[McNamee11]

#1068213

Oh and if it helps….
My throid is 3 times bigger than normal
My uptake on the test was 58%
And I am producing over 3X as much T3 as I should be

[elf]

#1068214

This question usually causes conflicting responses, – because there are people who can swear by any of the treatment.

If a cancer patient was asking, what he/she should do, a surgery, radiation, or medications. The answer is – it’s what the patient thinks would be the best for him/her, after doing research. So research, research, research.

(I did RAI, and I like it made me feel healthy, but there are people who like the med route, and people who had surgery). Go with what feels right to you, – something that would be the least likely cause of the "I wish I didn’t do it" feeling.

[ely2009]

#1068215

Trey,

I was diagnosed in March of 2009. I began methimazole at a dose of 5mg/daily. I noticed improvements within 3-4 weeks. It was probably 3-4 months before I felt "normal" most of the time. I still don’t feel perfect everyday, but I’m trying to be patient and give my body time to heal. I didn’t have any side effects to the meds and my endo watches my liver function and white blood cells closely. So I guess – so far, so good. I know it’s not ideal to be on meds, but I thought I’d try it before doing something else. There really is pros and cons to every treatment. I’ve learned alot from other people on here about their choice of treatment. Keep reading and make an informed decision – it’s your decision. And even if you decide on RAI eventually, there are people who take meds in the meantime to give themselves time to feel good about their decision.

Another good thing about Graves -there is no straightforward, works for everyone, "best" treatment. ” title=”Smile” />

Emily

[runlacie]

#1068216

Hi Trey! Sorry to hear your news but fortunately we are very treatable whichever route you decide on. I guess you’ve noticed that a lot of that weight loss is your muscles just fading away. I was in marathon shape (having just unknowingly ran one with the beginnings of Graves’) when I was dx’d. I did rai because I thought it would be the quickest way back. Unfortunately, I had to wait a long time (I still do not understand why) for my rai, but then I did improve quickly after that. I was diagnosed at the beginning of June, had rai on 7/20, and now not yet 2 months later am feeling the effects of hypo though I have not clinically gone hypo yet. I was not able to run while I was hyper because my HR went too high, but I did continue walking about 35 miles per week and also continued with lifting and core work. My muscles still died, for instance, I regularly did 100 pushups pre-Graves’ and that dwindled down to 50- but I have since added back to 75 again. In my Graves’ adventures, I have found runners who did well either way, rai or ATD’s. Also, on this board are men (you are much rarer), who have had good results with each treatment. The only reason I am not 100% satisfied at this point is that I still think maybe I would have been back running sooner had I tried ATD’s right off the bat rather than waiting almost 6 weeks to do rai. But it sounds like your doc is right on top of things and you could get back to your normal routine a lot sooner. With the ATD’s I was mostly afraid of the side effects. Even though they are very rare, I am something of a hypochondriac and just knew I’d be freaking out at every little thing thinking something bad was going on. With the low percentage of remissions, it just wasn’t worth it for me to try. Much easier to go take my one little pill and wait for my thyroid to die. All you can do is continue reading all you can and make your own decision. There’s really no one size fits all right or wrong and it seems to be something of a crap shoot no matter what you do! Good luck and keep us posted.

[McNamee11]

#1018973

Hello:

I found out last Wednesday I have Hyperthyroidism and Tuesday this week it is Graves Disease. The specialist I saw without discusion said we would do the radioactive iodine treatment. I did not think twice about it because he is a specialist. However since then I have heard many stories not recommending that treatment. I would like to hear your opinions, particularly if there are any health care professionals that can weigh in.

My Stats
Male 27 years old Height: 5′ 10" Former weight 165-178 Current weight 146 (and falling)
I am/was in very good shape and workout everyday weights and cardio.
I have no other health complications.
Hyperthyroidism runs in my family, fathers fathers side only.

The Dr. wants me to take the radioactive iodine this Tuesday, I need all the info I can get before then.

Thank you,

Trey

[McNamee11]

#1068217

Thank you all for sharing your experience and information you posted. Its funny because as I start to settle on RAI I read something that makes me shift towards ATD and so forth.

One reason I am leaning away from ATD is because I tend to get sick easily and am concerned about lower white blood cell counts. I also have read that many times it doesn’t work or takes alot longer to work and iron out problems/doses. I have also heard that RAI sometimes can be given to reduce your thyroid activity rather than entirely kill it and think I would like to give this a shot.

RunLacie:
The reason I found out I had Graves was because of strength loss. My weight has always flucuated based on how much protein I am getting and how hard I am hitting the weight versus running/cardio. I workout everyday and was preparing for a lifting competition and noticed extreme drops in strength despite working out regurly. Based on the results I probably would have won the competition but now I am at the point were I can’t even bench press my body weight 10 times. I also won my age group in a 5K in late July and now I can barely mow the lawn without getting tired and my muscles aching. So I definately hear where you are coming from. I am now 32 pounds liter than my peak weight and there was no fat on my peak weight so like you said I have literally watched muscle fall off my body daily.

[Ski]

#1068218

Hi Trey,

You probably will have found this info already, if you’ve been wandering around the bulletin board, but I just wanted you to know that the theory that we can take "just enough" RAI to "control" the thyroid hormone levels has been tried and has consistently failed. The reason is that any surviving thyroid tissue has the potential to react to the antibodies and cause hyperthyroidism again, given the proper "request" from the antibodies. The antibodies mimic TSH and trick the thyroid into believing the body needs more, more, more thyroid hormone, so the thyroid cells work as hard as they possibly can to follow those instructions, and ultimately that results in hyperthyroidism again. In addition, a dose of RAI insufficient to destroy the entire thyroid has the potential to damage, but not destroy, thyroid tissue, which can be dangerous in and of itself. Damaged cells behave irrationally, so it can be tough to manage thyroid hormone levels when *some* cells remain active.

I had too little RAI on my first dose (10 years ago ~ thought it’d be my ONLY dose, but no), because the dosing doctor still felt it was possible to do "just enough." Instead, I ended up with my endo recommending ATDs in the same protocol as if I’d chosen them in the first place (1-2 years to attempt remission), which was what I was trying to avoid by doing RAI. Ultimately I did a second RAI that did the full destruction, but I suffered for a couple of YEARS trying to "wait it out, let the thyroid die on its own," when I could’ve been healthy instead for most of that time.

If you’re going to try the medication, you can "undo" that decision, so that’s typically what we recommend, at least to start. Some people react badly to the medication, or have a tough time maintaining normal thyroid hormone levels, and so eventually those people must choose another treatment method. Some just decide they don’t like how they feel, or don’t want to deal with the process required to make ATD treatment work for them. Some have a VERY easy time of it on ATDs and continue taking them very long term. Some attain remission and can stop worrying for a while ~ of course, that’s after at least 1-2 years of taking the ATDs, but remission is remission. If you try ATDs and decide they’re not for you, the best choice is to get rid of the thyroid completely, whether it’s by surgical removal or RAI destruction.

Remember that you’ll need at least six weeks after you begin ANY treatment in order to start feeling much better, because it takes our bloodstream that long to flush out excess thyroid hormone. Patience is required in all things Graves’, that’s a fact.

We’re so glad you found us! Let us know how it’s going, and feel free to ask any questions you may have. We’re here to help.

[npatterson]

#1068219

Trey, Send me an e-mail : "nancyngdf@bellsouth.net", and I will send yhou an excellent handout about all three treatments, with pros and cons for all. Something to remember is that the people with Graves’ that are doing fine are NOT on the Internet. That goes for all three treatments. You can also research information at these sites; http://www.AACE.com; http://www.thyroid,org; The Endocine Society (you will have to look it up), and http://www.Mayo.org. Those are all reliable sites.

Good luck, and take care,

[Hopeful23]

#1068220

Trey,
Im 24 and chose the RAI. MY thyroid was LIKE 8x its size and I was VERY sick. I had RAI done may 12 09 and became hypo july 22 09. My dose was 14.6. If I had to go back and do it over I would still choose RAI. I had ZERO complications and am sooo much happier and better. I am back to work, school, & life in general. It takes time and strenght but I wish you the best of luck in your journey. Do what you feel is best for you!!! Go with your gut, it never stears you wrong!

[James]

#1068221

Trey,

Your specs are quite similar to mine. 5’10”, range in weight almost identical I top out close to 180 and bottom out as low as 165 depending on the exercise regimen I am engaging in. With more weight bearing exercise, I end up at the higher end of the scale. I am presently 174 and feel healthy and fit. Upon diagnosis my thyroid was grossly overactive (according to the Dr.). I resolved from the outset that ATD’s were the way I was going to go even though my endo was leaning toward RAI, he had no medically compelling reason to preclude me from going on them. I was resolved to do it and determined to achieve remission against all odds. I was willing to accept that there was the possibility of side effects, but determined to wean off to as low of a maintenance dose as possible. That was my mindset and I was sticking to it. For me it was never a problem, I bounced back quickly, encountered a couple of set-backs over the years along the way, but recovered quickly. Good news for me was that any setback had a quicker recovery time than the previous set back. In part due to the fact that I was much better in tune with what was going on in my body and became much more proactive in my approach. It bothers me anytime a patient isn’t properly briefed on all the treatment options. I’m glad you found this site.

Just as an aside, I would suggest that you take a close look at any supplements (if any) that you may have started prior to the onset of GD. Although all of us with GD already have a genetic predisposition to the disease, there are also some supplements that may have the potential to trigger the disease. I was taking a product prior to my diagnosis that, although I can’t prove it triggered the disease, I was always suspect of the product and discontinued it’s use “just in case”. Since then I have become very wary of any supplements and try to stick to whole foods only with a proper vitamin regimen.

Keep in mind everyone’s Graves’ experience is different. If I had significant problems with the ATD’s, I of course would have looked for another medically acceptable option. There simply wasn’t the need for that in my individual case.

Take care,

James

[mamabear]

#1068222

Nancy Patterson wrote:Something to remember is that the people with Graves’ that are doing fine are NOT on the Internet.

Giggle giggle giggle…. except me! lol

I wasn’t going to post because I truly don’t want to confuse you. I would be wrong not to post though so here it goes… I only want you to understand that I am a what I consider "one of the lucky ones". So please take ALL of the information you get to heart and make an informed decision for what is best for you and your life right now. Everyone on here is great when it comes to support!

I don’t usually start this way but to help you understand that YES I can understand what you are going through to a point, i’ll include something I usually leave out when I post.

I was a basketball player 4 yrs of high school, last 2 years I was also volleyball. I worked out every day in the weight room, was 185lbs of muscle at 5’8". I was a young 17 yr old when I graduated high school. So right out of HS i worked for a Veterinarians office. Long story short, after a year working there I was bit by a kitten that happen to have rabies. It was 3months before I was to be married. I lost 6 inches off of my dress and went from a good 185lbs to 130lbs on my wedding day. I was thin and it showed but I hid it well. My mom always complained that she thought I had a thyroid issue but after the kitten she blamed it all on the rabies. (yes i did go through the shots and the shots are what made me loose the weight, i had a terrible reaction to the shots).
There I was this pretty, didn’t have a care in the world girl that was built like an eighteen wheeler ready for anything all withered and not herself. It was hard to deal with it……. I get the frustration that you must be going through regardless of how I got that way back then and how you got this way now.

I do have Graves’, but that didn’t show up till much later in my life. I say I am lucky because I too thought why RAI? Long story short, I chose to do PTU it was the better choice back then for me since I wanted to get pregnant as well. THey figured that if I got pregnant I was already on PTU so i wouldn’t have to switch from Tapazole to PTU so just go with the PTU right from the start. DR. told me it would be a long time till I felt better and there was a chance that it wasn’t going to work at all and would take a long time to work if it did.

It worked within a few months my levels were normal. By a few months after that i was told to try to get pregnant and with help i did, a few months into the pregnancy I went off the PTU due to levels were going high and my body took over so i didn’t need the meds.(they feared that I would miscarry if I stayed on the meds).

Anyway I was able to get pregnant with another baby and I was still off meds, then I had to go back on them because my levels went all crazy again. I did that for a short time and again my levels were good and off the meds I went. It did happen again once but it was a short med dose I did and yet again was doing well and went off and did fine. It has been 27 months with no meds at all and I am fine. I get checked regularly and although I am tired and cranky on days it has nothing to do with Graves’ and everything to do with now a total of 4 kids (one with 1st husband and in between the meds I did happen to get pregnant again).

So yes every person is different. THere is no cure for it so even if you fix it with meds or do RAI and are on supplement thyroid the rest of your life, you will always be a Graves’ patient. THe best for your is always up to you not a dr. who doesn’t give you all of the facts.

I have my kids and if I wound up having problems with my thyroid that I just couldn’t control I would have said a few years ago never would I do RAI, but having the support here and knowing what others have done and are going through now, I would say yes I would do RAI IF i needed to. I thank God I don’t have to right now and if I go down that road again then we’ll see.

Talk to your dr., you don’t have to go there on Tuesday and get it done. Just make an appt. and talk to him about what you have learned. You clearly are able to be your own advocate, you are a body builder! There is no doubt that you are your best advocate for your body. You know it best, treat it the best and trust your instincts the best…. Don’t forget that!

[kim3]

#1068223

HI there,

I am all for trying the ATD route first. You can always change your mind and opt for RAI later. Why destory your thyroid if there is a chance that you can heal it and go for remission?

ATD therapy does however require that you understand what your hormone levels mean TSH, FT4 and FT3, and how they respond to the antithyroid drugs. You do need to monitor your progress with regular labs of the above hormones to make sure you are on the correct dose of antithyroid drugs as it will have to be adjusted in the first few months. This is not rocket science and I really believe that it should be the first line of tratment for most cases. Like I said why kill off your thyroid if it can be saved and eventually functiuon normally??

My personal story with Graves is that I was diagnosed about 3 years ago, and was very ill with it as my Ft4 and FT3 were very high. I opted for ATD therapy after looking into RAI and surgery. I actually cancelled my RAI appointment a few days before it was to happen, and I am really glad I did. It probably took me a year to get stable on the antithyroid drugs(Tapazole), and it would have happened much faster had I understood how to properly monitor my labs and progress.

I have been stable now on a low dose of tapazole for about 2 years now and feel great. However, I do have a nodule and am considering surgery at this time. For me RAI was the wrong choice all the way along. I did the right thing for me… ATD’s and now probably surgery. Had I done RAI, I still would be needing the surgery right now because of a nodule.

I am sharing this story to hopefully suggest to you to keep treatment noninvasive at first. I think that ATD therapy is becoming more popular as the remission rate is actually quite good.

Hope this helps.

[Author]

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