Haemachromatosis

Blood test wasn’t valid though as apparently I should have done a fasted test and no one told me that.

That’s new. I didn’t have that but I gather they like it fasted if they’re checking diabetes?

I know what you mean about the burning. most often when out on the bike I’d reach that, but the amount of effort required to get there became much much less and I started to get dizzy and drained with it.

good that you’re getting it looked at. NHS here have done a pretty good job. The GP was thorough and dare I say, quite exited to get something different.

I’m still on weekly. The head consultant told me that I shoudn’t be feeling any adverse effects of venesection as I’m not anaemic. That any symptoms are due to ‘something else’ but then offered no advice on what to do about the ‘something else’.  The lived experiences I’m getting here and elsewhere seem to contradict that.

Also, the lab will now only process ferritin tests if you’ve not had one in the last 20 days. so limits tracking ferritin a bit. So far I’ve gone from 830, 815, 1200, all pre start of treatment and 875 a few weeks back. 7 venesections and only one in-treatment result. Hopefully I’ll get an update next week.

Seem to be starting to feel a little better, less drained and am managing 45-60 mins on the bike once or twice a week. Last week and the week before were completely different stories. very very tired at the end of the week and over the weekend, not able to sleep well, awake by 4am which just made things far worse.

Glad to hear your starting to feel a bit better lovewookie 🙂

My iron levels have remained below threshold for the moment, possibly as a result of drinking copious amounts of very strong tea?

And along with my Thyroid checks they said my Haematocrit level was just & I mean just 49.9% against trigger 50% in range 😮

Glad to hear that things are improving. My bloods came back with iron at a normal level so am hoping that it was just an overdose of iron due to the multivitamins ExplorerWife made me take every morning.

Just for general info, here’s my HH story so far. Hope someone finds this useful!

Fairly fit regular cyclists, 43 years old. I started struggling with regular exercise, so cycling to and from work which I did most days (15km each way on flat path) started becoming hard, particuarly in the evenings. I also have a nice flat 5km running route which I would squeeze into lunch breaks when working from home, I’d gradually been improving my times, then bizarrely started to find it hard about 2 years ago, then got to a point where I couldn’t complete it any more. I was worried I may be developing diabetes or something so I did a Numan blood test. It came back all fine apart from the ferretin leval of 1200 (think normal max is 200 or so). I was also very achy, hands and feet hurt, bad memory, etc…… All the textbook symptoms that I just associated with being busy/getting old.

Luckily one of my mates is a specialist in blood (medically trained, not as a hobby) and said it was very possible Haemochromatosis. I got refered to a specialist, had all the genetic tests, etc done and sure enough he was right.

Treatment has been as described above, weekly venesections. To start with these didn’t seem to have any negative effect, in fact I felt better after them which I think was probably the phycological factor of starting treatment. I’m on number 24 now (ferretin gone from 1200 to about 400 ish) and I feel horrifically tired. One saving grace is I am ok in the mornings so I get up and take the dog for a quick 5km jog at 6am before work. Evenings are a total write off, I get home from work and basically hit the sofa. Work is very tricky and I have to be very careful not to take too much on or forget things.

I think the draining (haha) effect of the VS really takes it out of the body, so think this is the dominant factor effecting me right now. I’m hoping when I hit maintenance levels and drop to less frequent donations I’ll be back to my normal self.

If anyone wants to chat about it, feel free to send me a message!

Mate in work has it, as above diagnosis took a while but he just goes for his regular blood letting and carries on with life as normal. He also makes a mean black pudding.

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 🙂