Thyroid glands and cycling… the joys of it all

In September 2009 I was diagnosed with Graves Disease. Sounds worse than it is. It seems my fantastic immune system that I have been so pleased with is biting back. I cannot remember the last time I have had a cold or a sore throat even, and apart from child birth I have never had a day off sick from work. Maybe thats the problem....

Anyway, in September last year I had a very strange thing happen after I finished the Audax ride – the Northern Dales Populaire from Arnside. I was staying at my brothers cottage while he was away, so I was alone. Four hours after this ride, my heart rate was still going hard like. It was doing 110 beats per minute and pounding hard with moments of fluctuation. It was a rather scary occasion I can tell you. So much so, I took myself off to Lancaster General who checked me over for heart problems. They found nothing wrong, and didnt think 110 bpm particularly high enough to be a concern, so I felt a bit of a fraud, but on your own alone in a village where you know no one, it was a very uncomfortable evening and night. I didn't get back to my brothers house until 5am. Having been told to contact my own GP should things not improve. Heart rate much better by then, having settled down at 90 beats per minute, and the powerful hard thumps against my chest wall had gone at least. No pain or discomfort, but a very worrisom day all the same.

It was as I was cycling back to the boat home the next morning when I started to wonder about an over active thyroid gland. There I was, cycling back to the boat, having cycled 70 miles the day before, and only having had 3 hours sleep, but I wasn't tired or drained or anything as I felt I should have been. Heart rate was high at 80 bpm at rest, but a lot better than the day before. (my normal heart rate is between 55-65 bpm)

I did what most of you blokes would of done when i got home. I ignored it. I was far too busy to get it sorted, especially as I sort of knew what it was, and I had a bike race to get to first.

The following week, I attempted the Isle of Man End to End Challenge. Well, that was a waste of time, I knew at the start I wasn't going to manage this ride. The End to End Challenge is a tough 43 mile mountain bike ride off road of course up some nasty hills in fact when you ride this, you are lead to believe the island only goes upwards and that rocks breed beneath your wheels as you power along.... The weather has hot and with a tailwind. By St Johns the half way mark, I had to bale out with total exhaustion. All my shredded wheat completely used up.

Graves Disease

Blood test at the doctors over the following days, indicated Graves Disease. This is an illness, I shall carry for the rest of my life, there is no cure other than to destroy your thyroid totally something I might end up doing at some point. It seems my own immune system is damaging part of my thyroid gland. The piturity gland sends signals to the thyroid to produce tri-idio-thyronine which controls your metabolic rate, when enough is produced, thyroxine levels in the blood tell the piturity gland, to reduce its feedback hormone telling the thyroid to then produce less tri-idio-thyronine. It seems my thyroid gland only gets part of the message, ie, it gets told to produce, but it is not told to reduce, so more and more hormone is produced which ends up with the heart over working, the muscles over working (tremors are a symptom), and to use up energy stores in your muscles much more quickly. Weight loss being another symptom. The brain of course, over works as well ( it gets difficult to prioritise things, and easy to become irritated by small daily life factors, plus brain fog and basic cognitive confusion is common), the bones suffer long term, as osteoporosis is a given with Grave's disease.

It is controlled at the moment with a drug called Carbimozole. I hate taking it. You have to take this drug until you go under active, at which point you find your self falling sleep over your computer at work, and almost unable to function at all. In early December my resting heart rate dropped to under 47 bpm. It was exhausting, feeling tired all the time, going to bed at 7pm to get awoken at 7.30am the following day feeling tired and run down. Under-active is just as horrible as over active, in fact I think it is worse as you do feel really rubbish as depression kicks in to becomes a factor here as well... (joy....)

At this point, another blood test tells you to drop off some of your medication, and so you then swing back the other way. At Christmas I had been able to drop from 45mg of Carbimozole down to 20, and then 15mg. I cycled my Christmas Audax on Boxing day and felt, I could do it twice more. Full of energy and spirit, back to feeling like I used to do.

Its now taking me the other way and is swinging away from normal to back up high again.

Yesterday I had initially at least, a fabulous ride during my Feb Audax run. I had taken the day off work, the sun was out Mr Wind was somewhere else and the roads were super quiet as everyone was at work except myself... This ride covers the Northern Plain of the island, and for 15 miles on rural roads, I did not meet one single car, just a couple of tractors. Even dog walkers were busy elsewhere. It was just me, the sunshine and my whirring wheels – perfect. I wanted to blog about that, not about this.

I had had an odd feeling in my chest that things were not going too well, a familiar thump in the heart department a day or so before yesterday, so I packed 2 chocolate bars, 2 large ham salad baps, a whole flask of hot chocolate and a litre of water to take with me – to avoid the 'bonk'. I normally only have a single ham bap or a single chocolate bar and just water. But, on this Audax ride, I ensured I had regular stops with something to eat. But by the time I had got to the top of the Sloc – the highest part of the ride at 330m, with just 25 miles left to go, I was starting to seriously flag. By the time I reached Castletown, I was literally counting the miles home.

I got back to Douglas in good time, having completed the ride in about 7 hours, which is my usual time, so I was pleased with that, as I had made good time doing the Northern Plain, where the route is much flatter, but the last 6 miles after my final cash receipt at the Sea Terminal for John Ward, was a killer. I was so tired I had to take regular stops it got to every few meters, I had to get off the bike and sit on the pavement. Chas passed me a mile from home and he did not recognise me, I was going so slowly. I had never ever been so pleased to find my turn off homewards, the last bit is up hill (isn't it always).

I almost collapsed totally, Chas had to put my bike away, I just crawled upstairs to the bath, soaked in it for a while, but was scared of falling asleep. I went immediately to bed, and slept soundly from 5.30pm until 8am the following day. Didn't have the energy to eat.

This is the bad bit about Graves Disease, you tend to live on a kind of roller coaster, for weeks it goes well, and I think – 'It's going, its gone, then suddenly, it creeps up on you when you least expect it to. It comes suddenly like someone catching the back of your knees with a stick. It makes planning anything quite difficult. I wanted to cycle Lands End to John O Groats this summer with the CTC, but have had to put that on hold until this is more balanced. I would hate it to interfere with that. I can go for 6 weeks or longer with not a problem, then BANG, it can hit me like it did yesterday. I have not cycled today, my blood pressure is still low, and I feel faint on standing for any length of time, so spent the wonderful weather of today 'resting' and eating and feeling disappointed not being out there on my wheels.

Tomorrow I am supposed to go on my mtb with the girls, but will take a look on how I feel tomorrow morning. Next week I am off work, for half term where I had plans for sorting out another Manx Audax ride – I already have the route done, just gotta sort out the route sheet and all those junctions and turnings, which does take time to do properly. And you need your brain to work well too.

According to the endocrinologist, I must not let this disease rule my life, and frankly I do try not to let it do so. But, sometimes it dunn half get in the way! Thankfully, one of the best exercise programmes for Grave's happens to be cycling. πŸ™‚ πŸ™‚ Its good for the heart and muscles and gently exercises bones with low wear and tear on bodily tissues. I am also very lucky that my endocrinologist has both his feet on the ground, πŸ™‚ as some believe that no exercise is best until you are 100% balanced – which can take longer than 2 years to achieve! I keep telling myself how lucky I am, I have an auto-immune disease, but its not diabetes or lupus. Nor do I have heart disease which requires surgery or such like. But, I shall say this, you must never take life for granted. Get out there on ya bike and live it to the full. Achieve what you want to achieve and do it while and when ya can.

11 March 2010
Things have been up and down this week, not sure if its my medication or just the weather, but feeling strange. The thumping heart rate is back again, but only at night. This is coupled with more weight loss. I am now 9 stones 10 pounds, having lost over 4 stones (2 of which via Graves disease). Feeling rather skeletal these days, and I am a size 10 (down from a size 20) – never in my life have I been a size 10! Concerns now about fatigue. Feeling very run down indeed this week. Although I am still managing to cycle to work ok. In fact I cycled this week off road to work which was great fun. But I fell asleep over my computer, and last night I fell asleep on the sofa, which is something I never do. Not sure again if its meds or not. My blood pressure has gone down a fair bit which is good news though.

I have been a bit worried about the amount of work I push my self to do regarding exercise. I have another slight problem although its not a major one by any means, but I am very obsessive about some things and exercise has become of of those things I have to do. (This is just part of me and who I am, and nothing to do with Graves). Even one day off my bicycle turns me into some 'fidgetity' mad thing. But at night, when my heart bangs on and on, I do wonder if i am causing it to over work. It feels likes its angry or such like. WHen it does this, I also feel like I have surges of adrenalin which do make you feel strange. Rather like you are at a start of a race, but never get going with it....

Will wait another week for this to settle down. I took myself off to the hospital in my lunch break for a blood test as this has been going on for about 10 days. Maybe I need to take more medication again? Phone the endocrinologist on Monday. Poor bloke must find me a real irritation, as I keep having to go back to see him. But even hubby is noticing how old I am beginning to look. 'Dead on a stick' is how he described me today – nice eh, but I do feel so tired.

23 March 2010
Been feeling very unusual. Saw my Gp as I had my recent blood test at the clinic 2 weeks ago, phoned into clinic 3 days later to be told my receptionist that as she wasn't medically trained, that she was not qualified to give me my results, and 2 weeks later, I am still waiting for them. Now on 10mg per day of Cambimozole.

My odd feeling is this. I feel full of adrenaline. This is usual when my thyroid is over active, so I am assuming it is. Just like everyone else, I have certain deadlines to meet at work. But currently any deadline causes me to become over excited. It is showing up as a feeling.... Its the same feeling one gets at the start of race or such like. When I ride my Audax rides, I get excited at the start, and the feelings in my belly are exactly the same. The other odd ness feeling, is that I get totally wiped out, particularly after eating. Last night was a classic example of this. Having done my day at work, I went to the supermarket after tea, as is the norm on a Tuesday evening. I became wiped out, doing this, and had to go to bed as soon as I got home, so just went straight to bed at 8pm, where I slept soundly until the alarm at 6.15am.

Today, very tired until about 11am, eyes very drawn and baggy. The adrenaline feeling started all over again by 11am, and I was on a 'high' for the rest of the day. According to my GP, these feelings are caused by my body becoming accustomed to my over active thyroid gland becoming less active. My bloods according to my GP are sort of 'normal' T3 and T4 are normal, but TSH is still low. He was surprised at this finding, but says in a months time we will re-test and to stay on 10 mg of Carbimozole for now if I can.

Frankly, this thyroid thingy is a right pain in the bum, and is making planning cycling trips very difficult as I do not know how each day will pan out. GP has told me not to over do things, as I can strain my heart. Now what ever does he mean by that? Is an 80 mile ride over doing it? I know for certain, that my bodies recovery after a long day's cycle ride is taking ages. I did an Audax ride on Saturday, followed by 25 miles off road on Sunday, and I was kept awake on both nights with very powerful heart beats. They were not over fast, but were disturbing in my sleep, as it feels like my neck is one big heart beat.

I have had all sorts of plans for this summer, and most of them, I am going to have to cancel or reduce. I have been told to expect a year of this irritation. At least, it isn't a dangerous or serious disease, its just a pest. Sadly, I am not much good at being poorly, and just don't want to feel this way anymore as its getting in the way of my cycling.

I am collecting my new road bike in just 2 weeks time. I was supposed to cycle it back to home, but have bailed out, and accepted a lift instead from my brother.

11 comments on “Thyroid glands and cycling… the joys of it all”

  1. Patrick wrote:

    Mary, that's a great Post. Will you eventually achieve 100% balance, and then be fine? I hope so. I wonder why these things don't show themselves when you're young. My sister has Celiac Disease and she discovered this only in her thirties. In her case, cycling (or extra exercise) is apparently not a good thing.

    Does Graves Disease make you more resistant to other illnesses?

  2. Mary wrote:

    As I have an over active immune system, I tend not to catch viruses etc, but I understand I am at risk of ending up with more auto immune illness, so I need to keep an eye on my general health watching out for diabetes, arthritis etc. Funnily enough, these auto immune illness effect more women than they do men. My eldest has irritable bowel, and I do hope it does not progress to Celiac disease – exercise can be a trigger for Beth's tummy to act up. There is supposed to be a inherited link, but this is not so in my case. No family members with auto immune ill health.

    If the doc cannot get it balanced, they end up destroying it with heavy iodine, then I shall have to take thyroxine for the rest of my life. Frankly it does seem the easier option with no messing about, as the swings and roundabouts are not much fun. But I have to wait a year on carbimozole first, which is why i cancelled my UK end to end this summer, it had been my original plan to do that this year. Hope you don't mind the post, there is very little on the general web regarding Graves and its effect on exercise, by blogging this, I am hoping to keep my own personal history of the illness as it progresses, and it will be of interest to others with any luck.

    According to Mr Endocrinologist, it is not supposed to effect my exercising, but I find it does if it swings high or low as it has a direct effect on metabolism and energy levels. Hitting the wall, is what I think happened on Friday, and I have not had that before while cycling my Audax's ever, as I am so careful regarding hydration and food.

    My specialist says its a common illness that effects athletes! If only he saw my 'before' picture when I weighed in at over 14 stone and was a size 20, that was just 2.5 years ago.... But nice to be thought of as an athletic person now. πŸ™‚ I am currently 9 stones 12 pounds, he only sees the 'now' me, and not the me before I started cycling.

  3. Chris wrote:

    Hi, Mary. I had never heard of Graves' disease before. I suspect you have spent quite some time looking for more information on this condition on the Internet. According to Wikipedia, one fellow sufferer is Gail Devers, until fairly recently a formidable flat sprinter and hurdler whose photograph is hung on a wall in my school – a specialist sports college.

    Her picture is there with a message about coping with life's hurdles – at first sight I noticed it mainly because the poster is incorrectly punctuated (sorry – occupational hazard!) – but her image is a striking one, as is her life story. The image is there to give inspiration to others, in particular fellow athletes. Keep on cycling, Mary. Best wishes.

  4. Garry wrote:

    Mary, sorry to hear about this nuisance. I'm a retired doctor and in my time when young (I became a histopathologist) saw a lot of it. Graves was one of three famous Dublin physicians a long time ago. The others were Corrigan and Stokes. It's a nuisance of a condition of course. Another possibility down the line is a total thyroidectomy with replacement thyroxin.
    If your thyroxin is fluctuating there is no way that you could not be affected by it, in my opinion.
    I don't think there's a link between coeliac disease and irritable bowel, or if there is, it's tenuous. Irritable bowel is the commonest human condition and if she's getting it from exercise it's that the exercise is a bit hard or excessive for her for her level of fitness. I've had it from excessive exercise myself and have had it before exams, from the stress of work , etc.
    It's what's known as a psychosomatic condition, i.e., a condition caused by interaction of the brain with the non-brain, and as such is not really a disease, but rather a manifestation of stress. De-stressing is part of the treatment. Coeliac disease OTOH is due to an intolerance to gluten, which is the substance which makes dough sticky in bread-making. The Irish have the highest incidence of it in the world, 2.5% of the population having it on routine biopsies. It's probable that it's highest here as Ireland being at the periphery of Europe was the last place in Europe that farming reached, so was last introduced to wheat. In other places the coeliacs probably died out.
    Anyway, hold tough.
    DΓ‘ fhaid an oΓ­che, tagann an lΓ‘.
    Irish saying, which I love.
    No matter how long the night, the day comes.

  5. Mary wrote:

    Most of the time, I am not bothered by it one jot. Most of the time, I live a very full cycling life.

    Cept, its that bit of time when, as Garry says it becomes a nuisance – that is the best description of it to be honest. 90% of my days are perfect living with it.

    Friday was one of those 10% days, and it hit me like a jolt of lightning. Yesterday (the Tuesday after this episode, I cycled 50 miles over 1,000m of height higher, very little food and had a fabulous day out... With Grave's, so long as the low's only hit at home you are fine. But, its a right begger of a totally pesky thing, when it hits you alone in the UK on a very long ride such as an Audax or a long tour. Popping a pill doesn't sort it out for nearly a week, as it seems to be in lag time.

    I hope you don't mind me blogging it from time to time, historically it will be of use to me, and hopefully to other sufferer's particularly those who are told not to exercise at all, as a lot of folk are given this piece of advice to follow. Possibly because it's easier for the consultant to give? I have told him of my cycling obsession, and he is thankfully fine with this.

  6. Matt from California wrote:

    I know this is a dated entry, but I hope you are well. I am a bike commuter in Los Angeles and I've had GD for a few years. My doctor wants to give me the radioactive iodine coctail, but I don't want that so I am seeing a holistic doctor in a few days. He said I have toxicity and unless I rid the toxicity, I will continue to have problems. But biking is tough- my legs have no power and I can't breath on even the flats.

    I hope you are well....

  7. Mary wrote:

    Hi Matt, I hope you manage to get your GD sorted.

    I have now been taken off all medication, as the Carbimozole has swung my thyroid underactive. I have been off medication since September 2010. So far, all is well. I do from time to time have heart palpitations and a rise in heart rate, but my consultant wants me to continue for the time being and see if the T3 levels rise up high again. So far they edge a bit above normal, but not enough to require control.

    Do let me know how your holistic doc works out. Like yourself, I want to avoid the heavy iodine treatment.

    Keep well, and I hope your cycling legs return soon.

    Mary

  8. Patrick wrote:

    Mary wrote: I have been off medication since September 2010. So far, all is well.

    Good news Mary πŸ˜€ .

  9. James wrote:

    Hi,

    I really enjoyed reading your blog, especially from a fellow cyclist. I have been diagnosed with GD since 2009 and its been a roller coaster every since. I had the carbimazol tabs for 18 months, went into remission and now its same back with a vengeance.

    I have been off the bike for 1 month now, resting heart rate of over 100 BPM and can't catch my breath at the moment either. Thankfully now starting to come down now that I am on the carbimazole again and get back on the bike soon!

    You have done incredibly well, its tough going when your up and down with your metabolic rate. Keep the good attitude as its inspirational. Its been a while since your last post and I would be interested to see how you and your biking are getting along.

    Looks like the radioactive iodine for me, as its becoming more difficult to stabilise.

    The very best of luck.

    Happy trails.

  10. Matt from Cali wrote:

    Hey James,
    I forgot about this website and didn't realize Mary responded to my post. So thanks James for posting! I saw it in my email and remember my post, too. I have been dealing with GD for about 5 years now. My doc wants to take me of methimozole, and I keep having to point out this will be my 4th attempt at trying to go off it in hopes of remission, and he just sighs and says no, I guess it'll just put you over the top again. But he agreed not to mention RAI to me because I won't do it (and with the methimozole keeping me in a good place, why?). James- just consider carefully the RAI carefully. I won't say to do it or not- that's for you and your doctor.

    I am just starting to train for a century ride in May. Can't wait. I still get breathless easily (no idea what my heart rate is). But I ride 6 miles a day commuting to work and I hope to get to 170 miles a week to prepare for the century ride in Long Beach. There's a great website for all things bicycle- bikeforums.net- I am going to post there about GD and training. Check it out!

    Mary- you asked about the holistic and I'll be honest- the guy I was seeing was a charlatan. He was basically telling me not to take the methemozole, saying it was unnecessary. He was giving me some stuff I think called thyrodex. My endo doc couldn't find anything in English that described what it was, but he was able to figure out it was macerated or dried and powdered thyroids... so basically I was consuming the very hormones I was supposed to avoid! GGGGRRRRR and he was expensive- like $500 a month in visits and meds (insurance wouldn't touch it). I should have sued him for malpractice.

    I hope everyone is well.
    -Matt

  11. James wrote:

    Hey matt,

    Thanks for posting. Well after some consideration I have decided not to go with RAI after researching further. I am however looking to possibly go for surgery. I know this is a big step but I am really looking for a definitive treatment. Some people seem to have really benefited from surgery while others not so much.

    That's really cool your entering an event. I feel it is very important not to become the disease or let it control you. I am entering some races this year As well. It gives you an objective, drive and distraction. Unfortunately I don't live in as nice a climate as you, I'm in scotland but still great fun.

    Some people are the lowest scum praying on people with diseases desperate for cures For financial gain. Hopefully you won't come across anymore charlatans! The best thing I give in advise is to stay as stress free as possible, keep exercising and get educated about your disease.

    All the best in your century ride matt. Let me know if you have any epiphany moments in treatment. Keep strong live long.

    James.

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