RLS and Hemochromatosis

[hscarangella]

I have had RLS since I was approx 8 years old (I am not 80). Caused insomnia my entire life. Just last year it was discovered I had hemochromatosis with a ferritin level of nearly 297. I had one phlebotomy and the ferritin dropped to about 170. I read this should not go below 100 with RLS but the doctor wants to do anyother phlebotomy (they seem to know very little about RLS and hemochromatosis. Should I insist I do not want it done?

[Madlegs1]

Unless you are suffering damage from iron accumulation-- liver, heart, joints etc, then I would be slow to go too low with your ferritin.

I was at 1400, and after 2 yrs phlebotomy, got down to 140. I'm happy with that and will take no further action, apart from getting ferritin levels checked occasionally.

I never experienced any relief in rls symptoms.

There can be a danger of iron avidity if levels get too low. I don't understand the science behind it-- I had iron overload rather than HH.

A good site for information is the Iron Disorders Institute.

Good luck.

[Hidden in reply to Madlegs1]

Phlebotomy! - my wife says I need one of those, I can hear her now:

"You are mad, pity someone wouldn't drill a hole in your head and give you a phlebotomy!"

[Madlegs1 in reply to Hidden]

Love it.

Like going to the flims of a sat evening?

Keep well.

[Hidden in reply to Madlegs1]

Are you asking me out?

I don't like going to the cinema any time - the people talking always drown out the people rattling their sweet packets.

But if you want to take me for dinner I could manage that

[Madlegs1 in reply to Hidden]

Last time I was at the flicks was nearly 50 yrs ago, snogging in the double seats at the back of the cinema. Can't remember the flim, but the girl beside me is now my wife!😍

[Hidden in reply to Madlegs1]

My wife and myself were kicked out of our local cinema for getting a little passionate in the back seats, how were we to know we shouldn't have been doing it during the matinee of Shrek?

[Madlegs1 in reply to Hidden]

All a load of Fairy stories!🤪🙄

[Hidden in reply to Madlegs1]

Priceless repartee

[Hidden in reply to Madlegs1]

I'll have you know there was just me and the Mrs, well and the Christian Youth Choir but they were there to see the movie - honest.

[Madlegs1 in reply to Hidden]

😁

[bluteco in reply to Madlegs1]

Can you help with my blood test, I’ve been so panicked, reading about these high levels on the Internet.

white blood count is 9.60

red blood count is 5.38

Hemoglobin 15.0

Hermatocrit 46.1

Ferritin 201

[Madlegs1 in reply to bluteco]

I'm really sorry, but I'm not an expert on blood.

If you have concerns, check out the Iron Disorders Institute- Google it.

They have an email conversation going all the time-- just cut and paste your post onto an email to them. Some really good bods there- know anything to do with iron and blood readings.

Good luck.