Graves Disease and exercise.

[Sooze01]

Hello. Please can anyone give me feedback on whether they have managed to build up their fitness post excision? My levels are within range, but that doesn't necessarily mean that I feel well or strong. I have managed a 10 mile jog on varying terrain. I try to run 3 or 4 times a week averaging 6 miles. Sometimes it's almost impossible,other times easy-ish. I would really love to run a marathon for charity,but it seems like an impossible goal at the moment. There is very little info on studies or experiences,so I would really appreciate any relevant help. Thank you in advance.

[ling]

hi there. it took me more than 2 years to get back to being able to do some exercise and only occasionally at that. the reason was because I did not get good medical care and advice under my country's medical system which deems hyperthyroidism as a "non-serious" med condition requiring only medication and blood tests.

in the 2 years when I did not receive good medical advice and guidance, I pretty much continued to live the way I did before the diagnosis. that was a HUGE mistake and misstep as I pretty much went on to wreck my body, heart and eye and as a consequence developed various medical problems which though not as serious as some of cases I have read, were very freaky and frightening as you experience the symptoms.

as people with thyroid conditions know, huge and necessary changes have to be made to lifestyles, diet and stress levels have to be dealt with proactively as these can and usually do trigger a host of unpleasant and even nasty symptoms. if u are lucky its reversible, if not, walah! u've acquired another medical condition to contend with.

as relates to exercise, I was pretty much unable to do any during the time I continued to live as if my body was normal. I didn't have sufficient energy to exercise as well as live my daily routines and work. and eventually, since the body is no longer normal even if the blood tests were screaming I was euthyroid, stress caused my heart to start to give problems. naturally I was even more unable to exercise at this point.

when I eventually figured out the connection to stress and the need for lifestyle and dietary changes, my heart had reached a point where I was experiencing nasty symptoms almost daily and I could not do without the propranolol.

physical activity is now accumulative as in - I need to get requisite rest after the usual daily physical activities or else my heart starts to blurp which will then lead to more serious palpitations and other unpleasant heart symptoms.

right now, I try to stay active to be healthy and try even harder to remember to get sufficient rest, and definitely no regular exercise routine at this stage.

[Sooze01 in reply to ling]

Thank you Ling. I'm sorry you've had such a hard time. It seems that many people have suffered unnecessarily because of lack of informed medical care. No one person seems to have all the same problems, I usually feel worse now 4yrs post excision than I did when I was very overactive. Wishing you all the best.

[ling in reply to Sooze01]

hi Sooze01, you had your thyroid taken out? sorry i missed that yesterday in the rush : (

i am sorry to hear you are not feeling better. yes it does seem different people feel differently after the procedure. and many times on my end, i was herded towards getting an RAI. i was told it would be better for me to be hypo and much more dangerous for me to be hyper. but i always wondered if after the RAI what of energy levels etc, and how i would take care of my elderly mother and myself if, on top of all else, i didn't have energy.

pls check out this website elaine-moore.com/

this wonderful lady had Graves then an RAI - u can read her story on her website - and she's been providing invaluable help to countless others. personally i have learnt much from her posts and the info on the site. if the damn doctors provided half the info she did, many of us would have had to suffer so much less! perhaps u could contact her and see if it helps?

[JanD236]

It’s over 10 years ago since I was ill with Graves but I remember my endo saying to me that it was like my body had run a marathon every day. You need time to fully recover, start gently and maybe question how far you will push yourself.

I always felt that I had Graves as a result of the stress I put my body under by running a marathon. I had felt great during the training, fantastic during a 21 mile race 3 weeks before, ok during the marathon but 2 or 3 weeks later the Graves kicked in.

It took 18 months of treatment and then another year or probably 2 until I felt good to exercise at a reasonable level again. Having said that I’d never run another marathon again....running beyond 18 or so miles really takes it out of your body and I don’t want to be ill again.

My enjoyment of long distance stuff is now satisfied by cycling which just isn’t as hard on the body as the last few miles of a marathon.

My advice would be to listen to your body. On the day that it feels almost impossible, stop! Switch to a walk, maybe even go home and put your feet up. You will get much better but only if you stay within your limits and allow your body to heal.

Good luck!

[Sooze01 in reply to JanD236]

Thank you for your input. Do you suffer from intermittent muscle fatigue too? Have you found that you have been left with residual health issues?

[JanD236 in reply to Sooze01]

I certainly take longer to recover from exercise than my friends seem to but any muscle fatigue is related to the exercise I’ve done. So, for example, my legs are tired today but I did 50 miles on my bike yesterday in the cold so I don’t think that’s unreasonable. I definitely need a couple of days between exercise days. I’ll do a spin class and weights in the gym on Friday and if the weather is ok another 50 miles on my bike Sunday. So thats enough to give me my quality of life!

A couple of years ago I developed pernicious anaemia, another auto immune illness. With careful management of vitamin B12 injections, taking co factors, eating well etc that’s causing me minimal problems.

I’ll probably end up taking thyroxine for an under active thyroid as my TSH has been creeping up and Free T4 falling over the last few years. I recently asked my GP to also test TPO antibodies and these are above range. I’m waiting to see an NHS endo for his opinion on whether I should start thyroxine now.

Health-wise, I’m feeling fine, I’m fitter than most 57 year olds. I do get more tired than some I think but I manage this by doing little or nothing in the evenings, bar maybe 1 night a week, 2 at most. Thank goodness my children have grown up!

My hair is getting thinner all the time but that could be age, menopause, thyroid or B12....take your pick!

So in summary, I have a few health things going on but nothing that prevents me living the life I want to live! Although I have friends my age and older with apparently no health issues if I was a lot younger I might feel hard done by. However, by 57 I only have to look around and see the friends suffering with depression, cancer, who haven’t made it this far etc etc to think I’m not doing too badly, it’s all very do-able.

[Alexkjones]

Hi. I have graves but I'm no runner I'm afraid. What I can say is some days I have more energy than others. It seems to Depend where i am on the tsh scale between 1-2.3. The higher the tsh the harder it will be. What's your tsh level? Alex

[Sooze01 in reply to Alexkjones]

Hi,thanks for replying. My last tsh a month back was 3.82 which for me is high as I'm usually comfortable at around 0.1-0.5. Apparently it can fluctuate quite a bit but my t4 had also shot up to 21.5. My G.P did not seem bothered so I haven't said anything. It is possible that other melds could be responsible for the rise. I would like to get as much info as I can. As I said my first post,this is a little researched aspect of Thyroid issues. Thanks again.

[allyemanny]

Interesting reading this thread. I have just been diagnosed and have already entered a marathon in April. Guess I will see how I am.

[Hidden in reply to allyemanny]

Is that London Marathon - I've got a place for London - hoping I'm going to be OK

[allyemanny in reply to Hidden]

No its Newport - South Wales. Hope we are both ok!

[Caesard]

Hey there,

I'm a 37 yo treated Graves patient (TT) and have to say that I have included sports in my life only after the TT.

It happened about one year after the operation (I was 35) and by that time I was a complete mess, both from a physical and psychological point of view and, while still on T4 only went from couch to a semimarathon in roughly four months.

When started I could only do 3 pushups and 3 minutes jogs, I was significantly overweight and out of shape.

Since that point in time I had good and bad time, crashed on T4 and introduced T3, had other smaller crashes and constantly learned and adapted. But sports has been a part in my life.

I am regularly (though not as much as I would like) train, do boxing, running, sometimes bicycling and walks. It can be done but I have learned a few things:

- overdoing it will tax me; I try not to be greedy for too much in too short time. Patience and reason must prevail

- Step by step worked better for me than "swim or die" though I've tried both

- sometimes I use small dosage increase to compensate for days with much effort; it seems seasonal influence (winter/summer) takes a toe as well on my well being so considering a small adjustment for that too

- recovery is as important as the effort

- correct, balanced food intake is important

- dieting with low caloric can ruin my balance pretty bad

- awareness, being in touch with my body is paramount; so are the blood tests to show/confirm/correlate how I feel to medication.

- the mind and approach to it all - It can tip me over or lift me

For me balancing the above (please consider also implications...) is an art I have not yet mastered but still I'm doing good and I feel confident I would do better.

Best of luck!

[Sooze01 in reply to Caesard]

Thank you for taking the time to reply so comprehensively. It is possible that I'm not in tune with or listening to my body/ mind,the trouble is if I did I may end up not doing much at all. I appreciate people taking time out to reply.

[Caesard in reply to Sooze01]

Don't mention it, I still remember vividly when I was intensly looking for the same rupe of information, in an effort to understand what is possible and what not, risks and chances, Etc...

It's a little contradictory your affirmation that being in sync with your body and mind would keep you from achieving much. I would consider that it would help achieve sustainable gains, provide consistency and why not, allow you to go further. Though yes, it may also mean compromise and frustration.

[Hidden]

Hi. I've got Graves and overactive thyroid which is medicated so not quite the same situation at yours. I had applied for a London Marathon place for next year - which I got. Yikes.

Things I've discovered so far: breathlessness is a real problem (docs insist I'm asthmatic but I disagree), spiking heart rate when exercising disproportionate to the level of exercise I'm doing, fatigue, palpitations.

Thing that have helped so far: found an exercise trainer whose expertise in is rehabilitation, she has helped me shed loads with breathing techniques so that I don't become so breathless than I have a coughing fit, running to Max Heart Rate and walking if I go over the magic number. Not conquered the fatigue yet. Also contemplating using an alternative kind of marathon plan called the 9 mile marathon by Marlies Kort - google it. I've no idea if it will work but think I might give it a try and I had already adopted a HR way of running with fat burning rather than run-like-crazy carb burning (see philmaffetone.com) if any of this makes sense. Palpitations - docs won't put me on beta blockers which I agree with and usually happens when I've over extended myself.

I'm not convinced there is loads of info out there either. Hope you find some help or create your own path.

[Crazy_CatLady in reply to Hidden]

Hi, a few months since your post, but I was wondering if you’d tried the 9 mile marathon plan. I’m hypothyroid, and have run a few marathons previously. I ran my last one a year ago and found training really difficult. I’ve seen this plan advertised and am on the brink of purchasing. 9 mile max long runs sounds too good to be true, but would be fantastic if it works!

[Hidden in reply to Crazy_CatLady]

Hi. I didn't follow it as I couldn't get my time within the pace parameters. I would be able to now. So my training is following a more traditional plan. There have been a couple of times when I think my thyroid issues are causing more fatigue than just marathon training fatigue. I'm slower but then I've not run a marathon before. Will be doing 18 miles this w/e. Given different circumstances, I would try the 9 mile marathon. Let me know what you decide

[C_S-]

I get SO cross when I read all the comments below and talk to fellow sufferers. I have been fighting with the medical profession over this for some 30 years. And all of you below are SO right. Once again I am going to show this to my "professional" ....

[Fruitandnutcase]

I’m in remission from Graves‘ disease - I was diagnosed in 2012. I spent almost exactly a year on block and replace.

Before I was diagnosed I felt very ill, I had no energy, I used to do a lot of long distance walking but ended up that I could barely walk at all. I also did Pilates and went to my local gym twice a week.

I was determined that Graves wasn’t going to destroy everything that I enjoyed in my life and with the help of my Pilates teacher who is also a qualified physiotherapist and the staff at my gym I managed to keep going throughout my treatment.

It took about two years before I had the urge (and the energy!) to go on a long distance walk but I can do it now. I’d say my muscles are definitely weaker and take longer to recover than they were / did pre-Graves but I’m 69 now so I’m a few years older which could be part of the reason. I’ve also lost the breathlessness that I had when I was at my worst.

I’d say that there is no point pushing your body if it isn’t ready to do what you have in mind for it. It might work in the short term but I doubt if it will do you any good in the long run.

Saying that, there’s nothing like having a goal to aim for - it’s just knowing when enough is enough and stopping.

[AloeAli]

I remember Dr. P. telling me many years ago when I had bought a Lifestrider running machine, (in situ and all ready to go!), that I shouldn't be going too mad as I'd be flogging my thyroid and it would make me feel worse and not do me any good. I had always wondered why everyone else felt so terrific after exercise and I always felt terrible. Forgot that advice at the beginning of this year and joined a Zumba class, (having built up slowly with an over 50's gentle one for about 5 months!), then wondered why I felt so rubbish - always happens after aerobic or other strenuous exercise. I've since seen advice on line that Tai Chi, stretch yoga, (not where it puts pressure on joints), gentle swimming or ordinary walking is much better for Hypothyroid sufferers. As far as controlling weight is concerned it's 80% what we eat and drink anyway, exercise is only 20% of the equation - personally killing myself on a treadmill 3- 5 times a week, or any type of dancercise session has never helped me.

[Caesard in reply to AloeAli]

I will object somewhat...sports like running long distances is about more than controlling weight.

I'm thinking general well-being, balance, discipline and endurance - translated into sane, strong mind and character.

[AloeAli in reply to Caesard]

Of course Caesard - I was simply saying that my specialist told me not to flog my thyroid which can happen with endurance exercise, and as struggling with weight is something most people with Hypothyroidism battle with, they naturally try and help their situation by doing some, particularly cardio exercise. If weight is not an issue and the exercise is purely for the other reasons you mention, the effect on the thyroid is still the same if it's a stress on the body, as opposed to being a relaxed style like Tai Chi.

thyroidtreatmentforwomen.co...

[Caesard in reply to AloeAli]

Understood, thanks.

I can also confirm that overdoing it can be negative, even on HRT after TT.

Also, rarely for the like of us the weight is not a problem