Anyone suffer from haemochromatosis or have high Ferritin levels?

[Chancery]

I discovered recently that I had high ferritin in 2018 and that I may have it still (awaiting test results). I checked back old blood tests and I've only had ferritin measured once before and while it was within limits then, I noticed it was already quite high, and that was back in 2016. Now it's gone over. While investigating reasons for that, I discovered people who suffer from RLS often have high ferritin levels, which led me to wonder if anyone on here actually has iron overload, or haemochromatosis, to give it its posh name.

It's known that RLS sufferers have inadequate iron in their brains, which would indicate it's not reaching there, i.e. iron absorption/use is not working properly. Iron Overload is that in extremis; your body's not using the iron and it's just building up and building up until it makes you sick.

Anyone have haemochromatosis, or suspect they may have it? Or do you just have high ferritin levels on your blood teats? If so, do you get any kind of treatment for it? They use blood letting to treat it in iron overload. I would be interested to see if that helps RLS!

[Madlegs1]

I'm not sure about high ferritin levels causing rls. Certainly a link with low levels for some people, but not everyone.

I had high ferritin (1400+) after extensive body surgery, but it did nothing for my rls. Obviously didn't find my brain ( perhaps because it's tiny?)

I have had phlebotomy/ venesection over the last 2 yrs to get my ferritin down to 130 now, which I'm perfectly happy with, though the vampires want to take me down to below 50.

No way, Jose! I do not wish to become iron avid.

My rls remains as always.

If I trigger it with unsuitable foods, I get it. Boom, Boom!!!👹

[Chancery in reply to Madlegs1]

Hi Madlegs. No, it doesn't cause it but it is correlated. I found it on a list of 'causes of high ferritin' but the list was quite clear that is shows up quite often in people with RLS, not that it was a cause. I'm guessing (wildly) here that it's probably because in some people with haemochromatosis their bodies are not using the iron properly, hence it not reaching brain cells and causing RLS. However, that probably isn't always the case in reverse. There's probably more causes for RLS. I haven't asked the question in reverse to see if Iron Overload sufferers have a higher incidence of RLS. That would be interesting....

[wairoa36]

Yes, Chancery, I have high Ferritin-- now over 800 .

It has been rising slowly but surely every year for years, and yes, I have haematomachrosis and no-one is in the least bit concerned about where all those extra red blood cells are being deposited. They refuse to do phlebotomy.

I had one GP who thought a reduction might help my rather severe rls but no- one would agree so here I am .

At my ripe old age of 83 I feel lucky if anyone helps me with this debilitating and exhausting disease, and feel lucky to be this side of the sod every waking day!

Picol/ Wairoa

[Chancery in reply to wairoa36]

Oh that's a shame, Wairoa. Do you think that's just ageism - you're 'old' so you should expect ailments, or did they think you were too frail to handle it? Either way it sounds like ageism!

[kesss in reply to wairoa36]

Hi Wairoa36,

Why no phlebotomy?

800 is what I had at 49 yrs and they took me straight to the blood letting room just after they told me I had haemochromatosis and 800 level. They said the ferritin levels had to come down right away. I had a pint off every week then every two weeks until they got it down to 50.

Now I am on 'maintenaince' and get blood off about 4 times a year.

I had hot feet & tingly feet (RLS) when trying to sleep for 9 years before they discovered the high iron levels / haemochromatosis.

I still have the RLS / hot feet / tingly feet when trying to sleep even though my iron levels are now 50 ish.

The hot tingly feet are definately better than they were when my ferritin was 800, but it still often keeps me up at night like tonight.

The hot tingly feet are very excercise and diet dependent.

If I get loads & loads of excercise - eg 24 mile hike - I can more of less get rid of the RLS over subsequent days. But who has the time or energy to do that sort of thing more than may be once a year?

Also cutting right back on sugar / glucose helps a lot. Definateley I am sensitive to refined sugar and refined sugar can set it off the hot burning / tingly feet even during the day. When I take sugar I now try to take cane sugar only.

I'm working on my diet so I can get energy from food without having sugar.

During the night when I get RLS drinking water can help a lot.

I'm off to get my bloods done in the morning - they check for ferritin (iron) / transferrin and haemoglobin check.

Hope your as well as you can be given you're 83.

Cheers

[kesss]

I had tingly or hot feet for 9 years that prevented me sleeping.

I went to the gp and on the 3rd visit in those 9 years they did full bloods and he got interested in iron levels. I though it was the onset of diabetes. They tested for that. It wasn't.

Turns out I have haemochromatosis; iron leves were 800.

After phlebotomy (fancy word for them taking a pint of blood off at a time) the iron levels are down to 50 ish. [BTW they have no idea why 50 is a good number, just thought i'd throw that in there].

I get a pint off 4 times a year and the haemochromatosis is well managed.

So I got something for nothing ish. I mean the reduction in iron levels from 800 to 50 helped my hot tingly feet a bit. Straight after a phlebotomy and for the next day or so I have deliciously cold feet at night - BTW they only ever get hot and tingly at night - ie like right now in the middle of the night - and I have to do something daft like typing on a forum to distract myself - but after that day or two they revert to their same old hot tingly night time nightmare.

I am certian it could be controlled by diet, but I eat with too many ppl / to varied to get much of a handle on it.

Excercise, when I get time, definately helps. A lot of excercise, like becoming a gym freak helps a lot, like the hot tingly night time feet more or less goes away. But who has the time for that. Personally I find the gym is exausting - or may be that is just my easy excuse for being lazy. But honestly, where do ppl get the energy for that, even twice a week?

I have read that deficiencies in vitamins D, B6 or magnesium can cause 'RLS' problems.

I feel like life is so complicated without creating a permutation table with all the possibilities of suppliments I could test take.

One thing I have also noticed is that my Dad, who likes pork, and who I eat with frequently has on and off gout. It does not seem to compute with him that purine is not great for gout. I sometimes get sharp sensations in my big toes, especially after a pork binge with Dad, and I suspect purine is also not good for hot tingly feet.

BTW tonight is the first time I really made the connection between RLS and hot tingly feet / haemochromatosis. I mean I never really knew there was this 'RLS'. I think I read about RLS before but what ever I read then just did not sound like what I had / have.

I have no idea if 'RLS' & hot tingly feet and haemochromatosis are conncted with each other or not.

It seems to me like after 9 years and 3 visits to the gp I got something for nothing.

Haemochromatosis and no solution to what I went for: the hot effin in bed feet.

Excuse me, Cough,

.. and no follow up either. 3 gp visits over 9 years for hot feet and all I got was haemochromatosis and no deliverance from the thing that actually bothers me ! You have to laugh really !! chortle.

Lifes weird eh.

It's like going to the bank for a mortgage and they give you a house and say "the house is free no mortgage needed" but it's a dog and definateley not the property that you wanted. This unwanted house needs unwanted maintinance 4 times a year, Chortle.

BTW it's of some interest - to me anyway - that at about the time the hot in bed feet started, I twisted my right ankle badly. Really really badly. I'd nevr sprained my ankle like that before. I didn't know you could do it that bad. The ankle took 3 years to come right. It was swolen for days after I twisted it and before I got someone to look at it. By that time the opportunity to ice it was lost.

When I went over it, it was to the side while carrying a heavy box of papers to a meeting. My foot went down a hole on the street and over itself to the side.

I often wander if a nerve is trapped in my foot and it's as simple as that; in the same way that when you have back problems and the sciatic nerve can be trapped - though when that happens the back never gets hot in bed and the chiropracter seems to be able to fix it.

If a nerve was trapped in my right foot why does it only become very irritable as I try to sleep?

.. and why does the left foot - although less so - mirror the irritation / heat in sympathy?

Something to note; the hot feet tend eventually go away through the course of the night and more often than not - nearly always - wake up in the morning with placid comfy feet.

Actually, I'm just remembering that I often get hot feet in the evenings when tired, and recently resorted to wearing my trainers throught the day without socks to let the heat out of my feet. Sockless actually helped.

A very definate hot feet trigger is to much sugar / glucose /carb anything.

Especially sugar / glucose. I have recently cut these back significantly which has helped. I've found that I have to be especially careful to avoid refined sugar in anything. It could be that sugar, being an irritant, irritates the nerves in my feet.

If I eat lots of cheddar cheese sandwiches - who dosent - the flats of my feet start burning. I get a burning tingling sensation on the flats of my feet. Who knows what the mechanism there is. Is it lactose in the cheese? the Fat? who knows ..

During the night when I get RLS drinking water can help a lot.

Also if I do some pushups and squats before going to bed it really burns any excess calories and this can really help reduce energy levels too making my feet less susceptiable to heat discomfort.

Usually the hot feet starts as soon as I am in bed and relaxed enough to sleep. I then start flicking my feet to 'dispel' the heat / extra energy away from them. Or that's what I feel I am doing anyway. It distracts me rom the irritation, so I do it. I also stick my feet out of the bed to cool them off. This helps the most, though it often leaves the rest of my body cold. The irritation in my feet can last from 15 mins to 3 hrs. Usually I manage to find a place/ way to get to sleep through it. Not tonight though. It was the full 3 housr or so. They are cooling off now.

I am starting to work on my diet, but wait. Oh no. As soon as I try that guess what? I get tossed a plate of carbs from somewhere. I've come to the conclusion that a managed diet is almost impossible.

I actually want to get away from meat as the idea of industrialised slaughter appauls me. It would certianly get me away from pork.

I did have a had a meal system but that was recklessly tossed out, even though it was a start at careful diet management. I reckon the way forward possibly has to be a meal system, where if I go out I take my own meal with me, but it's just impractical to do that. Lifes to chaotic and short.

BTW I think the iron reduction slightly reduced my sense of fatigue and also reduced brain fog. I definateley feel my head is slightly clearer without all that iron poisioning.

Also when I get a pint of blood off I sometimes feel really weird during and just after, though not always. Last time a few weeks ago I barely noticed anything during or just afterwards, though as usual just after the pint of blood off I had cooler feet.

I've been tee-total for 25 years - I was never able to tolerate alcohol - so it's not an alcohol related problem. I've never had recreational drugs, so it's not that either. I am not a smoker. I'm not on any medication for anything, so it's not any side effects of anything possible there either.

All your ideas appreciated.

Cheers

[Chancery in reply to kesss]

That's really interesting, Kess. I used to get really hot feet and shins as part of my RLS - what are the chances? Sometimes my shins used to burn so bad I would scratch them raw. Like you, I used to stick my feet out to try and cool them but it never worked. Another trick I did was to push them against the cool wall. This did a double job of cooling my feet but also of restraining the twitchy legs. Because I'm careful what I eat and drink now, I don't get that level of RLS any more. Thank God. My triggers are caffeine, sucralose and chocolate. I can tolerate 1 small glass of a sucralose drink, but if I was to, say, combine it with a bar of chocolate, I'd be in big trouble. For me it's all a question of quantities. Except for caffeine. Even decaff triggers it, or it can. Mine can be a bit rogue!

Mine's is also triggered by both a lack of exercise (if I don't get out for a day) or too much exercise (a very long walk is likely to cause RLS late evening). So it's moderation in all things for me.

Interesting that you mention sugar. I've seen other people list this but I wonder how you test it? Is it sugar in fruit as well as ordinary table sugar? And is it quantity related? I keep meaning to post on this topic to see how people know it's actually the sugar, since it is used in so many foods, and how exactly sugar 'irritation' manifests itself in their RLS.