lots of graves questions

[goldie44]

I was diagnosed Aug 2006 with graves.  I wasn't very symptomatic at the time but put on methimazole in sept.  Since then I have flip flopped back and forth between hypo and hyper.  I was pos for the graves antibodies.  Endocrinologist wants me to do radioactive iodine.  I do have some puffiness above the eyes and am not sure what grade of eye disease this constitutes.  I keep hearing radioactive iodine makes this worse, so this makes me leary of it.  Also, I was on amiodarone for over a year and 24 hr urine iodine was 3 times what it should be.  What is the chance of going into remission and staying in remission if I was on amiodarone? If I end up doing the radio iodine, is it much easier to keep it under control then???  Also is there any research or data for getting thyroid cancer after the radio iodine?  Also, do people typically gain weight after radioactive iodine????  It sounds like if I did do it, takes an average 3 months to become euthyroid.  Thanks in advance for your help

[Mark Lupo, M.D.]

There is no rush for RAI and eye problems may get worse after RAI unless prednisone is used.  I usually try to adjust the tapazole to keep thyroid levels normal.  Depending on when the amiodarone was stopped, it may be that the iodine load is still high enough to drive the hyperthyroidism in an otherwise "quiet" Graves disease background -- so would not go straight to RAI unless things are not able to be controlled (of course surgery would then be another alternative).  It takes about 6 months or so for the amiodarone to clear the system.

Weight gain may happen no matter how the hyperthyroid is treated - surgery, RAI or tapazole...

[GravesGirl]

hi Goldie, I have Graves too. I have been on meds for about a year. I started on 2.5 mgs as my disease is mild. I stopped taking it for about 2 weeks and my levels went hyper again, well almost . My doc put me on 5 mgs and by the third month on it I was in hypo range, altho felt fine and didn't gain more than 2 or 3 puunds( I was underweight at the beginning) I gained about 10 in a year, which was fine.My doc didn't reduce me, he said stay on the 5, till next time when I'd go every other day. I reduced it myself to 3.75. Good thing I had cause my tsh went from 4 to 6. He wasn't pleased I reduced without telling him and said 3.75 wasn't a recognized dose,and I was putting myself in danger etc. He then put me on 5 mgs 3 times a week. I just started, so I'll see what happens. Don't do RAI. I know people on another message board who have joint pain all the time, a lot of weight gain, hair falling out, just bad, and they can't get their levels right and it's been almost 8 months! They feel like ****. I don't feel like ****, do you? you will if you have it, and forget Graves eye disease, it'll get WORSE and if your doc doesn't say this, he's a moron. Read up on Elaine Moore, she had it and regrets it, she wrote a book. If you were on that drug you say you were on, it might go away by itself, that causes it sometimes, I've read! The doc on here will tell you more, I hope.Good luck! What dose are you on? and what were your lab levels, free t 3 and 4 and antibodies(tsi)?

[goldie44]

Thank you for help!!!!!!!  My hunch has been to hold out on doing radioactive iodine.  I certainly wouldn't do it without another 24 urine for iodine.  It has been well over 6 months I have been off amiodarone.  I had hyperthyroid levels on the amiodarone and really no symptoms for quite awhile.  If I have my labs drawn monthly, is it going to show when i'm gradually going one way or another or could everything be fine 1 month and then suddenly I'm hypo or vice versa???  I can't say methimazole is the best for me as I do have rashes and joint pains that are not there when I've been able to go off. But, I'm willing to stay with it for awhile.  Also, my endocrine always says she is going to watch me closely but that hasn't really happened and in sept took 3 weeks to get my results.  I've been requesting my results as I don't feel I've been managed well, even though I like the doc. I don't enjoy flip flopping.  Also, if my graves anitbodies were elevated when i was hyper but they start normalizing when my thyroid starts normalizing, what does that mean??? Thank you in advance for your help

[goldie44]

Thank you for your post.  I have been hearing and reading the radioactive iodine causes more problems with the eyes but I don't have the lid retraction or proptosis so I have never figured out if my eyes are mild and may not be much of a problem.  I am holding out on the radioactive iodine based on all i've heard and read.  I feel good when my levels are normal but bad when i'm hyper or hypo and i have flip flopped a couple of times.  Not fun!!!!!!!!!!  I don't know what my levels are i don't have them in front of me but I'm on 10mg of methimazole.  i have adjusted some on my own too as endocrine isn't always good about managing it.  She doesn't really say anything when I do this.  Thanks for your help.  I appreciate it.  Goldie

[GravesGirl]

hey goldie,
If your Graves starts to get better(levels of free t-4 stay euthyroid) and your tsh comes back,then you have a good chance of remission. The test for tsi will show if the meds have lowered it.if they are at 30 or 40 percent(I think I read) then your chance is very good. I'm hoping to have mine tested next time. You're lucky your doc doesn't read you the riot act if you lower the dose. I hardly did, but he's an old-fashioned kind of controlling man .I guessed that at my first visit, with all the signs he had around the office. He also has HARD wooden benches to sit on in the waiting room...how inviting!

[pjgovitz]

I'm not sure what group you are on, but I'd like to say before my RAI the joint pain was incredible, along with fatigue, severe mood swings , my muscles were so weak I could hardly walk to the mailbox, while RAI is not appropriate or desired by all...it is a miraculous drug that there are many plus sides to. Chances are that many having trouble now are having trouble due to their disease and not an effect of the RAI...It has greatly improved my life and lessened the pain I previuosly was in. As far as my eyes there was no difference before or after, they still get puffy on some ays no worse than before.

[Duchess47]

I was diagnosed with Graves 6 years ago.  I am still taking Tapezole and have gotten conflicting advice from 2 very well known well respected endos. in my area.  One says stay on meds.  the other says the meds. are bad news to take long term.  I have a lot of symptoms even with thyroid normal.  I have been in remission twice and off the meds for over 1 year each time. But then go hyper again.  It's a frustrating disease especially when there are so many conficting opinions out there.  I have heard that hypo. is easier to keep under control than hyper.  I, myself keep putting off having the RAI.  It seems so final and have heard so many horror stories.  It is probably inevitable, but living in denial works for me.  LOL

[GravesGirl]

WOW I've never read a success story for RAI, I guess that's good news... I'm glad it worked for you. I have a mild case and don't suffer like that. I'm being controlled on a low dose right now.I read so many horror stories about RAI, maybe the docs aren't managing them right after, usually they say the joint pain is worse, and they felt much worse than when they were hyper.

[Mark Lupo, M.D.]

There are tens of thousands of patients who have done very well post RAI -- the reason we don't hear about them is b/c there is a tendency in human nature to report bad news preferentially over good news.

That does not mean RAI is the best choice for hyper patients, it simply means that it is potentially a very good choice for many.

Goldie -- decreasing graves antibodies is a good sign.

[GravesGirl]

you're right doc,most people aren't on these boards unless they're sick and looking for answers.There's just so much info to sort through out there, and also personal experience.

[goldie44]

Thanks for the info, it has been helpful

[goldie44]

Thank you for your post.  Would you mind giving more info?  How bad are your eyes and did you go on steroids for the RAI ????  Do you think it is easier to regulate the thyroid since the treatment???  I appreciate your post.  Endo and Cardiologist urge me to do the RAI and don't mind doing it if know I'm going to feel better after etc.....  Thanks again

[pjgovitz]

Hi Goldie,
My eyes weren't bad before , sometimes they would get puffy and water. Before treatment for a time I looked like I was  over-cafinated they were wide, but not bulging.  I didn't go on steriods, but many have. My eyes now areokay,for a short time after RAI theywere dry and burned a little, I used otc drops about 4 times....my case is a bit different because I had hashitoxicosis,,,primary Hashimotos secondary Graves, so I would rapidly swing between hyper and hypo, and my thyroid would not shut off, autonomously dumping thyroid hormone , that's how my dr described it, since RAI i doesn't dump on me causing  those "little storms" that felt more than little for sure, I lost a gretadeal of weight along with heavy tremors, a strange and fast heartbeat, pain in my joints and muscles. I've been on synthroid a very long time(18 yrs) , only going off pre-RAI and for 3 months when I was over-corrected while being in a Graves phase. It took a long time to get the proper diagnosis for me, as my TSH would change rapidly, and my reg dr only was checking me once a year, I didn;t know what was wrong, I thougt it was fibromyalgia and stress, soI suffered until it got really bad, finally getting into an endo...the story is so long, but for me RAI was a blessing, I go for labs again this week, since RAI my dr is slowly increasing my dose, I was still hypo 7 weeks ago, and haven't went hyper since, the pendulum has slowed way down I don;t swing back and forth, and I hate the feeling of being hper, hypo I deal with better, and with the slow dose increases it's not shocking my system . Like Dr Lupo stated not the right choice for everyone, I'm 43, not having any more children, anti0thyroid drugs were not a choice for me, as I needed synthroid...they would've had to block and replace, I was on a beta blocker for several weeks and synthroid, now just on synthroid. I would've had surgery, but am glad I didn't, but it is an option, my friend suffered more with calcium levels afterward and my stomache hates calcium supplements, and that would've been miserable for me, I get calcium from my foods. RAI itself was pretty uneventful, we don't get high doses like cancer patients, I wasn't sick, I took the pill came home had a coffee and lunch, and hung out in my room for 4 days watchin gtv, talking on the phone, reading, and napping. I had nightsweats for two weeks afterward , but they resolved in time, I was having them pre-RAI too , but they were just heavier for a time afterward. For feedback from others who had a good experience with RAI google RAI MSN Graves Disease...you have to join like here, but there's a ton of helpful information. And as Dr Lupo also stated there are tens of thousands who had it, you don't hear from them because they are well and are no longer looking for help, not posting anywhere you don't hear from well people...I'm still around the forums (mostly the one I told you to search because i've made friends & give support, I still have ssome issues, but I've been told it can take a year after TSH to be stabilized for the body to heal, I think I suffered some muscle damage due to Graves that will take time, it is slowly getting better. Hope some of this helps, and whatever treatment you chose, I wish you a healthy life....
Pam

[goldie44]

[goldie44]

Thank you Pam for telling me your story.  I tried to join that forum but was turned down as I didn't get to respond to the manager's email within the 24 hours she requested.  Plus, she made it sound like you have to post regularly, which I don't mind, but I don't always have time to post.  Anyways, more questions.  I have wondered if I have hashimoto and graves, i have flip flopped rather quickly at times. I am thinking I wasn't positive for the hashi antibodies when first diagnosed.  weird thing is, before i ever saw an endocrinologist, my labs initially made me look hypo and they put me on synthroid.  Then I did go extremely hypo, god it was awful, it was in apr 2006 and went off synthroid.  didn't feel hypo or hyper after stopping, didn't feel bad either way.  saw endocrine in july and diagnosed about august of 06  I was somewhat hyper when i saw her and then by sept my labs kept changing, making me more hyper altho I wasn't exhibiting any major symptoms.  that is a puzzle to me.

Anyway, more questions. alot of these people on this one forum warn everybody that goes there, if you have any eye disease whatsoever, don't do radioactive iodine.  and most are so against goiing hypothyroid from radioactive iodine.  You say you feel much better and not all this flip flopping back and forth after.  Do you think many people experience less flip flopping and it is much easier to manage after rai?  If that's the case, it seems like it would be a miracle drug.  And I do have to wonder as you said, perhaps these people who have had problems with radioactive iodine had them before the treatment.

Did you have hypo symptoms after rai and if so for how long?  How often do they check your labs and how often do you increase the thyroid med?  Thanks in advance.  Sheryll

[pjgovitz]

Hi Sheryl,  try again to join, it just keeps the spammers out, I will let her know. You only have to make a brief post once a month to stay on, but it is well worth it. I'm still hypo as of my last labs. My Dr (endo)checks me every six to 8 weeks now, I'm due for labs tomorrow. Personally I deal with being slightly hypo much better than hyper. My dr only increases my dose by small amountsto prevent me from being "over corrected" as my old practioner gave me way too much and I was in rough shape for a while. Some on our forum said it helped with there eyes, but I think it can go either way...please try joining again others will have better information for you on the eyes. The flip flopping so far has stopped, the wide emotional swings have stopped, having too many periods have stopped, the extreme weakness and fatigue has stopped, the extreme hunger has stopped , although I still cannnot skip meals, my blood sugar levels are better , there are so many things that are now better, I haven't gained too much weight I'm about where I was before I went hypwer the last time, although I did like wearing those tiny clothes LOL...it wasn't worth being hyper , I had lost about 20 lbs in a month..I'm at 135 now, what I've weighed throughout most my adult life when my thyroid levels were stable....This disease is frustrating anyway you go, but it becomes managable and you eventually get your life back where it is enjoyable again with treatment, no matter which you chose. I don't want to sound like  a RAI spokesperson, it just was the best choice for me.
Pam....ps don't forget to try and join again.

[icudoucme]

I have had Graves for sometime now, about five years.  I had RAI, and had no eye involvment.  I had no issues with Graves, or even keeping my levels within normal for several years after RAI, BUT now I have had sever eye involvement, received radiation, and did steriods for it.  The treatment wasn't all that wonderful, as it really didn't help for my eyes.  I myself would be more likely to do one thing over again if I could.  When I was Dxed with Graves I didn't get the information about what meds could do, and so I never gave them a chance to work, I took RAI before I really knew what choices I had.  I would of done meds for awhile, just to see what it would have done, but now since RAI, I can't say that RAI had any effect on anything other than my thyroid going hypo!  I can say yes we all have our bad stories, and I myself do as well, but not about RAI.
Valarie