These are the numbers, amongst others, I will bring you each update. Right now most of them are not the numbers I am looking for. Not even close.
91 kilos. I recall a time when I was 79. For a day, or maybe it was only a morning. But that was my official weight – less than 80 kg. 82 is sustainable - if I can get there again. Right now I’d settle for 84.
267 watts. According to the power test I’ve just done, that’s my FTP. Functional Threshold Power, or, if you prefer, the constant power level I ‘should’ be able to maintain for one hour. Two years ago that was more like 285W, and climbing steadily. Fuck.
194 beats per minute. That’s as high as my heart rate will go just now. I’m missing a full ten beats from 204 - my old max. My body just doesn’t seem to want me to go there any more, no matter how hard I try.
62 beats per minute. That was my resting heart rate the other morning. When I’m fit it’s usually in the high forties.
89 is my Serum Ferritin value. It was 675 in April 2015. Target is 50, but anything less than 100 is good enough.
40% is my Transferrin Saturation. It was 98% in April 2015. Target is 50% or below. Yay.
I stand motionless under the shower, forehead pressed against the ceramic tiles in the corner. Water teams down from the shower head, as hot as I can bear, and pounds the back of my neck. The heat and steam offer some kind of relief from the exertion that I’ve just inflicted upon myself. I wonder momentarily if perhaps this is what it feels like to occupy the infamous showers of the old Roubaix velodrome having completed the Hell of the North.
Okay. Reality check, maybe I’m being a bit melodramatic. (Moi?). Conducting a twenty-minute power test on the turbo trainer in my garage is not entirely comparable to completing the Queen of the Classics. However, trying as hard as you possibly can is the same for me as it is for Matthew Hayman, Fabian Cancellara or Johan Museeuw. But it’s not really the effect of the physical effort that has me so disillusioned. Where has all my power gone? I’m not going to find it staring down the drain of the shower tray.
Without wishing to turn this into some kind of Tarantino-esque chronological shitfest, let’s step back nearly two years and the finish of the Liège-Bastogne-Liège sportive ride, 25 April 2015. Fans of the show might recall we covered that little jaunt in some detail back in Issue 7 in our feature “Ricecakes, Rain & Ratios”. (You can read it in our archive here). 279 KM (170 miles) and 4,500 vertical metres (15,000 feet) had me in bits that day. In the immediate aftermath I sat slumped in the corner of the organiser’s hall with the other finishers, totally spent. I was shivering almost uncontrollably - just could not get warm. While the rest of our gang celebrated their triumphant ride with beers, I sipped silently at a coke hoping the sugar would re-invigorate me. Frozen, empty and destroyed by the effort.
Struggling at Liege-Bastogne-Liege Sportive, April 2015
Just three days earlier I’d had my first venesection. Therapeutic Phlebotomy (TP) if you prefer. I had my blood drawn. As medical procedures go it’s a pretty straightforward one, but if I’d known then what I know now, I would never have attempted such an ambitious ride so shortly afterwards. I’ve learned a lot about my body in these last twenty-two months, since finding out I have inherited a genetic disorder that can lead to potentially life threatening complications. It’s a lot easier to talk about it now that it seems I’m coming through the other side without any really nasty issues and should, all being equal, be fine.
Let me explain. Towards the end of 2014 I went to my local doctor’s surgery to see my GP. I didn’t really have any obvious symptoms. My regular GP was not available so I explained to the locum that I felt like a fraud - there wasn’t anything really wrong with me, I just felt lethargic, lacked energy and was constantly tired. He looked over my records. “Normally I’d just tell you to book a holiday and think about changing your job [I was travelling a lot for work at the time], but since you’ve been here only once in the last three years I can see you must feel something really isn’t right”.
Maybe I was lucky he was a temporary replacement GP - by chance one who was a keen mountain biker, and we talked cycling. He seemed genuinely empathetic towards my predicament, perhaps when others would have dismissed me as a timewaster. He ordered blood tests for more things than I recall. Cancer, diabetes and thyroid issues, amongst others, were all investigated. I’d never even seen a needle before and don’t mind admitting I was terrified at the hospital as I felt that ‘sharp scratch’ of the cold steel point entering one of my veins for the first time. Little did I appreciate then that it was a sensation that would become commonplace in my life from that moment onwards. I don’t even blink now, even when they bring out the big bastard needle that leaves a hole the size of the Mersey Tunnel. The needle that even one of the nurses admits she doesn’t like the look of.
It was a nervous wait for the test results. I’ve never really been properly ill before, aside from a bit of man-flu or the occasional sore throat. How I now appreciate what a blessing that has been. What if I actually do have cancer? After three long anxious days and sleepless nights waiting, the phone rang and I was summonsed back to the GP surgery. Anyone who’s been in this situation knows they don’t tell you the news, good or bad, over the phone. Not even a hint. This practice cranks up the tension to fever pitch and the lack of emotion in the receptionists voice convinces me they want to deliver the bad news in person, to my face.
However, the news was on the whole relatively good. I was in the clear for all the big scary immediately life-curtailing stuff. But there was just one anomaly, a raised ferritin value. Nothing conclusive, more tests would be required. This went on for a while, I will spare you the to and fro. Eventually I was booked in for a genetic test. Apparently these are not cheap, so they don’t usually do them unless they need to. Another nervous wait ensued as those results were analysed, before eventually getting the call to go back to the GP to be told I had a dodgy HFE gene. Two mutated copies of C282Y to be precise, one from my Irish mother and the other from my British father. If you inherit one or other, then it seems likely you will just become a carrier. If you acquire both however you are probably going to start loading iron sooner or later. After several months of investigations it was finally confirmed that I, along with one in 200 others of European ancestry, have the inherited condition Genetic Haemochromatosis (GH). Or, if you prefer, Iron Overload Disorder.
The bottom line is my body seems to absorb perhaps four times as much iron from diet as people without the mutated HFE gene. That in itself is not such a big deal. The unused iron is stored as ferritin, which the body needs to draw on from time to time to generate new red blood cells. But once that ferritin store is full, the iron takes itself off to other places in the body where it isn’t supposed to be: the heart, liver, pancreas, brain even. Unchecked it is thought to cause a host of major complications such as diabetes, arthritis, liver damage and cancer. Oh, and ultimately that means, death. Yikes. Shit just got real.
The most positive element of my diagnosis was that it seemed, whilst my iron levels were more than double where they should be, they were not at a level that had as yet started to cause those grim complications. A scan of my liver suggested it was in pretty healthy shape. All the more remarkable given my Celtic roots. The prognosis was that with some immediate and on-going intervention I could expect to lead a ‘normal’ healthy life. Whatever that is.
Not a great deal seems to be known about Haemochromatosis. Consequently there is a lot of conflicting advice with regard to how best to deal with it. The clearest and most consistent advice that I received was that venesection is the most effective way of quickly reducing levels of stored iron. I was prescribed a very straightforward course of treatment. Weekly venesections of 500ml (one pint) of blood until my levels reduced to such an extent that I was no longer at risk of complications developing. At such time the venesection intervals could then lengthen and I would enter a period of ‘maintenance’, i.e. keeping the levels where they had fallen to, with venesections only required to prevent levels rising back up to the danger zone again.
And so, many months of weekly venesections commenced, just days before I tackled La Doyenne - the toughest of Ardennes Classic routes. It’s hard to describe the impact this has on one’s body. Of course, many community-minded citizens donate blood regularly and suffer no obvious side effects. Give blood. Lie down for 15 minutes. Have a cup of tea and a biscuit, and then get yourself back to work. But as I later discovered, athletes are advised never to give blood during their competitive season, such is the impact on the body as it works to replace the lost volume of blood. Okay, I’m not calling myself an athlete, but you get the point. And for health reasons, in the UK men are not permitted to give blood more than once every twelve weeks (sixteen weeks for women). One venesection without Liège-Bastogne-Liège is probably ok. But that combination, and then the subsequent weekly visits to the hospital literally drained the iron - and the energy - out of me. After only a few weeks I became anaemic and the bloodlettings were suspended while my haemoglobin recovered.
I have to stress that the NHS nurse who looks after me, and her team, are fantastic. I can’t fault the work they do and I feel safe in their hands. It’s a fact though that I still struggle to get consistent advice that makes sense to me, especially in relation to diet. On the one hand I was advised don’t eat red meat. Stop drinking alcohol. Avoid spinach and other leafy greens. My consultant on the other hand told me to eat and drink whatever I liked within a ‘normal healthy diet’ (again, whatever that is). My nurse told me to “eat rainbows” (that was a fun meeting). Stay active I was told. Ride your bike as much as you like. Business as usual then? I wanted to continue to train and race - but I couldn’t. I was destroyed. I was getting very anxious because I’d entered the Anfield 100. A 100 mile Time Trial on May Bank Holiday. Following the L-B-L experience I was worried it might end in tears, with me at the side of the road unable to continue. What the hell was wrong with me? Why can’t I do this?
I gathered information from anywhere and everywhere and read as much as I could find. I talked to everyone I could think of. Usefully, I have contacts in the cycling industry and at pro teams. People I could talk to about diet, nutrition and the hitherto obscure world of haemoglobin, haematocrit and red blood cells. In desperation one day I called an old mate who was working with a Pro Team. He immediately connected me to his team doctor. By complete chance, the doctor knew about the condition I have - one of their athletes has it too. After a couple of emails a Skype call was quickly arranged. It was the best thing that could have happened. She quickly told me, until you reach the maintenance phase “Tempo is your new Max”. I will never forget that phrase. Nor will I forget the reaction when I explained I was planning a 100 mile time trial a few days later.
Why are you doing it?
Err, good question. Because it’s there.
Will it be there next year, or the year after?
Will you let anyone down if you don’t do it? Are you being sponsored to raise funds for a charity?
Then, I think you have your answer. If you do it, it’s going to be horrible. You will suffer terribly, and you won’t be able to perform at the level you want to. You will feel awful and you will be demoralised at your performance, which will make you feel even worse. Why do that to yourself?
Despite having the form of my life, I didn’t ride the 2015 Anfield 100. Instead I went to watch my mates suffer, and made a pact with myself that I would be back one day, and not as a spectator.
For the following 18 months tempo became my new max. No road racing, no time trials. No intervals. I rode my bike and enjoyed riding for enjoyment sake alone. The highlight was probably a week touring around Ireland in the summer of 2015. But as good as that has been, I have missed pushing myself. I don’t like to think of myself as being a really competitive ‘Alpha’ type. But I do like to push myself to my limit and I enjoy that feeling of getting fitter. For me, feeling really fit is the time I feel most alive. So the last two years have been tough mentally. I’ve felt a bit like I’ve been treading water, going around in circles. And just like the granny in the movie Parenthood, I’ve always preferred the rollercoaster to the merry-go-round.
At times over the past two years I’ve felt my treatment was stalling. I wasn’t reducing my ferritin level as fast as I hoped. Every few months things seemed to plateaux. Perhaps my body was just entering a recovery mode. When I look back now though, on the whole the levels continued to fall steadily. By October 2016 I was told treatments could go to three-monthly intervals. I tentatively started to think about a return to training. The eight (okay, nine) kilogrammes of weight I’d gained were playing on my mind, as much as my belly. Into November and I was riding the turbo a few times a week to get the legs used to a bit of action. And the waistband on my jeans was becoming a little more comfortable.
When I went back for a blood test at the start of December 2016, to my surprise, and delight, I was told no treatment required. My values were still low enough - come back at the start of March - they said. Okay, game on. No venesection for six months. No feeling crap and not being able to train intensely. This was the first time in nearly two years I had a clear training block available, uninterrupted by the bloodletting. I started to push on and add a bit of structure to my training efforts.
By January 2017 I was brave enough to think about a power test. I’d been pushing myself a little bit harder week by week. “Comfortably uncomfortable” as my mate Joe so neatly puts it. I was invigorated at being able to elevate my heart rate above tempo and sweat a little. Session by session I could feel my legs and lungs coming back to life. Slowly.
That brings us back to the shower cubicle in the bathroom next to my garage, and what felt like an eternity of contemplation as to the whereabouts of my missing watts. A good 10% has vanished since April 2015. The lost power plus weight gained has not done much for my W/kg ratio. However, I have a plan, to rebalance both sides of that particular equation.
A few years back I read a book called Once and For All, Weight Loss for Life in Four Steps. This was a real eye-opener. Before that time I really didn’t know much about how the body works and why we gain weight. By applying the advice of the author I promptly lost ten kilos. (I’m not telling you how heavy I was before). Nowadays I can pretty much lose or gain weight whenever I want to. I know exactly what I need to do to lose weight and I can steadily lose 0.5 kg a week without living like a monk, as long as I’m training every other day or so. I’m not necessarily saying I like doing it, just that I know what I need to do.
At least, that was the case before the GH diagnosis. My body has been through a bit of turmoil these past two years and I’ve altered my diet to significantly reduce my iron intake. I’m still playing with that, and until such time as I have been in “maintenance” for a while I think I may still need to make adjustments to get the various levels balanced. My consultant tells me not to bother changing my diet - that I can have this “normal” healthy life without and major sacrifices. And I guess that’s where I have to challenge what is “normal”? The NHS might be great at keeping people alive, but they are not training athletes.
Now that my iron levels are down around where the hospital wants them, I want to try to maintain them through diet alone. Conventional advice says, live your life as ‘normal’ and take the venesection every few months. But I don’t want the venesections. They wipe me out and mess with my training. A friend who is a prominent sports nutritionist made me laugh recently. I told him about some dietary advice my nurse had given me. “Oh aye”, he said, “and how would your nurse manage on your Club’s Thursday night chaingang?”. And that really is the point. There is nothing wrong per-se with the advice given by my GP, nurse and consultant. It’s just that when I discussed the same subject with the Pro team doctor she encouraged me to experiment with diet - give it a go. She told me her athlete with GH maintains his iron levels through diet - it is possible for some people, not all though. She was very frank. “You are going to have to manage this for the rest of your life. You will never be more motivated to try with diet than you are now in these first months”. Powerful words. She was also keen to remind me also that whilst my condition is serious; it’s not all bad. “There’s only one athlete I’ve ever worked with that doesn’t need to supplement iron to cope with the workload”.
So now there are a ton more numbers for me to have swishing around my tiny brain cell. The levels of heme and non-heme iron in everything I consume. Not only that, but the various food combinations that either accelerate or prohibit the absorption of iron as I aim for 50-50. That’s 50 Serum Ferritin and 50% Transferrin Saturation.
I’ve taken the first baby steps to getting myself on the road back to fitness. These early interval sessions seem to hurt more than they ever did before, but I’m confident that’s just me needing to MTFU and my body will gradually acclimatise and improve.
January has been about establishing the baseline and just getting back in the saddle. February is where the real work starts for me, and the infamous Liverpool Century Speedruns. A sequence of four successive and consecutively tougher training rides, the final hour of which are conducted at race pace. The first one is approaching this Sunday, and come rain or shine, I will be there.
I’m not sure if this is the same mid-life crisis that started with me staring at that fat bloke in the mirror 14 years ago, or if the sudden and unexpected realisation that I’m not immortal has kick-started a second one. One thing I am sure of though, it would have been a lot easier to just buy a convertible. Nevertheless, I’m expecting 2017 to be a rollercoaster of a ride. Welcome aboard.
Information on GH from The Haemochromatosis Society
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