He also makes a mean black pudding.
Err..
@richoffrimley thanks for sharing, the more experiences the better. It's good to get a guage of what sporty folk go through with this.
🙂
Chat with the consultant last thursday. one more weekly then on to review for decreasing to monthly venesection.
ferritin on last measure a couple of weeks ago was down at 450. still a way to go, but getting there!
GI problems still there, off to see the GP about that, but think it may be iron overload and treatments exacerbating it. It's difficult to explain, but it's kinda like when you're about to faint, you legs drain of ability to hold you up. I get that after about half hour of riding when I've got an episode of GI bloating and soreness. Hopefully I ca get something that will help manage the symptoms.
managed a flat 15 mile hour on the bike yesterday and felt kinda done, but in an OK way. ave HR was 160 ish and max reported at 186. Quite high and didn't feel like I was putting in much effort until I was nearly home. Going to try another ride tomorrow, maybe lower pace though.
Good to see you can get on the bike and are thinking positively about it Wookie. It is all a bit pants when health issues hit, but you just have to keep on however you can.
managed a flat 15 mile hour on the bike yesterday and felt kinda done, but in an OK way. ave HR was 160 ish and max reported at 186. Quite high and didn’t feel like I was putting in much effort until I was nearly home. Going to try another ride tomorrow, maybe lower pace though.
Riding bikes is all the awesomes for health. I hope you can keep going and as ferratin comes down you can rediscover your energy - I know I have...
cheers, I'm wondering if that when I get onto monthly, my body will have more time to recover from having blood removed and I'll start to regain some feeling of strength and endurance. it seems to make sense to me, but, even though this time round the consultant seem to acknowlege the physical drain that regular venesections seem to have, her comments from the first meeting with her, that there shoud be no differences still stick.
Back in on Friday for another draining as iron levels were just within target but my Haematocrit would have me banned from competition at 53.5%
Have felt tired very quickly over the last month if I try to do any exercise more than an hour & that's only low level 🙁
Just out of interest how old are you fellow sufferers? I'm 58.
Also just for info resting heart rate 49 peak I can attain due to med's I'm on 146
I'm 49.
I'm 44. Still cracking on with the treatment. Been stuck on a ferritin plateau of 350 ish since early July even with weekly VS's, hopefully it'll resume it's downwards path soon..........!
interesting, what are the docs saying about that?
I had my bloods checked the other week, now down to 271 ferritin. have a chat with the consultant on thursday to decide frequency moving forward to get it to 50.
so after feeling really really rubbish last week, I think I was ill, palpetations, GI bloating, oh and a migraine that gave me arm and tongue tingles and had me at the docs sharpish......I was out on the bike on sunday for an hour, which was OK, but then decided that I'd do a fairly flat hour yesterday morning, as I was up and about early. Felt great, much to my surprise. I've lost strength I think, but didn't feel particularly fatigued when I got home and within half an hour felt normal, just the 'leg glow' you get from a workout. didn't feel like I was dying throughout the day either, so that's a bonus.
on sunday I was on max HR of 181, average around 160, but yesterday morining max at 174 and average at 144, which is more normal for me.
Hopefully this will continue.
Just out of interest how old are you fellow sufferers?
49. Diagnosed at 44.
Venesection tomorrow morning.
How are you getting on @lovewookie ?
Just had bloods this morning for annual MOT with the consultant. I know my ferritin is OK, but by blood pressure has risen and stayed there, and so might need to up my Losartan.
Also:
https://www.bbc.co.uk/news/uk-scotland-north-east-orkney-shetland-68155683
Im doing ok.
Well actually not that well tbh.
Been feeling overall rubbish from december. A couple of good weeks over the last couple of months, but the rest have been fatigue, GI bloating, large intestine pains, palpitations, back pain etc.
When im feeling ok, i ride, and feel like ive got legs, when im not so good, i may mamage a couple of hiurs a week if im lucky amd feel done. My philosophy has been do what you can with what you have. Though that is a bit taxing now..
No riding today though. Im curently writing this from my bed, where ive been since about 3pm as i feel a bit knackered.
On monthly venesections. Ferritin went from 450, to 280, to 220 and in december bavk up to 270. I have treatment next week.and as ive been feeling crap im interested to see how my ferritin was looking in Jan.
Have a liver scan consultation in a couple of weeks. The ultrasound suggested i have a slighly fatty liver, which is nice.
So that, and my bilirubin being consitently high ish, platelets being slightly low (they have been for the last decade at least) im going for a scan.
In honesty, with feeling rough most of the time, weird autonomic responses to excercise which id put down to my GI symptoms, but dont know, im shitting it a bit about having a liver scan.
Gp seems to think im healthy though, which is a good sign i guess, but theres always that possibility that something has been missed. :-/
I saw that news article too, it didnt help, but its the reality of it.
For me, there are no obvious signs something more sinister is going on, my gp and my wife, whos also medically trained tell me, so thats something..
(That made me laugh as it reminded me of 'my mum, who's a nurse' from jonny briggs)
We can only move forwards.
Liver Fibroscan done this morning.
he questionairre before hand had lots of chatter about fatigue, stomach area pain, etc and quite a concerned looking nurse.
fibroscan didn't indicate any damage, thankfully. A hell of a relief when there's a niggle that the symptoms are not just what the GP thinks they are.
Still a few bloods reaults to get through, but at least my liver hasn't hardened up. I suspect there will still be slightly high billiruben and slightly low platelets..
Had an interesting conversation with my consultant last time about bleeding. she asked if I bled easily. I replied, no, I heal up OK, no problems clotting, cuts aren't an issue etc. Then she said, ever had nosebleeds?
ah. I was thinking cuts, gums etc.. totally didn't think of nosebleeds as bleeding (!!). When I was a kid, all I had to do was turn my head too quick and my nose would pour. I still get 10min of drip drip nosebleeds a couple of times a year, they've definitely decreased over the years though.
Despite still feeling a bit tired, I managed to get out twice this week for an hour each. the last one felt pretty good, even though it was drizzling and horrible out.
maybe things are on the up.
ferritin isn't, it's hovering around the 220 mark for the moment, so steady down, but not jumping down..still feels like a way to go to 50.
I managed to get out twice this week for an hour each. the last one felt pretty good, even though it was drizzling and horrible out.
hey Nik, I saw that on Strava and had a smile, great that you were out. I've become a gravel and wattbike softy, must get over to Mugdock with the eMTB soon !
Thanks 🙂
I’ve become a gravel and wattbike softy, must get over to Mugdock with the eMTB soon !
well, at least you're getting the legs spinning and in some way enjoying it 😉
Mugdock is a slippery slip fest at the moment, just down to the damp and the exposed roots and rocks. The muddy bits are not too bad, at least you can point and hope to head in that general direction with mud...
I'm hoping to get out over the weekend for a couple of hours, may just do dumgoyne loop though to save the trails an extra tyre.
Consultants last week and venesection thursday there.
Feeling pretty knackered. Moreso than post previous treatments, and i wonder if ive picked up a bug. Seem to be picking up more since treatments started but maybe thats to be expected. Cant seem to get warm without wrapping myself in a duvet.
Last ferritin was 148, so this may be it, maybe one more then into maintenance, which feels a bit weird tbh, mostly as i was expecting to feel much better by now.
I suppose it could just take a bit of time to level out?
Definitely a sofa and film weekend.
It definitely wavers as your body gets used to the treatment and there are multiple interlinking things with blood....
Treatment last week. I took a long weekend so i felt like i get some sort of a weekend based off feeling utterly rubbish last tine.
Ended up not managing much at all, feeling off on friday and spent most of saturday and Sunday sleeping. Monday i managed to go for lunch with mu daughter, but that was about it. Been left feeling like ive got a cold coming, like a bit fizzy, noticable strong heartbeat. Seems to be easing slowly and energy levels are improving gradually, but it seems that the closer i get to target, the worse i feel after treatment.
Im undecided if its just triggering my ibs and weird autonomic response, or something else.
I did mention it to the nurses but they didnt seem that bothered.
Last feritin was 122.
Amother Treatment in a month.
May try a bike ride tomorrow., seem to get a good week and a bit between treatments, with the rest just a bit crap and not able to do a lot, which kinda sucks.
That sounds tough. It’s worth it though…
When doing weekly venesections I found that if I went to bed ridiculously early afterwards it helped. I’d do an 8:30AM VS, go to work for the day (office job) then be in bed at 7-8PM. When I didn’t do that it was a rubbish couple of days afterwards.
Your reactions sound more than that though / maybe triggering something else as you suggest?
Yeah i try to do that, rest after, bed early post treatment and an easy day after if i can. Seemed to make things a bit better, but since levels have dropped and ive moved to monthly its not reallly had the same effect.
I know that shitty feelings will pass. It does a week or so after treatment, but I'm keen to find out what is pretty normal.
well, the regular 14 mile slightly undulating bike ride this morning felt much harder than it normally is. not gubbed, but not bouncing with energy though.
My garmin told me aerobic effort of 5, and my ave HR was 150, where it's normally around 140-145. max of 175, where normally it get to 180 on that ride. so considering that, it seems about right for how I feel. not able to put in normal effort, but exersion higher overall than usual.
still, I got out, saw the comorants, the mergansers, the kingfisher and the glasgow wildlife 😉 and it helped with the, er, bowel movements...which was nice...:-)
think I forget I'm still in the treatment phase, not the maintenance phase and there's still a lot of iron being drawn out of various organs so it's really difficult to know what impact that will have on other things going on. 'stacking' is a phrase I've heard, where anything like venesection stacks on top of other things, making symptoms worse. So winter bugs and now leading into smelly plants season may have some additional impact.
Sorry to hesr things are a bit rough for you atm wookie. But I see some positives in what you say, there is still life out there for you to enjoy and you are doing so. Well done!
cheers, I'm trying to stay as positive as an old goth can.
Its venesection time again for me on Friday, Feritin was 101 and Haematocrit was 51. Slight complication is I'm on Warfrin with an INR target of 3 so it means I usually loose a bit more as it takes ages to clot.
Thankfully my liver test results came back much better.
Thankfully my liver test results came back much better.
that's good news.
my TSAT was 67% the last time it was tested, consultant said there's plenty more to come off, so I may be at this for a while longer....
https://www.bbc.co.uk/iplayer/episode/m001z0w8/morning-live-series-6-06052024
bit on heamochromatosis on this morning live. starts around 4:35
I had treatment last thursday, as usual, hit the wall around 7pm and have been a bit knackered over the weekend. Took this morning off work as I was still feeling pretty tired, but a bit of rest and I'm kinda OK.
Ferritin was 98 last time, so a few more to go. Consultant again in a couple of months, so expecting a change of treatments around then I hope.
Hayfever seems to be adding to the overall burden, but I feel much better now than I did the same time post treatment last month.
might get out on the bike mid week...:-)
bit of an update from me.
Saw the consultant last Thursday, ferritin was 63 a month ago, so another quick treatment, as I was there, and not prepared for at all! thankfully they have a stock of mini mars bars and lots of water so I wouldn't collapse from not having anything before it, happy days.
So this means I'm no every 8 weeks now, certainly until November anyway. and it'd been 8 or so weeks after the last treatment.
aside from some tiredness relating more to being bunged up from pollen, I've been feeling remarkably decent on the bike. managing 2-3 hours and a decent pace and not feeling like death afterwards. in fact, I've been feeling incredibly capable. fitness needs work, as does muscle strength I've lost, but with the push that I have got, I feel like I can probably do an all dayer, or at least a good 3-4 hours, which is pretty much all I used to be able to manage for solo rides!
However, treatment on thursday has knocked the stuffing out of me. weekend was a washout, wife was getting frustrated as I was more vague than normal and small efforts leave me feeling like I've been running. Steadily improving, building a water treatment system yesterday probably wasn't the best idea, but I had help thankfully.
Think I'll be OK to go for a ride tomorrow when the weather improves 🙂
update a year on from the last...
maintenance started 6 months ago and looks to be OK for venesection every 6 months now, which is nice.
I'd hoped for feeling 'better', but alas, it's not been the case. not sure why, nothing showing in bloods, but still get seemingly random bouts of fatigue and seem more prone to the impacts of viruses and infections.
late last year I was just feeling off. I'd ride for an hour or two, maybe 2-3 times a week and I was done. Anything more than that and I'd be stuffed for the following week and not able to do much.
This year started off OK though, re-evaluating what I can do and pacing more has helped.
I did have a rough start, tooth infection, 3 sets of antibiotics and then another infection which resulted in a hospital appointment as they thought I was at risk of sepsis. that took a lot out of me, about 6 weeks of infections/antibiotics and a good 6 weeks to feel anything near OK afterwards. That was a one off though and hopefully not something that I will repeat, though I am more conscious of signs of infection no matter how mild.
Something more consistent though is that I have now come to the conclusion that I have autonomic dysregulation, and has got more pronounced. not sure if the iron overload was a trigger, or if it's age, or a combination, but it's been getting more noticeable and may be what the issue was that led me to the doctors a couple of ears ago before the Hfe diagnosis. It triggers IBS, I have a problem regulating temperature effectively and sudden drops in blood pressure lead to light headedness and a draining of energy.
it's something that I've kinda had for a long time. always feeling warm, easily sweating, sensitivity to physical trauma (needle punctures, tooth extractions) leading to BP drop, sweating and in some cases fainting, but it appears to have moved into exercise trauma too.
I need to speak with my GP about it, but I think it'll basically be about managing by pacing exercise and managing where I am and what I'm doing (and who can rescue me!).
I could be totally wrong though and it may be something very different, but the bloods etc have not shown anything.
To keep moving forward I'm just adjusting my expectations of what a can do on a day to day basis and consider myself to be living with an energy limiting condition. it's not a huge change tbh though. I've been energy limited all my life to a degree, which I'd put down to mental fatigue from ASD, but now I have the tiredness creep into the sport I love, so I just need to pace that out the same way I've always paced out planning what I do on a day to day basis.
this has gone off on a bit of a tangent away from Hfe, but i guess it does highlight the combination of other things that can stack onto whatever the impact of iron overload has on your body..
I;m still riding though, and still enjoying it, though I've not quite got to the ebike stage yet (though it's part of the plan if things get worse, the really good prices on the orbea rise recently hasn't helped!)