[DillonM]

#1060402

So I was diagnosed with Graves a year ago this Tuesday. My levels were about 3x higher than normal. So I was put on one medication, I can’t think of the name and broke out in a rash. So I was put on PTU and broke out in hives. So i made the decision to go with RAI. I took that in June of last year. February this year, I went back to the Endo and the levels were 3x lower then normal so I was put on Levothyroxine.

I also asked my doctor what would happen if my levels went too high again since I was allergic to the medication and she basically completely danced around the question so my first question is. What happens if my levels go back up? What treatment is done when you can’t take the medicine?

Second question she couldn’t give me a clear answer to is: what exercises are best for post RAI? Are there certain exercises for when the levels are low vs. high?

Few other things. I’m a 27 year old guy. Before being diagnosed, I wasn’t too active. I just stayed on my butt all day smoking cigarettes and playing video games and drinking either coffee or soda. I’ve always been skinny, never gaining more then 189 lbs. When I was diagnosed I was down to 157 lbs. I never had a problem with energy, meaning I was never required to take naps during the day, but I sure take a lot of naps nowadays.

I’m currently talking to my doctor about taking chantix to quit smoking. What other tips would you suggest i take?

Thanks

[Kimberly]

#1182423

Hello and welcome! The primary concern with exercise is to avoid strenuous activity while hyperthyroid. Definitely check back with your doctor for more specific guidance, but calmer activities like walking and gentle yoga are more appropriate when hyper, as the heart is already working overtime – you don’t want to stress it out further!

For patients who go hyper again following RAI, you could do another dose of the RAI or have the thyroid surgically removed. Anti-thyroid drugs are also an option, but it sounds like you have already had a bad experience with both ATDs.

Hopefully, others will chime in with suggestions on quitting smoking, but this web site is a nice resource that might also be helpful: http://smokefree.gov/ Smokers are at higher risk for thyroid eye disease, so you definitely want to make this a priority!

(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

Take care!

[gatorgirly]

#1182424

We also lose muscle mass when we’re hypER, so as long as your levels are normal or even slightly hypO now, you should be able to get clearance for physical activity. You want to start building up your muscle mass. It’s really hard to get active after RAI – I know this first hand (I was 26 at the time of my RAI). But once you get into a routine, it WILL give you more energy. You’ll be more awake during the day and sleep better at night.

Now that you’ve had RAI, the chances of you needing to go back on anti-thyroid medication are slim. Most likely, your levels will only fluctuate slightly and your endo can lower your levothyroxine dose to get you into normal range. I had RAI three years ago and we’re still playing around with my dose (but I’m not the norm).

I can tell you that for the first year after RAI, I exercised my rear off working with a personal trainer. But the scale didn’t budge and neither did my waistline. So I gave up for a year. Then I started making drastic diet and exercise changes – far less processed food, fruits and veggies with every meal, less red meat, and a varied exercise routine. Some days I do plyometrics, some days I do yoga, some days I putz around different machines at the gym, and most days, I run. It’s finally giving me back my muscle mass and helping me lose the Graves’ belly. I honestly don’t think there is a difference in what you could or should be doing now versus before you had Graves’ – except of course less sitting around playing video games, smoking, and drinking caffeine

[MAlstrin]

#1182425

To answer your first question about what to do if you go hyper again, just like Kimberly said you can go for another round of RAI or get your thyroid surgically removed. I know for me after a little over a year of getting my RAI my thyroid did go hyper again and I did go for another round of it, now im completely hypo. It took around two years of playing with my levothyroxine dose to finally get me into the normal range.

As for your second question about the weight management and exercises, a proper diet is the most important thing you can do to offset the weight gain caused by the thyroid. Even to this day I am struggling to get my BMI down. I have always been a stocky guy but I go to the gym on a daily basis and run 4x a week. While my BMI and weight are not changing my strength, stamina, energy levels are all amazing now. I am running marathons, lifting more weight then ever before and feeling great even tho I am still a bigger guy.

A little about my story, I was diagnosed graves at 18 weighing 180lbs at 5’9″, got my first round of RAI 3 months later weighing 140lbs. Shortly after I shot up to 210lbs, a year later I went hyper again and dropped to 170lbs, I received my second round of RAI and now I am 230lbs but in the best shape of my life. So even tho I can’t get the crazy six pack and I’m big, the key is to keep at the diet and exercise but have fun with it and you will see great results.

Good luck and remember your not alone in this.

[Msrj43]

#1182426

Im a 43 yr old female, and I basically have the same worries as the gentleman above. The whole idea of a Graves belly really kind of freaks me out. Im a former Marine, so I am use to being very active and fit. I was diagnosed with Graves in 2011. I am now on methimozole, for the thyroid and metropolol for blood pressure and furosemide used as a diuretic. I am also taking One a day womens vitamins plus iron, because I am anemic due to large fibroids, (heavy bleeding), and Im trying fish oil to see if it helps with the muscle fatigue and pain.
Weight gain this pass year has been a major issue. I went from 160 to well over 200 lbs. and its like the weight wont move!!! its frustrating, depressing, and embarrassing. Also since I am currently hyper….I can exercise the way I would like because of heart strain. As a Marine I am trained to push through pain and fatigue and get to the next level. However doing this ended up with me in the emergency room emitting two of the three enzyms that indicate a heart attack. Scared me spitless. So how do I get pass this? Anybody have any ideas? I am sleeping better now but there was a time I would be up for 3 days. when I cant sleep I take a natural sleep aid. cant remember the name at this time. (smh) that’s another thing my short term memory is all torn up. Anyway any and all help is much appreciated.

[Kimberly]

#1182427

@msrj43 – Many of us with Graves’ are type A personalities and high achievers, but this is definitely not a time to push through pain…it’s super important to give your body time to heal.

I have also struggled with weight issues post-Graves’ and I *know* it’s frustrating, but the #1 priority right now needs to be getting your levels to a place where they are normal and stable. Hopefully, you are getting regular testing done, with meds being tweaked as appropriate. Also, it’s important to make sure your docs are testing Free T4 and T3, and not just TSH. TSH can remain suppressed for quite some time in Graves’ patients, so relying on this alone can result in T3/T4 plummeting into the hypO range. Once you get to a point where levels are normal and stable, you can gradually start increasing your activity.

Hopefully, you have a doctor who is taking your concerns seriously…if you might be interested in getting a second opinion, the “Looking for a Doctor” thread in the announcements section of the forum is a good place to start.

Take care!

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