[runlacie]

#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!

[jessica]

#1069156

thanks runlacie, you`ve answered my questions. it`s nice to hear feedback from people that have the same thing. it`s good to know that ur not alone. we really need support during this hard time. yes the doctors put me on a beta blocker called atenolol. it works, i feel a lot better with it, i can breathe and my heart isn`t racing like it was. ya, we have to stay positive, but some days it`s hard, but i guess thats why they created this site. it`s kinda discouraging though, that it takes a while to feel better after the RAI. oh well, it is what it is i guess. in the meantime i`ll try to stay positive and look for support by all of u folks out there that r going through the same thing. take care everyone!
jessica

[James]

#1069157

Hi Gayle,

If your Dr. is saying you are doing great, then that is to be celebrated. If you are not experiencing “major symptoms”, that is also a very positive sign. I have learned over the years the GD can affect individual people in some very different ways, it’s not one size fits all, although there are definitely some common symptoms. Press your Dr. to tell you more specifically why he is against ATD in you particular case. If ATD’s are the option you want to try first it is important that you have your Dr. onside with this decision. If there is a medically compelling reason that you can’t be on ATD’s, your Dr. needs to tell you why. Make sure you get as much information from your Dr. as possible . . that is not too much to expect, it is what you deserve as a patient.

Although it is impossible to prove with certainty that lifestyle changes will hasten remission; it is known that smoking can exacerbate or make the GD symptoms worse. Quitting smoking definitely would be a good start. I made certainly lifestyle changes myself and it was only to my benefit of ALL health fronts. Anything you can do to improve your diet and lifestyle should be employed regardless.

Try to not to worry about, “this person who experienced that” or, “that person who experienced this”. You say you feel fine right now . . . that’s GREAT. You have to take this process one day at a time and often your experiences with the disease will help give you direction as to what your ultimate treatment plan will entail. The important thing right now is that you ARE being treated and that you are under a Dr.’s supervision.

Keep us posted on your progress!

James

[Rfayley]

#1069158

Thanks again everyone….you guys are great! I am definately going to ask my doctor more questions. I feel that after reading that book, reading the message board & talking with everyone, I have a little bit better of an understanding as to what to ask. It’s difficult when first diagnosed and you’ve never heard about it before…..huh? Graves Disease? What’s that? Then they ask if you have any questions – I sat there…uh, I dunno! On another note, I was going crazy trying to figure out how I got this stupid disease since everything says it is genetic. Well, the other day, I was looking at a bunch of old pics of my Mom (passed 8yrs ago) and I noticed her eyes looked funny. I called my Dad & apparently a light bulb went off for him. He said he all of the sudden remembers Mom’s doctor saying he was concerned about her eyes & wanted to test her thyroid, but she refused. (she had alot of health issues & each new diagnosis put her into a deep depression). So….when I go to the Dr this week, I am going to see if they still have her file archived somewhere (she went to the same office but a different dr). I am going to ask if there are any notes about it & see whether or not she did end up having testing done.

It stinks cause I really wish my Mom were here with me. My Dad is doing the best he can (support wise) for me, but my one sister put the thought in his head that I am exagggerating everything the Dr says, there’s no need for any special treatments (RAI/surgery) and I am making a big deal out of nothing because "she knows" people that have thyroid problems and all they do is take a pill & they’re fine. Apparently she went to medical school without any of us knowing!!! Anyways, I try not to let her get to me & told Dad he could go to the Dr with me so he could hear everything first-hand. Any one else have a ‘wonderful’ relative like mine?!?!?

[ewmb]

#1069159

Sorry you’re having a hard time with your sister. You’ll have to tell her that the friends she has are not hyperthyroid most likely but hypo if they just take a pill and they’re fine. You might be right about your mom. Hope you can find some answers there. Maybe you can print out one of the information brochures or web md page and let your sister read the difference. There are lots of family members who don’t want to understand at first. Graves really will harm you if you don’t take care of it so good for you for asking questions and finding out as much as you can. The important thing is that you are getting treated somehow.

ewmb

[hyperm]

#1069160

Hey I think you and I may be related – as your sister sounds like one of mine! Seemingly I was over exagerating my thyroid issues – then she got a shock when it all kicked off and now had surgery. She is one of my other 2 sisters who has recently been diagnosed with GD – wouldn’t wish it on my worst enemy but you should be very careful what you say!

My mum has heamatomachrosis which is – if left untreated a very life threatening condition. Anyway when she was diagnosed all family members including her siblings had been advised to be tested as she had both faulty genes and my grandfather had his 1st heart attack at 40 – which they now believe was most likely this condition. Well my uncle through marriage – didn’t want his wife to have this condition ( you gotta know this man boy is he hard work). Well like your sister he said oh they just give you a wee pill for that…my mum had 14 pints of blood taken over 14 weeks as her ferratin was 1088 and should only be at the highest max – 50! She could have had a massive stroke! As they took the blood (just like donating blood) it turned into like a thick jelly in the bag. ” title=”Wink” />

My advice is to just ignore you sister – she will be like that with everyone and one day you should say in front of other people while she is there – since when did you qualify as a medic? If you read my first posts on here – " a pill" didn’t help me or many others – some of us have been critically ill.

You need to get yourself well and people like that just hamper that process….. just now you need to think of your recovery. We are all with you! xxx

[jroethlisberger]

#1069161

Hi,
I was diagnosed about a year ago, with Grave’s Disease and Exopthalmos (only one eye seems to be effected). I was on three different meds at the same time for about 9 months, when my labs came back really low. My Endo decided to take me off the meds to see if the levels would even out, but 3 months later (now) they are still pretty low. My symptoms have been getting worse, and now My MD says he wants me to think about having my thyroid removed. Well I’m not so sure about this, because then I’ll be Hypo- for the rest of my life. I don’t know what to do. I don’t have anyone to talk to about this, and I just thought that if there was anyone out there that could offer some advise, it would be greatly appreciated. Also, I’m really sorry about posting this way, but I couldn’t figure out how else to ask my question with out having to reply to some one else’s post????? Yes, I’m computer stupid. ” title=”Wink” />

[Rfayley]

#1069162

Hyperm – I am so sorry to hear about your Mom. I hope everything works out with her…and YOU! What a terrible hand your family has been dealt. I will definately ignore my sister – it’s worked for the past 8 years, so I’m sure it will continue to work. ” title=”Smile” />

Jessie – Since I am new to all of this so unfortunately I’m probably not going to be any help. My primary Dr (haven’t seen the endo yet) has already stated he wants me to have RAI, but after doing some research, I am going to talk to him today about whether or not I can continue on the anti-thyroid meds to try to reach remission before doing anything permanent. But….one thing with that, I found there is a 60-70% relapse rate after a couple years off the thyroid meds. In the end, I will probably just end up doing the RAI anyways. No worries about posting off of this one – I had the same problem trying to find how to start a new topic when I first joined the group. Try again – when you go into the index page, under the green section at the top, there will be semi-big letters ‘NGDF.Org’ – underneath that should be a tab to Start New Topic. May take a couple of tries but it should be there eventually!

[Kimberly]

#1069163

jroethlisberger wrote: My Endo decided to take me off the meds to see if the levels would even out, but 3 months later (now) they are still pretty low.

Hello – When you say your levels are "low" are you talking about TSH? Free T3 and Free T4 are actually more accurate benchmarks while we are being treated for hyperthyroidism…and these will be out of range *high* if we are hyper.

If you can, I would recommend pressing your doctor to check FT3 and FT4 as well.

Best of luck!

[Kimberly]

#1069164

Rfayley wrote: But….one thing with that, I found there is a 60-70% relapse rate after a couple years off the thyroid meds. In the end, I will probably just end up doing the RAI anyways.

Hello – My understanding is that the 60-70% relapse rate could be significantly improved *if* doctors tested our autoantibody levels prior to taking us off the ATDs. If you remove the ATDs while our autoantibodies are still raging, it’s pretty much guaranteed that we will relapse sooner or later. I have also heard anecdotal evidence that weaning off the drugs slowly produces a better result than going "cold turkey".

[jessica]

#1069165

wow,i`m really nervous because i`m scheduled for RAI on monday aug.24th 2009. i`m researching to see if there r other things to be done in a more natural way. there`s exercises, naturopath, natural pills. i don`t know if it will help and i don`t really have 500 or more $ to spend on all this. i don`t know what to do, cancel my RAI and try the natural way, or go straight for the RAI. HELP!

[runlacie]

#1069166

Hi Jessica! Basically if you have GD, you have 3 choices- RAI, anti-thyroid meds, or surgical removal of thyroid. I don’t think there is really a "natural" option. Maybe if you keep your thyroid and take anti-thyroid drugs, you might get it into remission and then maybe some of those natural things might help you stay that way. I don’t know, but some of the people on the board who have been successful with ATD’s (James comes to mind) may have some ideas along those lines. What does your doctor say? Did your doctor give you an option to take the anti-thyroid drugs? Keep thinking about it. It’s up to you, but I wouldn’t do anything until you are sure what you want. All that being said, I had rai one month ago, so far so good. Our disease is very treatable and most outcomes are very positive, so try not to be toooo nervous. Keep asking questions til you figure it out, OK?

[Andros]

#1069167

"jessica":1et8nghq wrote:

wow,i`m really nervous because i`m scheduled for RAI on monday aug.24th 2009. i`m researching to see if there r other things to be done in a more natural way. there`s exercises, naturopath, natural pills. i don`t know if it will help and i don`t really have 500 or more $ to spend on all this. i don`t know what to do, cancel my RAI and try the natural way, or go straight for the RAI. HELP![/quote:1et8nghq]

Jessica…………………..it is my very humble opinion that Graves’ Disease is much too serious to opt for alternative medicine. You could end up with severely damaged organs; especially the heart as well as a myriad of other health problems.

I presume you have given antithyroid meds a chance and you have not gone into remission hence the decision to do RAI? If this is the case, it is probably better to go ahead w/ the RAI although many do opt for surgery as a personal preference.

Please let us "all" know what you decide to do. We are here for you. Lu Anne

[jessica]

#1069168

hi guys, i got the RAI done on aug.24th. i decided not to do it the natural way. i talked with a naturopath and he said that there is a natural treatment to do but that my hormone levels were too high so he suggested that i do the RAI treatment. i`m happy to say that i began to feel a lot better the week after the RAI. i had more energy and the shaking of the hands decreased. it`s been almost a month now and i`ve stopped the beta blocker atenolol. i feel like myself again and i`ve regained some weight. so thank u everyone for ur support!!!! this is a great site for support and answers to help us get through a tough time. take care everyone. xxx

[hockey]

#1069169

Hi Jessica,

Just wondering – what was the natural treatment your naturopath suggested? I’ve been trying accupuncture, at first it seemed to calm me down and the numbers from my blood tests even lowered a bit, but it doesn’t seem to be working now.

Thanks!

[Author]

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