFL

[Ski]

#1071543

Hi Blessed,

If you have tested hyperthyroid again, you really need to address it somehow. If you want to use Tapazole again to get your levels back into the normal range, that’s a perfectly valid decision, and even if the chances for a second remission are small, if you are IN that group of success stories, it works 100% for you. It’s just too dangerous to continue being hyperthyroid ~ by the time you start feeling really badly, the damage your body has suffered could be severe.

I’m so glad you found us, and I’m glad that reading our posts has taught you so much! ” title=”Very Happy” /> Welcome.

[hyperm]

#1071544

oh mamabear you are so funny! Where you perhaps in your hyper stage when you said that to him? I can just imagine his face when you asked him if he was going on a date!!! Yes I love the sarcasm – I think its to do with the Scottish sense of humour! My endo said that he often gets people (all women) pull him across the desk with his tie and curse and swear at him. He said he even had a death threat! ” title=”Very Happy” /> He is very good natured – he is someone I would get on well with socially. He said he just takes it in his stride and says "ok some blood work needing done I think and perhaps an increase in the meds may help!!!" ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” />

I was always very quite natured before this condition. We had an acting manager who was making all our lives a misery. She became obsessed by food (mainly nuts and berries) and would go on at the staff saying we were all food hoovers. We were all getting fed up. Well mrs thyroid was present one day at lunch time and when she started to go on I could feel the annoyance and aggiatation setting in so I blurted out " You know what you need Eileen?" she said "no" I said " a fish supper" ( which is fish and chips deep fried over here). Her jaw dropped as well as the rest of the staff as it was so out of character. But oh I got a kick as I stood up calmly and left the lunch table!

Oh the joys

[Blessed]

#1071545

Oh how i wish i had the time to reply to each and everyone of you who have been so wonderful to give me some VERY helpful input. I’ve learned lots from just reading your replies and have added some questions to my tablet for my doctor visit tommorrow. I called the office today with more than 15 questions and she said I’ll just have to come back in to discuss it in person with the doctor since I had too many questions. I have to drive an hour to see him, why couldn’t he just give me a min. to process it and ask while I was just there on Tues. Anyway, thank you all for your help. I will post again tommorrow after my appointment. I’m am really hoping that I can do the same mamabear. I feel totally fine so maybe staying on the meds and hoping for another remission is the way to go. We will see, he made it sound like it’s just easier to treat with RAI, well for him or for me??????? DOCTORS!!!!!!!!
Check back in with me often if you all would please, you’ve already been super helpful.
Leah aka Blessed

[RhondaG4]

#1071546

Hey Blessed…where did you go?????

[Blessed]

#1071547

Yesterday was a long day for me and when I got home I wanted to hang out with my boys! ” title=”Very Happy” />
So, I was actually quite pleased with my doctor yesterday, but why did I have to go all the way back in to get that response from him??? Anyway, I told him that I’ve found this great website and have learned lots of information and so I had 18 questions wrote down to read off to him. Thanks to you all. He answered them all to my liking and even told me they were good questions. He still recommends RAI and I understand why a little better now. He’s a doctor and they want to cure if they can. He told me that if I had high blood pressure, he’d want to cure it not just treat it, same goes with my thyroid. He made me feel comfortable about the RAI but still not sure if that’s what I want to do. Currently my TSH is 0 and he gave me a few days to decide on RAI or hope for another remission again on Tapazole. I didn’t think to ask him the most important question until after I got home, should I be on an ATD while I’m waiting to make my decision? I have no idea, nor can he just how long I’ve been hyper again. In Jan my levels were borderline then in April as of last Tues I’m again hyper, so anywhere between Jan and now I could have been hyper and that’s close to 5 mths. ” title=”Confused” /> But I’m not really having any symptoms so I’m hoping that’s a good thing. And it’s the weekend so I can’t call until monday to ask him to write me a prescription. I was also concerned about leaving my thryoid in and it not working if it was more susceptible to cancer, he said no. He calmed my worries about being overweight with RAI, that as you all know already I may go hypo but won’t stay that way and can work out all I want and be fine b/c I’ll be regulated. Anywho, that’s the latest. Thank you for checking on me. I’ll really be thinking this weekend what I want to do. I was glad to know that there would be no side effects with synthroid if I decide to go that route b/c it’s identical to what the thyroid puts off now anyway.

[Kimberly]

#1071548

Blessed wrote: He told me that if I had high blood pressure, he’d want to cure it not just treat it, same goes with my thyroid. He made me feel comfortable about the RAI but still not sure if that’s what I want to do.

Hi Blessed – I would echo those who have suggested that you start back on ATDs at least temporarily while you make your decision.

Also, to clarify, RAI will "cure" your hyperthyroidism, but *not* your autoimmunity issues. Having RAI doesn’t make the disease itself go away…you will still need to be on the lookout for potential eye complications due to Graves.

Best of luck…I know you are probably suffering from information overload right now!

[RhondaG4]

#1071549

Blessed,
Glad to hear from you. I had my RAI on Wed and somewhere on here I posted as to how I’ve been doing since then. Also…from what I understand you have less symtoms if you are what they call Euthyroid before having surgery or RAI. That basically means you aren’t hyper or hypo. A short course of ATD’s did this for me. I mean like 3 months worth. I was on Methamazole. My TSH was .08 when I went in…but keep in mind that your T3 and T4 will change before your TSH levels…TSH levels can take months to catch up to your T3 and T4. Keep in mind also that RAI "can" take up to 3 times to work all the way. And also like Kimberly said….it will take care of the hyperthyroid…but won’t get rid of the Graves Disease it’self.

Also keep in mind that you will need to give your body some time to recover from being hyper before working out as if you never had anything. Your body didnt become hyper again overnight, and it does take time to recover from a hyper state. As far as I can see….it wouldn’t hurt for you to be on a ATD while you are making your decision. That way if you decide to try for remission again..your already on your road…and if you decide for RAI….your on your road to having less complications afterwards. If you can "dump" your excess T4 over a longer time peroid if you decide for RAI, then you are less likely to go really hyper from a dumping of the hormones built up in your system. Of course then at some point most go hypo, but the hormones have to go somewhere. I hope I’m not giving you too much info at once. Keep us posted and if you have more questions…just ask away. http://www.thyroidmanager.org is a great site..don’t know if I shared that with you, but it has "Dr" talk and info on there, and a search engine that you can search the site with, and stuff from docs all over the world. Hope that helps. Rhonda

[Blessed]

#1071550

Hi Girls,
Yes, thank you for your advice. I’m so frustrated with myself for not asking him that question about ATD while I’m waiting to make my decision. Have to wait til monday now but will call first thing for sure. Also, he did tell me that I will still carry the antibody that could still attack my eye muscles. I was aware of that. Kimberly, did you have RAI? Or are your trying for a remission? Just like to hear others stories, although, sometimes I’m not so sure that’s a good thing b/c it can really scare you and make you 2nd guess your doctor when you hear other people’s experiences. But like my husband said, the smart thing to do is probably listen to my doctor, he knows what’s best for ME. Everyone is different so while others are having a horrible time with their Graves, I’m fortunate enough to be on the other end of that. Just hope it really is as simple as he says once I’ve done the RAI, to regulate me again. I will definitly check out the site you suggested Rhonda, it may help lots also. I feel like I’ve got most of the info I need to make my decision, the only thing I’m not sure about is my levels. All I know is my TSH is 0 and that isn’t good but I have no idea what my T3 and T4 levels are and how they coincide with my TSH. AHHHHH!!!! So, I don’t understand what you mean when you talk about dumping my T4 levels Rhonda. I guess I better get a little more schooled in that department. I can’t tell you how much I appreciate everyone and their advice/input, it’s been enormously helpful. Thank you tons!!!!!! I’ll keep you all updated. Hope your dealing well with your RAI Rhonda!
Leah aka Blessed

[Kimberly]

#1071551

Blessed wrote: Kimberly, did you have RAI? Or are your trying for a remission?

Hi Leah,

Right now, I am trying for remission with ATDs. After 18 months, I’m now taking 5 mg of MMI per day, and my Free T3 and Free T4 are right in the middle of the "normal" range, although my TSH is still suppressed.

My plan is to stay the course with the ATDs, unless I am forced to discontinue at some point in the future due to liver or WBC issues. I get this checked every 3 months to make sure everything is OK.

My energy is pretty good, although I don’t feel I’m 100%. I take a tennis lesson for an hour once a week and do pretty well with that, although I tried to play 90 minutes of singles a few weeks ago, which was a HUGE mistake! I wanted to crawl in bed and sleep for a week.
While I know I might have to think about RAI or Thyroidectomy at some point, I guess my motto for now is, "if it ain’t (too horribly) broke, don’t fix it." ” title=”Wink” />

[graciehere]

#1071552

Welcome! I just found this web site myself a couple days ago and have been reading posts non stop it seems. I’ve learned alot more here than with my doc as well, although she did tell me alot and gave me many options. I’m very against surgery unless there’s no other way, so I opted for medication. I was so thankful to read that others have many or the same symptoms I’m suffering and am not alone in this or crazy! It’s alot to grasp at first. I had no idea how much is involved, just looking forward to better days ahead! Good luck with your decision, I would’nt be a good one to give you advise, but hope it all works out for you!

[Ski]

#1071553

Just a quick lesson about TSH and T3/T4 levels. T4 is the thyroid hormone that is released by the thyroid. It is inactive in the bloodstream and is converted into T3 when the body needs it. T4 levels are usually pretty constant, given normal conditions. In GD patients that are actively hyperthyroid, T4 levels will be elevated. T3 levels can rise and fall during the day, depending on your needs, but sometimes a chronically low level or chronically high level can indicate a problem.

TSH is Thyroid Stimulating Hormone, which is released by the pituitary gland in response to the T4 levels it "reads" in your bloodstream. When things are fine, both are in their respective normal ranges. When we start to have higher levels of T4 in our bloodstream, the TSH value will go down, to "instruct" the thyroid not to release so much hormone. Unfortunately, our GD antibodies mimic TSH, so the thyroid still thinks it’s being told to release more, more, more. So the TSH continues to go down in an effort to adjust the thyroid hormone levels, and the T4 levels continue to rise as the thyroid releases more and more hormone based on the antibody attack. The pituitary reads an average of the T4 levels (think over a few weeks’ time), so the TSH level can be slow to respond as T4 levels change dramatically after treatment or during the effort to stabilize your levels.

Does that help, Leah?

[Author]

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