Suspected Grave's disease and gentle exercise - Thyroid UK

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Suspected Grave's disease and gentle exercise

MiniMum97 profile image
19 Replies

Consultant said no exercise - but I only thought to ask him this when in the waiting room, and didn't clarify what this meant. I am on beta-blockers only that are generally manage the symptoms but am feeling a bit jittery today. Wanted to go for a gentle swim - if I don't exercise at all, my muscles get very tight and sore, and my circulation sluggish. Have read on internet though that even this may be a bad idea. Does anyone know?

Thank you

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MiniMum97 profile image
MiniMum97
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19 Replies
greygoose profile image
greygoose

Pity you didn't have time to ask him why no exercise. We normally tell hypos to restrict their exercise to gentle walking or swimming, but that's because they don't have enough T3 to support anything more exerting. But, if you are hyper, you must have plenty of T3, so I can't imagine why you shouldn't go for a gentle swim. I'm probably missing something, here. :(

MiniMum97 profile image
MiniMum97 in reply to greygoose

I think it's because exercise can stimulate the thyroid and you can produce more T4 and T3 - exercise will also use some up, and in hypo you can't replace it, but presumably any stimulation of the thyroid is not good if hyper - perhaps you produce more than you use? There are lots of reports online of people doing a gym session and feeling terrible after it with lots of hyper symptoms. It's also because of the increased heart rate - you may be further increasing your heart rate when it's already working really hard and potentially causing damage. There's also a (singular!) case reported of a condition where a man peed out his muscle fibres from gentle exercise with untreated hyperthyroidism, which sounds lovely, but unlikely I think.

I think I'm going to give it a go. My levels weren't too high when last tested and I wear an apple watch so can keep an eye on my heart rate. Obviously aerobic exercise is not a good idea, but a gentle swim isn't much different to just moving around, and he didn't say that I had to use a wheelchair or stay in bed! I tried to do a gentle gym session (walk, gentle bike and short row) and short swim just before I saw the endo and that didn't make me feel too well - I felt weak, shaky and exhausted afterwards. That was obviously too much, but I think a short bit of breast stroke is probably ok. I think I am going to go for it.

greygoose profile image
greygoose in reply to MiniMum97

Yes, I think it's probably more to do with the heart rate than anything else. If exercise made you produce more thyroid hormone, hypos would be exercising like mad!

I can't imagine how that man got muscle fibres in his bladder - unless it was the bladder itself he was peeing out! lol But, what do I know!

MiniMum97 profile image
MiniMum97 in reply to greygoose

I know! It was his thigh muscles, god knows how it gets to the bladder! Presumably it gets into the blood stream and is excreted like a toxin? It sound grim. It's called Rhabdomyolysis. LInk to article below:

ncbi.nlm.nih.gov/pmc/articl...

greygoose profile image
greygoose in reply to MiniMum97

Horrible!

Fruitandnutcase profile image
Fruitandnutcase in reply to MiniMum97

Yee goodness, that’s grim! Thank goodness I didn’t find out about that when my thighs were a problem and my Graves was in full swing!

bantam12 profile image
bantam12

Is your heart rate high ? If so that's probably the reason to not exercise.

MiniMum97 profile image
MiniMum97 in reply to bantam12

It's OK now I am on beta blockers - it fluctuates from 60s to 80s - whereas before it was more like 80s to over 100 - highest was 158 resting. Still getting odd palpitation and heart can still feel as if it's pounding as times even though it's much more slowly than before, if that makes sense ie obvious and noticeable heart beat but not racing. I only notice it like this at night.

Fruitandnutcase profile image
Fruitandnutcase

I’m in remission from Graves. I used to be a great long distance walker but just couldn’t do it back when I was being treated with block and replace. I have asthma so I wasn’t given beta blockers. I was utterly exhausted all the time before I was treated and pretty tired a lot of the time I was. Back at the start I slept most of the day, did nothing around the house I was so tired and ill

I kept going to my Pilates class and my twice weekly gym sessions though because it was something good I always enjoyed and it was something that made me feel human.

I did massively reduce the amount of effort I put in at the gym though and my Pilates teacher is a physiotherapist so that was carefully monitored.

It took me a long time to get back to the long distance walking though. I did short walks for a while then one day I just had the urge to go further and I felt ok.

I was never told not to exercise but I’d say just take it very easy and don’t do anything where you burn yourself out. It’s not going to do you any good at all to overdo things.

Thighs - my thighs were so weak I couldn’t get up off the ground if I got down low - I just thought I had too much junk in my back pack. How wrong I was.

MiniMum97 profile image
MiniMum97 in reply to Fruitandnutcase

Thanks that’s really helpful. I used to do a lot of long distance walking too, and I used to run plus regular yoga but haven’t been able to do much at all since becoming hypothyroid. It’s very frustrating. My thyroid hormones have now gone the other way and this may explain why, despite my efforts I have been unable to get my fitness back.

You must have felt awful without beta blockers. They have really helped and I know quite quickly when they are wearing off. It’s good to hear you were able to do some gentle exercise all the way through the process and this had no negative effects. Unfortunately I was unable to swim today as it was closed when I got there as they shut the pool early as it was Good Friday. I’ll try again tomorrow I think.

It’s interested how being hyper or hypo makes you tired. It’s a different kind of tiredness but I feel shattered all the same. It’s really good to hear that you’ve come out the other side and there is some hope. I have felt ill for so long, its easy to lose hope that you will ever feel well again.

Thank so much for your post.

Fruitandnutcase profile image
Fruitandnutcase in reply to MiniMum97

I’d probably just go lie in the pool and float and meditate and maybe do the odd length or so. Definitely don’t expect to do anything strenuous. I think when you are hyper you need an awful lot of rest and sleep to recover. I found I got really selfish and only did what I wanted to do - not what I felt I should be doing. Poor old husband did the shopping, cooking and washing up etc.

A neighbour used to roll her eyes that I couldn’t do some things yet I did my Pilates and gym - to be honest my jaw got more exercise at the gym than my body but there was a nice atmosphere there and I liked being with my gym friends even if I was pretty weak and useless. I felt by keeping doing that I was saying ‘stuff you’ to my Graves.

Just don’t go mad whatever you decide to do. You’ll get back to what you used to do without killing yourself in the process. 😉

twinkleyt profile image
twinkleyt

I was Hyper in 1970 and diagnosed very late. My pulse was 160 when I took it myself sitting still and feeling my heart rate racing but in those days no beta blockers were given only the Carbimazole. I was training as a ballet teacher and became so weak it took me 20 seconds to climb each step on the stairs and so breathless. All this and other things are typical Hyper symptoms.

48 years later and post sub-total Thyroidectomy I have an aortic valve regurgitation and was recently put on beta blockers but for me they caused a Zombie effect and I couldn't function at all so stopped them.

After the op, I retrained as an educational dance teacher and my fitness and agility improved greatly. Like all illnesses people react differently, but with Hyper the main risk is damaging the heart due to the high pulse rate so exercise must be light - Pilates would be fine for you but swimming is hard cardio work and also running, jumping, weight lifting etc.

So take it easy and look after yourself.

twinkleyt profile image
twinkleyt

Oh, yes, and Yoga too if you enjoy that.

CSK1 profile image
CSK1

I posted for the first time this week and subsequently am weaning myself of propranolol. My last proper walk before diagnosis was the ‘Coffin Route’ in the Lake District, the next day driving back to London was the worst experience of my life as I had anxiety, panic attacks and my heart never went below 108; I was misdiagnosed in October last year as having stress and anxiety and given a self referral website for counselling, I decided to quit a stressful job and give myself positive goals including signing up to walking the moon walk, I looked at my life and thought I had nothing to be depressed about and discovered my blood sugar was 3 so adopted some healthier eating habits and began pushing the miles, it was gruelling, in fact the worse my physical symptoms got the harder I pushed myself; after the disastrous drive my youngest daughter made a Drs appointment for me with a different Dr and following blood test I was diagnosed with hyperthyroidism and prescribed carbimazole and propranolol, the beta blockers stopped me doing anything and my asthma brought me to this website; I plan to start walking again this week but, will listen to my body, I’m not an expert but in hindsight if I had listened to my body sooner I would have got that second opinion sooner. My endocrinologist did not say anything about exercise, I will discuss this with my dr when I see her to translate my test results.. I will let you know what she says.

MiniMum97 profile image
MiniMum97 in reply to CSK1

That is an absolutely horrifying story. That first doctors incompetence and assumptions have led you to make life choices that I am sure have had a financial impact and excercise choices that may have damaged your heart and muscles (I hope this is not the case). I then another doctor put an asmatic on propranolol. The incompetence of the medical profession never ceases to amaze me!

I was diagnosed with hypothyroidism in May last year and then in Dec started getting severe palpitations and was in A&E on NYE. They did various blood tests and I obviously told them I was hypo so assumed they tested my thyroid. I then went to see a GP a couple of months later who looked at these results online and told me it was stress and I needed to go home and stop worrying about it. I nearly believed him but then had a look at the test results online. And I was shocked to see that no thyroid tests had been done.

I therefore decided to test myself and it showed that my T4 and T3 were very high. I was really angry and am still thinking of making a complaint both about the hospital and the GP who just assumed I was stressed. I am not sure how feedback could be given to those doctors any other way so that this is less likely to happen to someone else.

SilverAvocado profile image
SilverAvocado

I can't remember where I read this, but both hypo and hyper people have the problem that muscle tissue is not properly supplied with hotmone. And that the muscles aren't able to work properly in either case.

I read that it is dangerous to exert muscle tissue when it is in either of those states (too much or too little hotmone). I got the impression that with hyper the danger is much more ripping and tearing of tissue. But overall these are complex tissues, and a lot of processes are going on to cope with and benefit from exercise.

For hypo, I got the impression that new muscle can't be built, but I wasn't paying as much attention to hyper. Overall I'd assume the same is true - most of the benefits of exercise, growing muscle, increasing heart and lung stamina, etc, can't happen.

I have managed to get stronger at some exercises while I've been very hypo, so it can't be completely true that muscles can't strengthen. But in fact I've got a much larger improvement in muscle strength by getting closer to my ideal dose then by repeated exercise - when at my most hypo I repeated 2 physio exercises every day for a year or more, and barely increased what I could do :p

My largely uninformed advice would be that as long as it's for stretching and relaxing muscles, and not about strengthening, stamina, increasing capacity of heart or lungs then you should be fine!

You may be able to design a routine that cuts down considerably on what you did before you were ill, but maintains the positive benefits you are looking for. I think often doing the same movements, but cutting down on speed, weights and repetitions works well. So maybe swim as slow as you can comfortably do, and as soon as you get comfortable in the water and into your stride, what you used to consider the start of the workout, time to get out! Then go home and pay attention to how you feel. If you get small bad effects, do even less next time (maybe just walk a couple of laps, or mess about in the shallow end and do some stretches?)., if you feel completely fine after a few days, you can add a tiny bit more if you want (or keep it low for a few weeks, then add 10% or 20% of activity).

MiniMum97 profile image
MiniMum97 in reply to SilverAvocado

Yes I completely agree. Thank you for your post.

CSK1 profile image
CSK1

Hello again, visited GP this week and asked her about exercise, she advised gentle exercise ie walking, not cardio, she emphasised ‘gentle’ and don’t overdo it.

MiniMum97 profile image
MiniMum97 in reply to CSK1

Thank you! That’s what I’ve been doing and going ok. V gentle swimming. Stopping as soon as I feel tired or any discomfort at all. Thanks for taking the time to post. Very helpful.

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