[Bobbi]

#1063747

Hi, Marciam, and welcome to the Board. What you have experienced is the slow deterioration of our bodies that occurs while we are hyperthyroid. You used to be able to run long distances; now you are having trouble climbing a flight of stairs. It will get worse without completely effective treatment. Even SLIGHT amounts of hyperthyroid levels of hormone, over time, destroy muscle and bone. We lose muscle. We lose bone. It’s important to get back to normal levels of thyroid hormone, so that your body can start to heal.

As to whether or not you will be able to compete in April, only your doctor will be able to tell you. I know of one (although there may be more) Olympic track athlete who developed Graves hyperthyroidism, and was able to come back and compete in the next Olympics. But, of course, those are spaced out more than Boston marathons are. The thing perhaps you should keep in mind is that we do get well again, and the Boston Marathon is held every year. So, if it happened that this next one is too soon, perhaps the one after that would not be.

Wishing you good luck,

[marciam]

#1018286

Hi everyone. I was just diagnosed last week. Really depressing because i think the disease made me feel so good for a long time. I lost weight, i ate whatever i wanted, i had amazing energy, I was hyper and jittery but i like being active and getting lots done. I felt so good that i ran a marathon and qualified for Boston. In the running world, that is a huge and exciting thing. I postponed it last year due to a divorce and a slight foot injury. Then I was back on track, ready to start training again until this hit. My symptoms turned – whereas I used to be able to run a half marathon without breathing hard, now i’m out of breath when i walk up the stairs. And you all know what the rest is like. I am taking a calcium blocker to slow down my heart and methimazole. The doctor said I should feel better in 6 weeks. But here is my dilemma: I have to sign up and pay for the Boston Marathon in 2 days! The race is not until April and I would have to start training in December. Will i be normal by then?? Actually i don’t want to be normal, i want to somewhere in between my old me and my sick me. But will my heart be okay by then? Will i be able to run a marathon again??? Will I be able to run a marathon in April??

[marciam]

#1063748

Thanks Bobbi:
well, i made my decision after spending half a day in the emergency room because my heart was amping out all night long. Somewhere around 3 am i realized that i couldn’t just push through this. i have to let my body heal. So i’m trying to go a whole week without exercising – which is really hard for me. i won’t do Boston this year. unfortunately you have to qualify for Boston and who knows if i will ever do that again – i’m not getting any younger. Although last year, i was stronger and faster than i’ve ever been. That’s what i can’t figure out with this disease – i’ve always been hyper and energetic – i can get more things done in one day than most people can in a week, I like being that way. Will the medication take that away?

[Bobbi]

#1063749

I don’t think you should use the term "hyper" loosely. We talk about kids being hyperactive, for example — or "hyper" — and what we mean is high energy (among other things). It is one thing to have high energy levels. I have pretty high energy levels — and I’m fourteen years out from my RAI. And old at that!! Having "hyper" levels of thyroid hormone is something vastly different from having high energy. You can have high energy without having excess amounts of thyroid hormone in your system. In point of fact, having excessive amounts of thyroid hormone makes us tired: we cannot sleep; ALL of the body’s systems are racing too fast AND inefficiently at that.

I doubt that you could have been functioning as a racer at such a high level had your thyroid levels been too high. There’s some aspect of too much thyroid hormone that interferes with the quick recovery muscles need to keep functioning over time. An example from my experience might illustrate this point. I had been power walking with friends in the Spring of 1996. My husband and I planned a trip out West to visit national parks and hike. By the time we got there in July, I couldn’t hike — my legs just wouldn’t go. When I got back home, I had heart palpitations and a racing pulse, so my GP sent me for a thalium stress test (cardiac). After about five minutes on the treadmill, the cardiologist had to help hold me on the treadmill because my leg muscles gave out. All that, and I had been power walking three months earlier with NO problems. So I think you should expect to get back to "your" normal energy levels once you are regulated in the normal zone of thyroid hormone, and once your body has had a chance to heal.

[mamabear]

#1063750

I agree with Bobbi. Hyper active and HyperThyroid are two different species. I had a lot of energy as a kid. People thought I was on drugs, I swear! LOL I of course was not, I sure did have a lot of energy.
Being Hyperthyroid made me think at the time I was "hyper"Thryoid but that wasn’t the case. It was truly my regular energy level that was key, I was a basketball player, volleyball player, lifted weights in high school too. Didn’t get to go on the football team because mom didn’t want me ruining my smile that she just paid for !LOL

Being HyperThryoid made me different, my thoughts were racing, I coudln’t concentrate, I had this pounding in my chest. Funny, how I always tell people I had a "mild case" and now explaining it to you, I remember being so dang scared to death that I had no clue what was going on and all of these feelings were terrifying. I guess it was mild because I got through it better off than most people. But it was a roller coaster ride for sure.

Being competitive and determined can come to a crashing hault when graves disease hits. You have to remember one thing and you might not want to but WE all know here that there is no other choice. YOU MUST protect YOU! Your HEART is something that needs protection from this disease and you have to make that choice to do what is right for you. Running isn’t going to help your heart right now. I know odd as it may seem, since we all know running is great and keeps us in shape.

You are right in the sense of being as fit as you can be, you loosing weight and feeling great about yourself and being in shape is ALL YOU! NOT the Hyper part of Graves. Take that thought and get it out of your mind, it can confuse you and get you angry in thinking you want "that back". YOU DON"T want "that" back. You want to heal and get better and even if you never run a Boston, heck how many people can say they qualified for it!? That is a great accomplishment, that is something to be proud of!
Knowing that you are ill, you need to make that same effort and protect your body from harm. SPeak to the dr’s, get all the info you can, come to an agreement with the dr. about your treatment and stick to it. If it doesn’t work for you then change the game plan and tweak what needs tweaking.
If the dr. says no working out you are going to have to listen. This is not a disease that is forgiving.

This is a long road but we can all help !

[marciam]

#1063751

Thanks for your help. I’ve been reading some of the other posts too and it is all very helpful although some of it is scary. I haven’t run in over a week (which is really hard for me!). But i’ve been feeling better the past 2 days so i think the medicines have kicked in. I’m really hoping that the methimazole works so i can get off the heart drug. I’m going to the primary care doctor tomorrow and hopefully i will like her enough that she can be my point person in all of this – between the endocrinologist and cardiologist and whatever other ologists come up. I’ve been reading the other posts about stress and yes, i do believe stress is a big factor in this – in all diseases. I just went through a rough divorce (are there any easy ones?) and had a crazy summer at work. I just assumed my jitteriness and heart issues were just stress. Wasn’t until it effected my running that i realized that something was really wrong. Call me crazy- but i’m really hoping that i can wean myself off of the drugs eventually (okay, that doesn’t sound right!) Funny how it’s always the health, diet and exercise conscious people that end up sick. I just wish i didn’t have everyone asking me if i ran the Portland Marathon this past weekend. I just have to sigh and say – no, not right now.

[takita123]

#1063752

@marciam
First thing, congratulations on BQ! That is an awesome accomplishment. I wish I had stumbled upon your post earlier. I’ve been sleuthing through many many Graves disease posts and people who manages their GD and also "vigorously" exercise are few and far between. I am relatively newbie runner, began running about a year ago, coincidently about the time that my GD symptoms started. I didn’t thought of it much, just maybe stress, lack of sleep, but anyways, didn’t get diagnosed for like 8 months, and when I got the bloodwork, Free T4 was ~5x high normal range, TSH <0.001. "Severe" was the word my doctor used. Fast forward 8 months, I just finished my first 1/2 marathon last weekend, after getting my Graves disease somewhat under control. Before treatment, at one point my heart rate was pretty high, resting ~120bpm, exercise was well over 200bpm (not recommended for anybody). I didn’t have to go on beta-blockers, but my doctor banned me from exercising for a while, because cardiac risk is too high. Boo ” title=”Sad” /> And I sort of did stop. I was so weak anyways, couldn’t walk up any stairs, felt like I am a melted blob. But the methimazole is working well for me, I had bloodwork every 2 weeks while on high dose, and every month or so while on maintenance dose. The general medical literature says methimazole kicks in somewhere btw 2 weeks to a few months. Thyroid hormone have a long half life in your blood, so even if you cut off production at the source (which is what methimazole does), it takes a while for the thyroid hormone in blood to go down.

GD affects many parts of your body. Know that GD not only affects your heart, but can also weakens your intercostal muscles (those you use to breathe), thus making you more short of breath. Being short of breath can be scary. Also have your Vitamin D checked, so you can rule out at least that one reason you are not weakening your bones.

I would highly recommend wearing a heart rate monitor, if you don’t already. Depending on your age, which will reflect what your Max HR should be. Maybe there are light exercises you can do, so you keep your flexibility and strength (ironic but necessary because GD causes muscle weakness), but just be cautious not to increase your HR too much, and blood pressure too high (like AVOID isometric weight lifting). Of course, consult your doctors on this.

So hang in there, take care, and let’s run WITH Graves, instead of running to the grave. Be patient, take it easy for now(seriously, don’t risk it), you will get better soon enough.

[jpheather]

#1063753

Sorry for the late reply, but I just found this treasure trove of information.

I am also a athlete, having been a competitive swimmer for the past 42 years. I did some of my best times in many years this past spring, and was diagnosed with hyperthyroidism in July.

About 6 years ago I was put on hydrochlorothiazide for blood pressure. My potassium dropped but it was several years of complaining of tiredness before I was diagnosed, and my K was at 2.6 at diagnosis. It took several years to recover and lose the 30 lbs I gained. From this we learned my normal K is about 4.1.

Fast forward to hyperthyroidism, both my endo and one of the team physicians for the USA Swimming national team told me that I need to be careful wrt my K, since Hyperthyroidism can cause it to go down. So every time I have labs, K is also measured. It has been low, 3-7 to 3.8, which is a significant drop in an athlete with a normal K=4.1.

I am careful to have K-rich foods (orange juice, dried fruit, potatoes, milk, etc) and I also take supplements. It’s a struggle to keep the K up and I’m concerned about gaining weight again. I don’t know if it’s the low K or what, but the lower my K, the worse my moods.

So you might want to ask your endo to keep an eye on your potassium.

Julie

[marciam]

#1063754

Thanks for the feedback. I don’t think i have had my potassium checked but my Vitamin D was fine. Been on the medicine for about 8 weeks now. My last blood test came back – T4 great, TSH low so the doctor won’t let me back off on the dosage yet. But i’m hopeful that after the next 6 weeks i can start weaning off. Funny, probably because i was in such great shape – i didn’t notice much strength loss – except being extremely thin of course. I just kept pushing through. It is really amazing how your body wants to regulate itself. For you women – i lost my period for 4 months while i was sick (at first i thought i was pregnant!) But after 6 weeks on the medicine it came back! not so sure that’s a great thing – but it shows how your body can come back to normal. I didn’t sign up for Boston – i just can’t know how long it will take to regulate this thing. But i am back to running again – i ran 8 miles last Saturday! Unfortunately i have lost all my speed so it’s like starting all over. I think that weight training is really important too. My big issue is i have to start remembering that i can’t eat like i did when i was sick. I hate to say it – but that was a great side effect of this disease – being able to eat anything you want without gaining any weight! So no races for me right now – but i’m not ruling out one next year – i know there’s another marathon in me!

[Kimberly]

#1063755

Hi marciam – Just a few quick comments…

I would suggest clearing your training regimen with your doctor. The fact that your T4 is looking good is great news…but I figure it’s better to err on the side of caution as we get back into activity.

Keep in mind that TSH can remain suppressed for months (or even years) while our T3 and T4 continue to fall. So if your doctor is going to make dosing decisions based on TSH, definitely keep an eye out for symptoms of hypO, which can include fatigue, joint pain, weight gain, slow pulse, hair/nail changes, intolerance to cold, and constipation. If you notice these symptoms in between appointments, definitely get a new set of labs run and try to get in to the doc before your regularly scheduled appointment.

Finally, when you refer to “weaning off” the meds, for those of us that choose ATDs as our treatment option, this is usually a 12-24 month commitment. Going off the meds to soon will almost always result in a return of our hypER symptoms. The good news, though, is that the maintenance dose is usually significantly lower than the initial dose we started with.

Best of luck!

[runlacie]

#1063756

Congratulations on your BQ! I’m sorry to hear that the Graves’ got in the way of you registering. I’m also a runner and if there’s one thing I’ve learned about Graves’, it’s that it’s a test of patience (and I’m terrible at it). I unknowingly ran my first marathon with Graves’, I thought my heart rate monitor was malfunctioning. Soon after the marathon I was unable to run at all. Not even a block. Found out I had Graves’ and had RAI in July 2009. I walked the whole time I was "hyper" because the Dr. said not to get my HR up too high. Also did a lot of core exercises. I’m not sure if the walking and core work helped me keep some muscle or not, but it kept me from going completely bonkers. Anyways, I was back to running a few months later. I set PR’s this year in distances from 5k to marathon. I just wanted to share this with you because you will get it all back, too. It was tough being a runner and having this because on the outside it looks like nothing is wrong. I kept thinking how it would be a lot easier to have a broken leg or something obvious. I would walk and very nearly find myself in tears as a runner passed me by. But now I am still the same "hyper" crazy productive person that I was before the Graves’. It’s a nuisance, for sure… but in time it will all be okay. Best wishes to you.

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