Haemachromatosis

Not something I know much about so had a quick search and found this.  Maybe useful
https://www.haemochromatosis.org.uk/

I know a couple of people diagnosed with it in their 40s/50s and, other than regular bleeding at a clinic to remove iron from the blood, lead active (football, cycling), regular lives. My OH used to work in the NHS diagnosing it and says that it isn't anything to be particularly concerned by if you follow medical advice.

My mate lives with it and has no problems, just has to put up with the regular blood removal. He is fit as a fiddle, no issues with riding or running etc. I think it's a very manageable condition 👍

Edit to say he's in his late 40s

Thanks, that's good to hear. I hope I'm i a similar position, no indications of problems, mildly symptomatic at the moment, but there's been very little information or advice about what I can or can't do while in overload, whether I shoud be resting, or just carry on as my body allows.

I fel like a bit of a fraud on the facebook advice page, everyone else is talking about massive ferratin levels of 1500+, they're talking about their issues like cirrhosis and I'm looking to post about being able to ride my bike!

thanks for the replies.

Let the blood-letting commence.

How is Gilbert's syndrome good for your liver? I have this (mildly) and thought the positive of higher bilirubin is that it's cardio-protective. Is it something specific with the bili interacting with ferritin?

Sorry to hear about this Wookie, but glad to read that it is manageable.

How is Gilbert’s syndrome good for your liver? I have this (mildly) and thought the positive of higher bilirubin is that it’s cardio-protective. Is it something specific with the bili interacting with ferritin?

I may have it back to front tbh, so I think you're right.

The gilberts is either a common co condition with haemachromatosis, or the elevated bilirubin is a response to it, from what I've read its not clear why there is the commonality between them, but yes, it's one of the reasons the primary organ of concern is the liver.

Gilberts doesn't always come with haemachromatosis though, which is why it's thought it may only display like Gilberts.

excercise is supposed to lower ferratin, but also I read that it can condition your body to not rely on normal oxygen transfer. I've not looked in any more detail than that in the journals, but I'd guess it's like increasing anaerobic threshold, sortof. .

guess that's fine if you're not in overload, but the last set of bloods, my transferrin saturation was 99%. so I have loads of iron, but not a lot of available iron.

I've been keeping things pretty steady on the bike, an hour of moderate riding, 2, maybe 3 times a week. went out sunday for a couple of hours in the woods and legs felt strong to push up sharp climbs, and could spin ok, but in between effort just felt like I was breathing treacle, which sort of makes sense.  Will be leaving riding till I feel like i've recovered properly.

Waves to lovewookie, off for a Venesection at 4 this afternoon, I also have high Haematocrit so if its not the iron its the high red cell count meaning another draining.

Along with all the complications from my Thyroid going haywire, AF & Central Sleep Apnea! I'm getting fed up with blood being taken 😮

I don't have the markers for hereditary haemachromatosis either.

I can imagine.

my hereditary haemachromatosis was picked up about 5 years ago from an Ancestry DNA add on thing. I however, held it in the same light as the other ancestry stuff as a bit of a guestimate, so did nothing with it. hindsight and all.

it suggests I have 2 gene copies, so a high risk of developing haemachromatosis, but you know, feels a bit odd going to the doctor, without obvious symptoms and saying, I got this test of teh interwebz....etc. plus I'm male, so don't do doctors unless a limb is hanging off, don't want to bother them as they have real paiteints, etc etc...

well, not quite that bad, but it has changed and I use my doc a lot more.

My old man was diagnosed with it a good few years back. Lots of fatigue and took ages to diagnose but basically he went from being quite active to needing a nap as soon as he did anything. Took a long time to diagnose.

From what I recall, they took a pint of blood a week for a few weeks then dropped it back to monthly and then very rarely but it doesn't cause him any issues now. I've asked about it a couple of times from a hereditary point of view and been told on both occasions not to worry about it unless I get symptoms.

From what I recall, they took a pint of blood a week for a few weeks then dropped it back to monthly and then very rarely but it doesn’t cause him any issues now. I’ve asked about it a couple of times from a hereditary point of view and been told on both occasions not to worry about it unless I get symptoms.

that's realy interesting. I thought the 'early management' was key. but I'd guess you just need to keep an eye on fatigue levels, especially as you age (no idea how old you are BTW)

I was mid 40's and diagnosed with Haemochromatosis 5 years ago.
The fatigue was the main symptom, I just couldn't rest and recover. I saw a great doctor who was on the ball and ordered a gene test early on. The rest of the family were also tested.
Treatment consisted of blood letting 450ml every other week until my ferritin levels were at normal levels, which took a few months. The tiredness took a similar time to improve. Now the treatment is donating blood every 12 weeks, which has kept my levels steady so far.
Hope you get started with your treatment soon. 👍

I used to (as an onco-haem) nurse regularly relieve patients of their excess cells. Most of them thrived after the first few instances, when bloods normalised. It sounds like they've been fairly on the ball, you sound fit otherwise, and I expect you'll be fine.

*Waves*
That's me.
Brother has it, dad has it, in fact of 36 cousins, 28 have it. I was diagnosed 3 years ago, and it took until Christmas 2022 before I needed treatment.

I've got my Venesection next week. Currently on bi-monthly after initial two months of weekly. So far, I'm feeling more energetic. BP has come down and other indicators are good, but it needs to come down more. I'm intrigued to see where I settle with Venesection. My bother does fortnightly and has been for about 4 years.

Curse those Irish genes of mine...

@matt_outandabout great that youre feeling more energetic. I'm looking forward to that! currently feeling like I've got vertigo and not a huge amount of capacity.

genetically I'm a bit all over the place. Mums side is welsh, but I always thought that my dads was English, but no, norman and scandinavian and  a lot of scottish, traced back to shetland.

bloody celts.

😉

Mums side is welsh

Same here - I've memory of my great gran in Welsh bonnet and heavy Welsh accent. Turned out her family were Irish emigrants in the last of the famines...

And I've Scottish (Gunn clan) genes on my dad's side, who apparently also had a thing going with the Irish.

So for our family it's come down both sides, hence why so many of us have it.

General gist among the few cousins I have contact with is it's perfectly manageable, if frustrating you need to vampire yourself.

Still in lmbo.

Had specialist appointment a week ago, but it was more bloods and a bit more of a thorough examination. Genetics not back yet, so they can't make a diagnosis and start treating without it. So, another appointment at the begining of August.

I'm taking that as a good thing as it's not an urgent appointment based on what they've got so far.

I've now been hit with Covid though. First time since the start of the pandemic. I don't really get out that much, so it was either picked up at a meeting I had last tuesday, or the hospital on the thursday. It's not pleasant and although the covid now is't the beast it was, I'm still a little concerned of any impact of iron overload whilst trying to recover.

I guess that managing to recover from the fever relatively quickly is still a good sign.

Ugh, the COVID is bad luck, sorry to hear that. Hang in there.

Sorry to hear that, COVID sucks.

I've just had 500ml of blood extracted this morning at the hospital - the good news is my levels mean I might be on 4-monthly 500ml or 250ml, instead of 750ml every month that I did through the winter.

Thats tough luck Wookie hope you recover well.

I’ve just had 500ml of blood extracted this morning at the hospital – the good news is my levels mean I might be on 4-monthly 500ml or 250ml, instead of 750ml every month that I did through the winter.

That's great news Matt.

Covid does indeed suck. vomiting friday, fever saturday moving to a sinus thing sunday and spikey fever, that dissipated, left sinus blockage and I could feel it creeping into my upper respiratory tract over monday and tuesday. fever has largely gone, apart from the odd blip, but I've shared it with my wife, cos I'm nice like that, so she's a couple of days behind me symptomatically. I'm feeling OK, just residual head cold and cough feeling, so not to bad all things considered.   oh, and the lack of taste/smell, not as clear cut as some have reported, but it's odd. Soup is just wet and lumpy, rather than flavoursome.

problem with limbo, and my ASD head, is that I've little way to filter out what the possible outcomes shoud be, or how to weight them. so I end up, regardless of any evidence of non urgency I get from the GP, and now from the specialist (albeit they were Speciality registrar), I go down the worst case. if I can deal with the worst case, then can deal with anything, apart from worst case is pretty catastrophic, so I get very very anxious about it all.

Last bloods results I had I was fine with, for a day and a half, then I had a proper panic meltdown over the phone with the GP. I don't think he was expecting that based on the person he'd met and discussed things with. I do mask very well.

Thank fully I've now become a member of Haemachromatosis UK and will use their specialist nurse advisors if I have any incidents like that. It feels a little safer now that I have a route for knowledgable and experienced individuals. Might not stop me tying myself in knots the odd evening, but at least I can park it for a bit knowing I have access to information.

currently it's, 'what if genetics tests show i don't have genetic haemachromatosis?' weighing up the likilihood of a premature death either from kidney failure or leukemia. lovely. But I also don't really want to phone and find out.....as my big boy pants are in the wash with the other covid stained stuff.

My cousin, in his 50s was diagnosed after symptoms including fatigue. From there on, genetic testing is ongoing through the family. I (female, 50s) have two genes for it but fairly normal iron levels. My male cousin has been going through the regular blood letting and from his strava I can see he's riding his bike pretty regularly again. A female cousin (50s) is also on the regular blood letting route.

I had an opinion from an haematologist that haemachromatosis is a genetic adaptation which gives an advantage to populations where getting enough iron rich food is a problem. He offered up a suggestion that if I didn't have the genes for it I'd probably be anaemic but in fact I'm just very efficient at managing on low iron intake. Who knew. I am careful about iron intake though, to the extent of carefully reading the labels on bread as both non wholemeal bread and also cereals are fortified with iron.

I had a couple of weeks of stressing and looking at my diet, even though I probably didn't really need to.

@lovewookie - I have it, was diagnosed a couple of years ago, due to my sister finding out she has it.

I'm more than happy to have a chat about it, for you or anyone else - open invite. Send me a PM if you want to talk / email etc.

It's really quite simple once you get past the "bizarrely dumbed down hence more complex than it needs to be" information that's generally shared.  Diagnosis beyond the SeFn (blood iron level) lest is a genetic test which it sounds like you are waiting for the results from.

Re Hemochromatosis itself -

Treatment is basically very enthusiatic blood donations. My SeFn level was about 1,500 when diagnosed - normal range is more like 50 ish from memory.

I did weekly venesections (just a medical term for blood donation) - needs to be at a hospital and then did regular checks of levels of all sorts of things and the normal recommended frequency for donation is once every 12 weeks. It was a bit tiring for a while - your body is permanently diverting energy to making fresh blood (which uses up iron, which is the whole point).

Once it's down so normal levels it's just a check every so often and in my case I donate blood every 12 weeks - no different to a normal enthusiastic blood donor.

As part of initial diagnosis they will also check for liver, heart function etc and it's likely to have an MRI scan to look for any deposited iron.

facebook advice page

I've learned to ignore those. A lot of people blaming just about everything imaginable on Heamachromatosis and advising all sorts of wierd diet and supplement tips.

The advice I've been given it to eat a normal, healthy diet and let venesections control iron. One VS is worth something like a hundred steaks or some other odd measure.

@whatgoesup thanks for the offer of a chat, that's much appreciated.

I’ve learned to ignore those. A lot of people blaming just about everything imaginable on Heamachromatosis and advising all sorts of wierd diet and supplement tips.

yeah, I looked, then decided that it was an end of the spectrum that I wasn't at, so didn't look anymore at that.

I'm just looking forward to when I can get back out on my bike. thought I may have been abe to last weekend as I was feeling OK, but then covid....

still, I have a wheel to build, some bearings to change, maybe more tyres to sell, clear out the shed, fit some new smoke alarms in the house..

Quick visit to the doc today to look at genetic tests after quite a few weeks wait. Confirmed I have two gene copies for hereditary haemachromatosis.

Specialist appointment in a couple of weeks, hopefully they'll start to bleed me soon...

Feels like I've lost summer. Don't think that I'll be getting much of this one either.

Hey ho. This bit of time is at least allowing Mrs wookie and I time to consider campers.

stared treatment last week straight after the specialist appointment. had my second venesection yesterday. They seem to be going OK. yesterdays was worse than the first, feeling pretty tired afterwards and into the evening, had nearly 9 hours sleep last night and feel OK today. not great, but OK.

one unexpected thing though, when I first had my ferritin tested a few months back, I was up at 811 or something, in the end of june, at my first consultants appointment, it was measured at 836. last week I had bloods done, 2 weeks post end of covid's 2 week symptoms, results in yesterday and ferritin was over 1200. My goal is to get it between 30-50 so an even longer way to go. maybe.

We think that, as I had covid, that dramatically increased my ferritin levels as an immune response. There's plenty of information out there to back this up too, although I don't like readng about high ferritin in deceased people due to covid. gives me the fear.

Its not been flagged as an issue, I've now, to date had two units out, so hopefully that helps. I'm also hoping that there is a natural rebound of ferritin post covid and it wont jump and get stuck if I get it again.

back next week for more bleeding..

Apparently my ferratin was all over the place through December and January, when I first started and was on weekly venesection. I don't know the figures.

Now though we seem to have settled - around 45/50.

Now on quarterly venesection.

I have just had my second liver check with the weird flicky finger machine (fibrascan?) and apparently it is good.

I have just had my second liver check with the weird flicky finger machine (fibrascan?)

ooh, not been told about that. just an ultrasound, but a flicky finger machine sounds almost erotic 😉

I'd guess it's a slightly more advanced version of percussive technique.

Apparently my ferratin was all over the place through December and January,

good to know it's pretty normal, the nurses did say that they can fluctuate quite a lot, but I guess in my case covid didn't help.

Interesting…

35 years old, been dealing with fatigue issues every 6-7 weeks getting slammed and laying in bed all weekend with fever like symptoms. Thought it was due to dresses of job/new baby/COVID after effects but after after the 6th or so time sick and off work for a week I was marched to GP by Mrs Explorerboy.

GP sent me for bloods and suspected glandular fever. Bloods came back and I’m 60% over the max for iron levels and need a re-test. It’s not something that runs in my family BUT I’ve stopped taking a multivitamin with added iron and feel much better in myself overall…

That's interesting, I hope they get to the bottom of it.

You say no family history, but I've none as far as I knew either, I'm the first to be diagnosed.

It’s not something that runs in my family

We didn't think it did until my brother had health screening for a job. This triggered all cousins being tested, and at last count over 3/4 of us have it...

Worth waiting for a few more tests and views on things.

Good news is that it's very easily manageable.

4 venesections in now. It's going ok, weird, but ok.

2nd seemed to be the most tired after, 3rd not so bad, 4th went well, ferratin now back at 860, so pre covid levels. Was a bit tired the evening after it, but the day after I was floored. Felt like I was being held down in my bed.

Thankfully I'm on annual leave for a bit so can chill.

I was fine the next day though.

Riding the bike has been intermittent.

First ride I did since venesection started was a bit of a shock.

Normal hour long loop I do before work, got halfway round and had to turn back. Just nothing in my legs and HR rocketing pretty quick to 170+.

Figured if that's how it is, let's try something a little steadier. I can do a pretty flat 6 mile loop straight from the house.  It's 50% tarmac canal path and 50% single-track.

I've done that twice this week so far. Both times aiming for a steady ride. Both times feel ok for about 10 min or so, hr is up at 170+, then levels at around 150-160, which is still more than I'd like. But then there's no push in my legs. I can turn them, and probably put in a bit for sharp short effort, but just turning the cranks is all there is. They feel hollow.

I'm not surprised really, it's just weird the stark contrast, even from when I was staring to feel off. However, a pint of blood off a week, kinda makes sense.

Post ride I feel like I've been out for hours, not 30 min. Noticed that I'm more dizzy after standing up from seated, which lasts a couple of hours post ride and feel a bit wonky for a little bit.

Next ride will be much steadier, keeping an eye on the HR, and keeping under 170 to see if that helps, but it may just be what it is.

Consultant did say that going for a ride is ok, but I'll discuss with him more when I see him in a couple of weeks. Helps that he's a cyclist too so understands what value cycling has to me and appreciates what a normal ride is.

Normal hour long loop I do before work, got halfway round and had to turn back

Hopefully things will improve, maybe next time you'll get 3/4 of the way round before turning back 🙂

Sorry, nothing useful to add, it just made me laugh.

I had similar issues immediately after having my first Astra-Zeneca booster, extreme fatigue, brain fog, I couldn't remember how to drive to places I went every day, terrible ocular migraine, a range of GI issues initially I could only describe as a sicky hungry churning feeling later followed by extreme pain and unexplainable bleeding.  Bloods showed my iron levels were through the roof but came back down gradually, genetic test showed I had one of the genes so was prone.

I perhaps stupidly allowed myself to be talked into having the next booster by medical professionals and guess what? Much better now but never got completely back to normal.

Sorry, nothing useful to add, it just made me laugh.

Haha. Yes, not quite what I meant. But halfway on the outward bit!

When I was doing weekly venesections I learned to go to bed REALLY early on the day I had it - seemed I needed a lot more sleep that night, otherwise the next day was pretty rotten.

I got into a pattern of biking towards the end of the cycle, i.e. nothing for a couple of days after a VS, very gentle for the next couple of days and a more "proper" ride in the day or two before the next one.

After posting up there somewhere about my dad having had it, looks like I'm heading for the same diagnosis!! I've been struggling with shortness of breath and chest pain for the last few months when exercising and whilst I'm first to defend the overworked NHS and GPs, they have been shit in this case. Finally got some bloods done after weeks of being fobbed off and high ferritin over the trigger point for haemochromatosis (but not massively high). Blood test wasn't valid though as apparently I should have done a fasted test and no one told me that. So more bloods required and then prob referrals. The shortness of breath is usually a later symptom I think but it's exactly what my dad had apparently - feels like I can't get a proper deep breath and if I exercise hard my airway feels overstretched and burning.

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 🙂

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!)