[runlacie]

#1069141

Hi there! No, having Graves’ doesn’t guarantee the eye disease and neither will RAI make you get bad eyes. But if you already have the eye disease then RAI can make it worse. I don’t have the eye part, but was hesitant to do RAI cause my Grandma has Graves’ with really bad eyes and I was afraid I was destined for that, too. Ended up deciding that for me, RAI was the best treatment choice. Everyone is different and chooses a treatment for different reasons, it’s a personal thing. In my case, I just wanted it over with and didn’t want to have to mess around worrying about side effects from the meds or having to stay in the hospital for thyroidectomy. There is a ton of info on this board, and also out there from reputable thyroid sites on the internet. Browse around and soon you will know way more about thyroids than you ever thought you would. ” title=”Wink” /> Feel free to ask any questions. Take care!

[Rfayley]

#1069142

Thank you runlacie. I’m leaning towards RAI because I am absolutely terrified of having surgery (for ANY reason). Also because I am a single parent and cannot stay in the hospital. I hear you about wanting it over & done with. Because I’ve lost so much weight, I feel & look disgusting – my spine & ribs stick out & my face is sunken in so much that I look emaciated. The funny thing is….I can’t believe how many people come out & say things to me about it! The other day, the elevator repair man where I work (who is in the building about once a month) called me over & asked if I was OK. I know alot of people care about me, but the miscellaneous people I run in to kind of surprise me.

[Rfayley]

#1019092

Hi everyone! I was just diagnosed with Graves Disease last week and have some questions as I am not scheduled to see an endo until Sept 1. Until then, I am on 10mg of Methimazole. I’ve researched quite a bit but still have questions. The only symptom I seem to have is that I keep losing weight (down to 99lbs) despite how much I eat. I am not having any issues with my eyes & do not have a goiter. Question – does having Graves guarantee that I will eventually have eye problems? &/or a goiter? Will RAI cause that to happen? I have a whole list of questions for the endo about what happens after having RAI, but I’m not quite sure what else to ask. Also – is RAI the best way to go? My primary Dr said that medication isnt good for long-term so he said I have a choice of RAI or surgery. HELP!

[runlacie]

#1069143

It is nice to have people care enough to notice the weight loss. I lost a couple pounds at first, but have since gained those back. I was running 60 ish miles per week before this, so now that I can’t run I am not able to eat like I used to eat, even with the Graves’ speeding me up. I have noticed flab where it used to be muscle and that really bothers me. lol, I wish I could have lost weight with this, it would have made me faster when I can run again! RAI seemed like the most simple solution to me, but it was a pain in the butt waiting for my rai appt (took 3 weeks or so) and now I am 2 weeks post and still only slightly improved. I find myself second-guessing and wondering if just taking the pills for a year or so and trying for remission might have had me normalized and running by now. I agree that surgery seems extreme, but it was actually my first instinct to say "just get this sucker outta me!" Good luck w/whatever you decide. The good news is we are curable.

[James]

#1069144

There is no right or wrong answer that can be given to you concerning RAI or any of the other of the valid treatment options that are available to us. Dr.’s as well patients have their own opinions and often times biases even come into play when an opinion is given. The most important thing right now is that you ARE being treated, and since your next appointment is still about a month away, it was probably wise of your Dr. to place you on an ATD (antithyroid medication). Since you are so newly diagnosed, it is hard to know how you will be feeling about a month from now and even beyond that. Best thing to do is to take one day at a time. The ATD option, will at least provide you with time to in making a decision. My experience (as a very physically active person myself) was that I felt 85% better within about 6-8 weeks and 90-100% better at about 10-12 weeks (everyone is different though). I began with 30mg/day to get my levels down quickly and weaned down from there. I believe that a large part of the problem with the people not doing well with ATD therapy is that their levels aren’t being managed properly. Frequent blood tests are important right now during the initial phases and until you get stable. It is important that Free T3 & Free T4 tests are taken, not just TSH. Also, ATD medication at low maintenance doses can be a long term option as well (been there and done that). Your Dr. of course should be a good source of information concerning some of those questions as well as ways to safeguard yourself.

Keep us posted on how you are progressing.

Best regards,

James

[hyperm]

#1069145

Hi,

Welcome! It can be rather overwhelming – we have all been there so hang in there.

I have had a TT just 14 days ago after 4 years of battling this condition and 8 months of feeling really unwell. So my answer would be go for the RAI or surgery, I wish I had done that at the beginning of my diagnosis. Of course it has to be your decision.

I too lost a lot of weight 4 years ago and my neighbour asked my mum if I was anorexic I looked so gaunt. Then after being on the meds I ballooned up for a while.

There is lots of information in the archive on here and we are all here to support you and help you through your decision.

In the meantime take lots of care especially if you are a single mum – you must be exhausted xxxx

[Hopeful23]

#1069146

Hi welcome to the BEST SUPPORT FOUNDATION EVER ” title=”Smile” />

Here is my story. I had RAI May 12 2009. DID not experience soar throat, swollen salivary glands, eye issues, or the 3 day confinement. I was lucky I guess. However its not uncommon to have those a few days after the RAI. I became hypo two weeks ago and was REALLY FEELING AWFUL. Im talking ‘wall banging, wall hugging’ awful. My fourth day on synthroid that all stopped. Every day has been a better day towards the OLD me. I was VERY hyperthyroid at time of diagnosis and was "lucky" to not have gone into thyroid storm. I had to choose RAI or SURGERY when I reacted really badly to both the TAPAZOLE AND THE PTU. I had symptoms that are not even listed on the side effects as well as the ones listed.

I chose RAI as my treatment option because when I went in for my TT consultationn I literally ran out of the room crying and screaming RADIATION NOOOOOOW. LOL. If i had to go back and do it all over again, RAI would still be my treatment choice. It was very very good to me and I am a sensitive person when it comes to medication and treatments. RAI and Synthroid has given me hope, strength and a better future. I really wish you the best of luck at this hard time. Its confusing and it SUCKS but as long as you stay active in your endo and your research it will be OKAY in the end. I can’t promise roses but it will be worth it. Your endo and you will decide what treatment option will benefit you the most. As far as a goiter I didn’t start getting that until my levels were in thyroid storm area. My goiter is almost completely gone. I was choking on it for a little while but it wasnt causing trauma to my esphogus or me so we let the RAI due its job:)

Make sure you write all your questions/symptoms down so your endo can see everything your dealing with ” title=”Smile” />

[Rfayley]

#1069147

Thank you so much to all who have responded! I go back to my primary doctor tomorrow for bloodwork to see how the Methimazole is working, but I have only been on it for a week. I will definately keep you all posted as my journey through this progresses. I’m so relieved to know there are people like you all out there to guide & support me through what is to come! Have a great day everyone!

Gayle

[stingray94]

#1069148

Hello, I just found out in Jan. I have Graves, and I am new to this. I am so relieved to know that I am not the only one going through this… I have researched and researched and not found any useful information or able to find anyone who knows the symptoms and treatment. I have not been able to find the right doctor who understands. I am on methinzole and have been for five months. I have to do the RAI in September, the doctor says I am responding quicker than he expected, so thats good. I am only on 5mg now, started out on 20mg in March. It has been crazy with the heart . I know what your going through and it is very confusing. I went hypo to soon to take the radiation so thats why I am on 5 mg. I’ve been in the hospital 2 times with pvc’s, thought I was having a heart attack. I still don’t feel great, but I feel better. It can be confusing and you think your all alone. I pray a lot. Maybe I can answer some questions, I will try. Good luck…

God bless,
Karen ” title=”Smile” />

[Rfayley]

#1069149

Hi,

Went to my primary doctor today for more bloodwork. Did I mention I am terrified of needles? Break out the smelling salts!! I’m thinking that this Graves Disease is not going to be a good fit for me! ” title=”Sad” /> Anyways…I should be getting my results sometime tomorrow. The Dr said my goiter is getting a little bigger, but so far I haven’t noticed anything. I’ve got to say, this whole thing took me completely by surprise. I had been having issues for about 3 months before going to the doc and a thyroid problem was not even in my mind as to a possible cause. He mentioned today that after I have RAI, I will go from hyperthyroid to hypothyroid and there is a good chance that a bunch of my hair will fall out. Has anyone else experienced this? Should I plan on getting my hair cut short before having the treatment?

Gotta go back to work now – have a great day everyone!

Gayle

[ewmb]

#1069150

I only noticed that I had more hair on my pillow in the morning. It wasn’t big enough to notice but everyone is different.

ewmb

[runlacie]

#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.

[Ski]

#1069152

The hair loss is usually minimal ~ people hear "radiation" and "hair loss" and envision chemo-type hair loss, which we typically do not experience. Not even close. It’s a reaction of the body to rapidly shifting (or way out of whack) thyroid hormone levels, where the body removes support from "non-essentials" like hair and nails, so just a little more hair than usual is lost. It resolves when levels stabilize, and usually does not result in anything that people will notice much. If your hair is very thin usually, you may want to just get it cut shorter for that period of time, in a style that you don’t have to mess with much. It’ll reduce the amount you lose, and short hair looks less scary when you see it on the pillow. Avoid coloring/perming during that time as well, and skip the hats. Anything you can do to baby it will minimize the loss.

[Rfayley]

#1069153

Well, I got the results from my bloodwork the other day & the dr says my levels are doing great. He wants to do more next week to check on the Methimazole again. In the meantime…..I read Living Well with Graves Disease by Mary Shomon and it was very enlightening. I am now on the fence as to whether or not I want to have RAI or persuade my doctor to keep me on ATD’s (which he is against for whatever reason). If there is a chance for remission, I’m thinking I might want to try that route first and if it doesn’t work then try RAI. I wonder (after reading the book), if I would have a better chance at remission if I make some lifestyle changes – quit smoking & eat healthier? Has anyone noticed any differences when changing their diet? I also have a couple of other questions please. I’ve read several posts from others who are run down, lethargic and emotionally drained from Graves. Is that my destiny? I am not excessively tired – my alarm goes off at 4:30am so I’ve always been a little sleepy in the early evenings, but that is to be expected. I actually feel fine right now. I’ve lost almost 20lbs due to severe diarrhea & lost most of my muscle mass, but since being on Methimazole, those symptoms have gone away. I know everyone has to pick the treatment that is best for them, but honestly, I really have no idea what to do. Everything seems so surreal right now, which I think is partly due to not having major symptoms. I’m soooo confused!

Gayle

[jessica]

#1069154

hi everyone,
i`ve recently been diagnosed with grave`s. i have a 8 and half month old son and i`m finding it soooo hard to take care of him and myself. tierd but can`t sleep. loosing weight, have a goiter, spent the day in the hospital this week because of heart palpitations and now i`m on heart medication- i`m 26 years old! going for the RAI treatment on aug.17th, i`m pretty scared. sooo many questions and concerns. will the RAI hurt? what will i feel like after the RAI? how long will it take me to recover? can i have another baby,will it be healthy, will grave`s come back if i do? do i have this for the rest of my life? do the symptoms go away with RAI? OMG i`m scared! don`t want my eyes to pop out. sick of feeling like crap. i used to work out and feel great but now i don`t have the muscle strength to do anything, even going up stairs or standing up when i`m crouched down is hard to do. please someone help me get through this!
jessica

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