Gilbert's Syndrome
5 watchers
Jan 2024
2:35pm, 8 Jan 2024
316 posts
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MAG
Anyone else out there with Gilbert's Syndrome and active runner (or alike)? I was diagnosed 18-24 months ago and been struggling of late with tiredness and energy and yesterdays XC race (which i look quite easy) wiped me out for the day. This was not normal 18 months ago, I had a rough spell last winter (tiredness) and similar this winter I am wondering of others have this experience?
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Jan 2024
2:38pm, 8 Jan 2024
30,029 posts
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fetcheveryone
Apparently I have it too (as does my dad), but in our case it is symptomless aside from an elevated level of bilirubin. Will watch the thread with interest. I hope things work out for you.
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Jan 2024
4:55pm, 8 Jan 2024
98 posts
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LS21
Hello, I've got this as well, yes. Diagnosed with it about 10 years ago. Not sure anything specific helps as I do feel pretty tired a lot of the time (although I'm Marathon training, so there we are!) But I've found eating well, trying to get a fair bit of sleep and not really drinking help me quite a bit. So all the usual boring stuff. I don't eat paleo as such (I have bread pretty much every day), but it's paleo-esque other than that. I've also learned to steer clear of doing challenges or whatever where you have to run every day. Marcothon, RED January or whatever. That totally wipes me out. I do do a fair bit of mileage but I seem to be able to handle quite a bit in a concentrated period, then say have 36-48 hours off, then go again. Possibly not relevant but do you supplement with Vit D at all? I tend to go pretty high in winter (a lot higher than the RDA) and I think that helps with tiredness. Possibly placebo, not sure? Also following the thread with interest to see if anyone else has any ideas. Good luck though - I hope you're feeling better soon. |
Jan 2024
5:29pm, 8 Jan 2024
6,158 posts
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Windsor Wool
I’m 50 and was diagnosed in my teens after the symptoms of my glandular fever just never seemed to clear up. I’m not running any more but when I did my body would give me a signal that it needed a rest from time-2-time. I’d never really associated that with Gilbert’s tbh. My kryptonite is alcohol. Always has been despite numerous attempts to improve my tolerance! Does Gilbert’s become a ‘thing’ or is it something we carry with us through our lives? Could it be that you have something else underlying? Or is your training gone up a level to the point where you are hitting some kind of limit? Apologies I can’t be more helpful and that my thoughts come from a ‘have it but never really impacted my training much’ perspective. Will also watch in a hope to see you get something more useful…. |
Jan 2024
6:05pm, 8 Jan 2024
4,329 posts
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Goofee
I was diagnosed with Gilbert's in 2005 and do have sometimes quite extended periods when I have reduced energy and my training takes a knock, your descriptions ring bells with me Unfortunately I was also diagnosed with haemochromatosis (iron overload) at the same time, so it is impossible to know which of the conditions is the main cause. Although I was told that GS was symptomless at the time, it just meant raised bilirubin levels, a bit of research suggested that plenty of those with the condition did report fatigue issues, which I believe is now more widely acknowledged. I have found my best training method is do to as much Z1/Z2 volume as possible, very little fast stuff (sometimes a hard parkrun each week is too much), taking serious note of when fatigue seems to be building and then backing off for a while. I just wish I was sensible enough to stick with this plan long-term and not get carried away when things are going well! 😊 |
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Jan 2024
6:07pm, 8 Jan 2024
4,330 posts
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Goofee
I also completely avoid alcohol.
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Jan 2024
11:29am, 9 Jan 2024
317 posts
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MAG
All very interesting comments, and certainly some ringing bells above. Ill do a proper job and describe the last few years where symptoms have certainly become noticeable. Its probably time i started to diarise my ups and downs, ill do the best from memory. I think there is certainly things to learn here from others experience and share my own. Thanks for the comments so far. Ill respond/update soon.
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Jan 2024
9:05pm, 9 Jan 2024
22,909 posts
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ChrisHB
I have it. My GP said it was symptomless and untreatable and was just a quirk in my body, so I'm interested to learn that it can have effects. I'll find out more, but not tonight.
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Jan 2024
2:21pm, 11 Jan 2024
318 posts
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MAG
Start with some background. I am 44 and have run for well over 10 years and consistently aside from groin injuries and hernia issues. At my peak I would run 6 times a week (2022) and going out for 4 hour hilly jogs for ultra training was at one point the norm. No issues off the back of it. Now I admit I have not fully come back from my latest hernia op last summer but the weekend just gone I ran a hard parkrun and what needed to be a steady-ish 7 mile XC race the day after. It needed to be steady as I had a niggle and well I was a bit tired! Come Sunday afternoon I was fighting to stay awake, really fighting it. This concerns me. I rarely sit down, most of Sunday I sat in a chair trying not to sleep. I did get a stomach and headache bug middle of November which nocked me too, but it knocked me for 6-7 weeks. My 6 y/o son had it, so I know it was a bug and it lingered with him but no way as long as me. There were times over that period were I was in bed for 7/7:30 and very few days did I say awake beyond 9pm. This is not normal. We joked one night when I son tucked me in!! (not very well I might add). I blame Gilberts for my body taking so long to fight it off and how rubbish I felt during. Reading online and on this forum the key seems to be working out what does not work for someone with Gilberts. Well we had Christmas and there were days I over indulged. I think I learned that Baileys Irish Cream is a no go, my body was struggling to process that the next morning as I laid awake. Alcohol in general is a no. Every year I don’t drink In January, last year it lasted until a wedding in April and I don’t really miss it, but I do miss it when I miss associations. Have a curry, have a beer. Go to the pub, have a beer. I used to drink the odd bottle of wine (one or two a month) but that has stopped, I am thinking maybe aside for odd occasions becoming T total might be a wise move. Be a shame if so. Diet, we eat a varied diet, some good days the odd bad day, all in all enough fruit and veg to be decent but not exemplary. Probably average 4 portions of fruit (2) and veg (2) a day some days much more odd days less. I had a carvery a few weeks ago, big plate full and I knew it afterward for a good 10+ hours. Body aching and complaining its working hard to process the food. I have read to eat little and often, I think that penny is dropping. What is scaring me, is this. Around 2020/2021 I was running very often, feeling well, no issues with tiredness at all, since then I have been diagnosed with Gilberts (I went to doctors and they tested me due to my tiredness) and had 3 winters where most of the time I am struggling to have a life after work (IT Office based) and days where I can not operate after a couple of hard runs. I feel like the slippery slope is steep and slippery. Looking at my dates there is a cross over from running so well (Manchester Marathon Spring 2022) and the tiredness starting around or just before then (I was Covid vaccinated – queue conspiracies). I do not get the jaundice, although I do not look at well and vibrant as I once did. So supplements I stopped a multi vit, I see above about a Vit D supplement – ill try that thank you LS21 I am determined to get back to regular running (4-5 times a week) just hope I can manage it. Maybe I should avoid two days on the trot for now. Maybe I should cut out the fast (for me) parkruns for a bit and build up again. I do enjoy a lung busting effort on a Saturday morning, but I hear you Goofee |
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Jan 2024
3:27pm, 13 Jan 2024
4,331 posts
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Goofee
I was 42/43 at the time of diagnosis following tests due to an extended period of extreme fatigue (on one occasion I fell fully asleep at my desk, luckily the boss was very understanding). Your description of struggling through the winters is familiar too, when I am able to train fully (age and injuries tend restrict things a bit more now anyway) I am careful to go easy on myself through what I think of as the dark months. The length of time it takes to recover from illness also strikes a chord with me. The more I read of your story, the more I start to think that perhaps haemochromatosis is not the main cause of my issues (the experts have always said that once the iron levels are under control, which mine are, there should be no ill-effects) and maybe it is more to do with GS... |
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