Haemachromatosis support

[MoogooMongoose]

Hello,

I have genetic blood disorder Haemachromatosis.

Now in maintenance mode after venesections to reduce ferratin levels.

Just wanted to check in with anyone here who might also have this condition to share how you are coping with joint pain and fatigue.

Any advice or tips on blood donating scedule.

What does your health authority offer to support you with monitoring your condition? I have bi annual blood tests including liver and renal function as well as ferratin and Transferrin saturation.

Does any one else struggle with awful foot pain as a result? How do you cope? Pain relief or surgery? Any tips on nutrition and supplements?
Anti anti oxidants are important...any preferences?

Im a tough cookie who gets on with life but some days are hard.

Feeling lonely about all this.

TIA

I don’t have this but it is the family so I didn’t want to read & run if you’re feeling lonely.
My relative has biannual monitoring and if iron levels are elevated they take blood but all in they are in pretty fine fettle for their age.

They are careful with their alcohol intake but are not big drinkers anyway, and are also careful about the amount of leafy green, iron rich vegetables they eat but still enjoy a very varied diet.

To be honest they are probably in better shape than me and I’m 30 odd years younger! 🙂

You can donate blood via the normal blood donation service depending on where you are in the country. They allow you to donate more frequently that regular donors so you can give them a call to agree a schedule based on what your medical team say. This can make your donations easier and help others.

@MoogooMongoose

Hi! I have it, diagnosed in late 2023 with initial ferritin level of 1650, in maintenance mode since summer 2024. I still get bloods every 3 months and have phlebotomy (US term) if my Ferritin is over 150. Since my level got down I think I've been phlebotomized 3 times due to elevated levels and then bloods rechecked to see if they were back to normal, but none in the last 18 months. Obvs no NHS here, but my insurance pays for it all.

TBH I don't have any issues such as pain or fatigue. I was pretty asymptomatic before dx too, it was a fluke I was dx'd. I was being screened for something else and the doc noticed I hadn't had routine bloods for ages so she ordered full panels, ferritin being one of them. It took about 6 months of twice weekly, then once weekly phlebotomies to get my levels down.

Have you spoken to your Haematologist about your pain and fatigue? If your iron levels are normal the joint pain should go away if it's being caused by iron overload unless you have joint damage? Same with fatigue, unless you have tissue damage.

Diet and supplement wise, I tend to avoid beef but don't deprive myself if I want it unless I'm getting ready to have my blood tests. I won't touch organ meats, but I've never liked them anyway. I was told to avoid shellfish when my ferritin is elevated due to an 'iron loving' bacteria, but I pretty much avoid it all the time just in case. Other than that, I eat pretty much what I want but do avoid 'iron fortified' foods. I take calcium, folic acid and b1. My peeve is that I can't find a multivitamin that doesn't have iron in it!

It's a big rigmarole of permissions and paperwork in my location to do 'prophylactic' blood donations to keep levels down and only certain blood banks will take blood from HFE patients, which I think is a shame.

Thankyou for this im glad you were diagnosed and had prompt treatment to reduce risk of long term effects.

I do donate through the NHS blood transfusion service but its just getting the balance right as my ferratin went too low at one time.
Started at 1,300 at diagnosis pre venesections accidentally got it down to 57 which is a bit low.

Transferrin (The Transport Protein) has always been high in my case TSH for short. Sometimes 88%

Seeing Specialist next month so will raise concerns of foot pain to them.

Will discuss tissue and joint damage but dont hold out much hope for any help or support.

Its more of a "just get on with it" attitude here in the NHS.

We get 2 yearly follow ups here and twice yearly blood monitoring.

I dont drink much alchohol anyway and eat very healthily.Good Nutrition is important for longevity and disease prevention anyway.

It seems ankle problems are common if you are unlucky. Ive bumped into two people diagnosed with haemachromatosis in the last year with similar foot pain, one has had arthrodesis of her ankles.

Guess im just anxious about my joints deteriorating as im still working running a business and looking after Grandchidten too.
Thanks for your reply glad you are doing well.

Thats great to hear thanks for taking time to reply. Glad your relative is doing well.

@MoogooMongoose

I''m sorry the NHS seems to have that attitude. Telling someone to 'just live' with a chronic condition and chronic pain is simply wrong. I wish they were more pro-active for you.

I wonder if either PT or OT might help your ankle pain. I shattered my ankle many years ago and it's pinned and plated together. As a result I have had a good deal of PT and OT. As I've aged I do have ankle pain at times from that, especially if I'm doing a lot of walking. I have a soft ankle brace which provides support for my ankle and helps a lot. Can you ask for a referral?

I know the US system has its faults, but as soon as the test results came in I was sent to a haemotologist and a hepatologist within 3 weeks for the whole gamut of scans and tests to be sure I had no organ damage (all clear, thank God). Even now in addition to the bloods every 3 months, I see the haemotologist twice a year and will be seeing the hepatologist yearly for 5 years from dx, so until 2029. I think part of it is that my healthcare is through a university medical system and they are very interested in the latest treatments and are research oriented. I wish the NHS was as proactive for you.

Thankyou. Youve encouraged me to raise my expectations at my next hepatologist appointment and ask for help. I have a feeling he will just advise see GP which isnt always easy here in UK.

Ive paid for many a private appointment for myself and family over the years to fast track care.
As a result we have two beautiful little Grandchildren that would not exist without privately funded surgery.

So NHS is definitely developing a two tier system here in UK sadly.
Anyway ive gone off piste.
Thankyou again!