[Anonymous]

#1077222

Hi annora,

You may want to ask for a referral to a physical therapist, so you can identify the weak muscles and build them up safely while you get back to your pre-GD fitness levels. We had a speaker at the San Diego conference who climbed Everest after GD treatment, so I would say that it is POSSIBLE, though he did say that training for that climb was particularly harrowing. The difficulty lies in the muscle-wasting that may have happened while you were hyper, and then in the varying levels of energy/”wellness” that you will feel throughout the period until your thyroid hormone levels are normal, and stable, again.

It’s likely to be slow going, but with your determination I am SURE you can do it. Once you’re there, you’ll know what to do to maintain. IT WILL BE A WHILE. Count on that. You need to reach normal thyroid hormone levels, and then stay there (could be for months) before you really, truly feel well.

More later (must go to a meeting),
Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1020447

I was diagnosed w/Graves in November of last year; I was unable to exercise (run) for approx. 5 months. I am a competitive runner, so it was quite a frustrating situation. My thyroid was ablated earlier this spring, and – while I am still waiting for supplemental thyroid hormone – I have been able to start a new running schedule. But, I am so, so tired, and, I have a lot of joint and muscle pain (far more so than is typical after a training run). My endo. is not very helpful in this instance, as he associates all of my discomfort w/exercise – I’ve been running long enough to know it isn’t normal!

My question(s): Will I be able to train as effectively as I once did, after I receive supplemental hormone? I’ve heard rumours I will never be as fast or as efficient. Apart from typical loss of fitness, will my thyroid problem create even more difficulty getting back to my pre-diagnosis fitness level?

Thanks.

[Anonymous]

#1077223

Hi…if it’s any inspiration, and it should be…Gail Devers has Graves’ and went on to win a gold medal after her radiation! I try to think about that when I get really frustrated.

And I can definitely sympathize. I was back up to running 2 miles 3 times a week and improving my time when everything backfired again and I’m back to walking, lifting very small amounts of weight, and being sore for days afterward. I feel like if I’m in the gym and staying active at the best level I can do for that day, I can’t really expect more than that and keep frustration from eating me alive. I’ve also started taking glucosamine and chondriton supplements to help joint pain.

Good luck. It’s a psychological battle as much as a physical one.
Try to be proud of yourself for what you DID do that day. It’s not easy. My boss asked about my workout today and before I could stop myself I blurted out “pretty lame.” I need to practice what I preach!

[Anonymous]

#1077224

Thanks to both of you for your comments.

As fabulous as my exp. with Graves’ has been, I don’t think I’ll be winning any gold medals (at least, not in distance running)… Maybe I’ll switch to something with a smaller field of interest (cat herding?). My return to exercise has been slow going, and I should realize I will continue to encounter difficulty… So frustrating, but I suppose things could be worse. I should be pleased I can even run 3 to 4 miles per day.

I have scheduled a “2 hour run” for today… regardless of whether I end up walking part of the distance.

-annora

[Anonymous]

#1077225

I’m now 13 years post RAI. While I’m only competitive with myself
at the moment, I’m an avid mountain/road bicycle rider and I’m
trying to take up running. It’s really hard to drag myself away
from my bike seat though! I started riding not too long after
having RAI and it has become my life’s passion. Anyway, I’ve
continued to gain muscle over the years. They are now above and
beyond any muscles I had pre-Graves. I still have days when a
workout makes me really sore and it seems to take days
to recover, but other days, the same workout doesn’t phase me. Go
figure! My TSH levels have almost hit a dead stop on fluctuations
after all these years, so I’m beginning to think the sore days have
more to do with my getting close to leaving the thirty-something age
bracket in the dust than Graves related. Anyway, just hang in
there! Your body has to rebuild itself, but it’ll happen.
Unfortunately, the biggest lesson I had to learn with Graves was
patience, but don’t forget persistence eventually does pay off too.

Wishing you the best of luck,
Sheila H.

[Anonymous]

#1077226

Hi,
I am a mother of a recently diagnosed 16 year old boy and I was struck by the similarities that you wrote about concerning your daughter. I hope she is doing well. My son will not join in with an online support group, but it helps me to hear some of what is going on. He has always been an incredible student and a good athlete and this year has been very tough. For the first time his grades have suffered some, he has lost a lot of weight and he has been unable to play sports. He has just started medication, it sounds like you are further along in the healing process, so I would be interested to hear if your daughter has worked through some of the problems associated with this.

[Anonymous]

#1077227

Hi, my name is Melissa and I was diagnoised with Graves Disease about two years ago, I have only been treated for 8 months now because I had to get second opinion becasue I was told the first time, that it was ok and it would correct it self. Well my doctor now put me on PTU because I became pregnant,and started treating me. I had all the symtoms, the rapid heart beat, tremors , sweating,enlarged gland,bulging eyes that wnet away, the only thing I didn’t get was the weight loss, which is to bad. anywyas My levels have gone back down to normal, but I still have the rapid heart beat, the tremors, I feel irritable, and still intolerable to heat. my husband and I still want more kids,but there was so much scare that went on with this pregnancy,we wanted to make sure everyting was normal to have a kid, so now were discussing treatment options, I have been given all three. I would like to know the after results of each,the radiation, the surgery, so fa rit looks like the surgery is the safest. I’m also concerned with the weight gain, I never loss weight,,before treatment and I certainly don’t want to gain weight after treatment. Is the weight gain an extreme amount? I’m really concerned with this because I’m al least 100 pounds over weight, I’d be really happy if I could lose 50 to 70 pounds of that, so you can see why I’m concerned with not gaining anymore. Any information would be helpful

[Anonymous]

#1077228

Hi Melissa,

I’m not sure how long your levels have been normal, but considering the amount of time you have been hyperthyroid, it is completely normal to continue feeling symptoms for a while. The truth is that hyperthyroidism is like a metabolic hurricane — it causes tremendous damage to the entire body — and getting to normal levels is really just the beginning of healing. The body needs normal levels in order to BEGIN to heal, and sometimes it can take months afterward for everything to feel truly WELL.

That said, it is also possible that, even though your levels fall in the normal range, they are not completely normal FOR YOU. The range is enormous, and for good reason — different people feel best at different points along the range. Unfortunately, many times our doctors focus on getting us within the normal range — and then they stop worrying about it. At that point, we need to be our own best advocate and keep asking about SMALL adjustments in meds to see if we feel better at a different point in the normal range. It doesn’t hurt to try, especially if the end result is that you feel VERY WELL.

I completely understand your hesitation about weight. Unfortunately, nearly all of the treatments CAN result in some weight gain, but you need to understand that typically it is GOOD weight gain. I know that’s hard to swallow, I completely understand, but let me try and explain. Even if you did not experience weight loss while hyper, your body may have lost muscle mass. Strong muscle mass in our body actually burns calories even while we are at rest, so losing that muscle mass wreaks havoc on our metabolism and keeps us from being fit and healthy. When that muscle mass returns, it is good news, and we just need to exercise it (at whatever level is safe for us) in order to strengthen it and allow it to do its proper job of helping to regulate our metabolism.

The BEST way to control weight issues is to make sure your diet is a healthy one — limit fats and sugars, eat whole grains and “good carbs” (nuts, fruit, vegetables), watch portion size, all the stuff I’m sure you are well educated on — and exercise regularly according to your doctor’s instructions. This does not guarantee that you will not have any weight gain, but it does guarantee that you will be your healthiest, best self at any given point.

The fact is that hyperthyroidism accelerates the metabolism, so slowing it down, through whatever treatment you choose, has the potential to end up in some weight gain. Being vigilant about your levels and keeping yourself from going too hypothyroid during ANY treatment will help to keep severe weight issues at bay.

Let’s see — a quick rundown of the three treatments, as I see it.

ATDs: With patients who respond well, a good first treatment. Remission can last a long time, in those who achieve it. A second remission is much less common, so after coming out of the first remission, it might be wise to look at the other two options. Anyone who has difficulty remaining stable on ATDs, or who has trouble attaining remission, would also be wise to look at the other two options.

RAI: Simple mechanics of RAI — take a pill (or drink a liquid), and the radioiodine goes to your thyroid and begins to destroy thyroid tissue. As the thyroid cells die, they release stored thyroid hormone, so the patient can experience a limited period (usually about a week or two after the dose) when they feel even more hyper than before. This may last a day or two. After that, it’s watching and waiting to see when you go hypo. It can happen quickly (6-10 weeks) or it can take a while (up to six months before every bit of the RAI has finished having an effect). I had to have two, because the dosing doctor didn’t agree with me and my endo about completely destroying my thyroid on the first try — he tried to give me “just enough” to make me “normal,” which did not work. That is VERY rare. If you are of a mind to use RAI, and you really want to just be DONE with it, make sure your dosing doctor is aware of that and will give you the correct dose to accomplish it. They do recommend waiting six cycles before trying to get pregnant after RAI, so that’s something to consider as well. There have been studies done, and children of women who’ve had RAI are not only NOT likely to have more issues than other children, but in one small study they were actually found to have fewer issues than other children. Once the patient’s thyroid levels are normal and stable, there shouldn’t be any fertility issues related to Graves’.

Surgery: Quickest possible way to get to “zero” and start regulating on replacement hormone. Of course, surgery does have its risks. Normal surgical risks, of course, plus the possibility of damaging the parathyroids (calcium regulators) or vocal cords. These risks can be minimized by doing some research and finding a doctor who performs MANY thyroidectomies (at least a few a month) with very low complication rates. Any doctor who won’t give you that very basic information is not one I would trust to cut into my neck. At one conference, we were told that ENT surgeons just “love” to do thyroid surgery because they think it is SO EASY, but it’s better to have someone who is very experienced with this one particular procedure.

Getting regulated can be the most difficult part of treatment, and it comes along with every form of treatment. I hope you’re not squeamish about needles, because you’ll need to have fairly frequent blood draws to make sure you’re on target. Keep in mind that once you are regulating thyroid replacement hormone (rather than ATDs) it is really smartest to wait at LEAST six weeks before having your blood drawn to test the effect of a new dose. I realize that makes time stretch out before you in a seemingly endless ribbon, but it’s the best thing to do for your body and your sanity. Testing any earlier can end up in wild fluctuations in thyroid hormone, which is just as damaging to the body as remaining hyper or hypo.

I wish you luck and I want to remind you of one thing — there IS an end. There IS normalcy in your future. Be patient, visit us often, and take care of yourself always.

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1077229

I have felt pretty good at the level of synthroid I am at for a couple of weeks, and decided to start going back to the gym. I am about a week into it I feel very lethargic and am starting to gain weight back, about 7lbs in the since starting back to the gym. Does anyone have an information about wether you should have blood work done again once you change your routine (i.e. start working out again). I was feeling fine and thought I had stabalized until I started working out, and I wasn’t trying to push things, because I understand it will take time to get back into shape.
Thank you
Destiny

[Anonymous]

#1077230

I have asked my endo that question because my exercise levels are very different summer vs winter (as many of ours are, I suppose). She told me that it should not make a difference (and there the explanation stopped).

My own — and distinctly amateur-based — opinion is that one week of exercise is distinctly too soon for there to be any dramatic, or verifiable changes in your TSH (and therefore your replacement hormone). It is also too soon for there to be 7 pounds of weight gain that could reliably be attributed to exercise. So I haven’t a clue what is going on.

I know it is frustrating. I also know that many doctors recommend that wehn we DO start exercising, it is advisable to stay off the scales for a few weeks: there CAN be weight gain associated with starting an exercise program, that will moderate out over time. This is due to muscle development (but, again, one week is too soon).

And, while it is possible that you don’t think you are pushing things, your lethargy might well be because you ARE pushing things. We can be left very weakened by hyperthyroidism. Extremely weakened. Any exercise similar to former levels — even gentle former levels — can be too much at first. I noticed that if I took things very easy I felt energized, not depleted. If you are feeling depleted, you may need to back off a bit, for a while. I was advised by exercise specialists at my local hospital to Be sure that I was not working the same muscle groups every day — to give them a two, or even three-day break by exercising other areas of the body in between. If you want to exercise every day, that is one way to try to protect from over-doing things. Some exercise can be done every day — walks for example — but anything that puts real pressure on muscles you need ot give them time to regroup as it were.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1077231

Hi, I haven’t been on here in a while, but I guess I should have been. I have alot of problems with exercise also. The last time I tried to, I walked 1 mile (not briskly at all), and then went in my back yard and did a little (I mean a little) kick boxing, maybe 5 mins (one song) and hula hooped to one song. When I came back in to watch a video for a class I’m taking, I could NOT keep my eyes open. I turned the video off and slept for 2 hours and was still tired after I woke up. I have been like that for quite some time. My former endo told me “people with Hyperthyroidism have an intolerance to exercise.” I haven’t asked my new dr. about it. I had a thyroidectomy in February and was started on 125 mcg. of Levothyroxine, now upped to 150 mcg because my levels were real low. I go back on the 16th, but am still feeling kinda down. If anyone can give some more info on this situation, please let us know!

Thanks,
Jamie

[Anonymous]

#1077232

I do not know how long you were hyperthyroid, but during that time you lost some muscle mass, especially the long muscles of the upper arms, legs and chest. I.e. you were weakened. As we regain, and are controlled at, normal levels of thyroid hormone, that muscle starts to come back. But one of the endocrinologists who spoke at one of our conventions described it as “mushy muscle”. We need to exercise to restrengthen it. What you are probably experiencing right now is the incredibly awful debilitating effects of being hyperthyroid, and until you can restrengthen the muscles, you will be much weaker than normal.

When I was recovering from being hyperthyroid, I experimented with “weights” that I could use for arm strengthening exercises. One pound weights were too heavy to be able to do 12 reps. I eventually found that I could use thin paperback books (and I do mean thin ones, a Nora Roberts’ sized paperback would be about twice as big as I could lift 12 times) for the exercises. I gradually worked up to regular weights, but it took time. At that same time I was evaluated by an exercise physiologist at a local hospital, to determine what exercises and how many I should do. He had this computer program that evaluated all sorts of different measurements. And he informed me that the reason that I felt so puny was that I had only EIGHT PERCENT of the strength of an average woman my age! He wondered how I had walked into the office.

We need to exercise — badly — after being hyperthyroid. But we need to be disciplined, organized, take baby steps, and listen to our bodies. If you wear yourself out with a set of exercises, they were too much, no matter how “little” your mind tells you they were. Back off, and try something less, then gradually build.

I hope this info helps.
Bobbi — NGDF Online Facilitator

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