Red Palms

Excellent thanks for the advice Tom. i guessed it was one of the symptoms called Palmar erythema.

Hello Chelle, I also get very hot feet. Even sitting in my office my feet get quite hot.

thanks Sheryl you have so much knowledge worth your wait in gold great advice indeed

i have three sons eldest just tested after an operation he is free of it TG

Hi Tom, free of HH do you mean? Your son has to be heterozygous at least. As you have 2 genes, he would have inherited one.

As you know, being heterozygous means he will not load iron because of HH, nor have the symptoms. Thanks to his mum.

From my personal observation of people I know who are heterozygous, and also alluded to in some European research, heterozygous people have strong constitutions, ie. more healthy than most, live longer, best at sport, etc.

Thankyou Sheryl, You may be able to answer a question for me. I was diagnosed with the CY28 and D63 genes, My doctor wasn't too concerned as he said the HH I have ins't the most agressive and my Ferritin Levels would rarely get over 1000 with these mutations but as a precaution he wants me to do 5 Venesections (Blood Donating) over 5 months. When my Doctor first tested me my ferritin levels was at 784 my Dr told me to lay off the booze and the red meat which I did, and to come see him when back from working away. He ran the same blood test and my levels had dropped to 686. My question is how quickly can these level rise and fall and is this horrible back and hip groin part and parcel of HH? thankyou everyone for helping me understand this.

Because I am homozygous C282Y, and my husband is homozygous, our son is compound heterozygous C282Y/H63D same as you.

When he was 22, he had a ferritin level of 772. They did not do TS% back then. He started off a month of weekly vx, then fortnightly for a couple of months, then 3 monthly. His levels dropped pretty quickly with that regime. The aim is to get ferritin down to <50 in order to get all the ferritin out of our organs.

He stayed on 3 monthly for a little while to evaluate that his ferritin levels were stable, then moved to a maintenance level of 4 monthly.

Your dr is correct in saying this combination is not so aggressive as homozygous C282Y, but is more aggressive than homozygous H63D which is barely recognised. My husbands ferritin at diagnosis in his early 50's was 554, and it was necessary to go through a similar vx regime until his ferritin was <50. France does not even bother with homozygous H63D. In that case, those with these genes should donate blood without saying anything about haemochromatosis and high iron levels. Their blood will not hurt anyone, it is just a mindset.

I had been donating blood before and during the 9 years of severe symptoms undiagnosed and they said they loved people like me because I had a high Hb! There would be a lot of undiagnosed people donating blood.

It is a good idea to lay off alcohol while in this de-ironing stage because it causes a fast track to your liver. However, it is now not recommend to stop eating red meat if that is what you usually do (just not everyday), as you need to keep a healthy level of haemoglobin to enable you to have these venesections. And keep eating your greens as well.

Go to Iron Disorders Institute, click on Helpful Forms and Charts, then Haemochromatosis Reference Charts. Print and show your dr regarding HH Management Protocol if he is hard to budge.

During those 9 years, I also had severe pain in hip, groin and length of leg - unbearable while trying to sleep. At the end of those 9 years, my left hip broke up from osteo-necrosis. I was told my blood was so thick with iron particles that they blocked the finer capillaries of my hip bone and the bone died. That was how I was diagnosed. 6 weeks after having that hip replaced, my right hip broke up.

So your pain should not be ignored, and should be investigated (start with an x-ray) even though your compound C282Y/H63D is not as aggressive as compound C282Y. We do not always travel textbook style, so there are variations of the norm.

Let us know how you go.

First para, my husband is homozygous H63D! Somehow that disappeared.

Hi Sheryl

Pleased to report my ferretin now down to 113 after starting at 1200 on august

weekly phlebotomies done the trick and expect to me in maintenence regime very soon

i have found that I am suffering ftom more aches and pains, back, hip, neck muscles

appreciate your view if this is part of the de ironing process as mine has been very rapid

pain in back hip and neck making movement hard

any thoughts from your vast knowledge greatfully appreciated

thanks TOM

Hi Tom - you should be upgraded to 2 monthly by now. Weekly is too often at this stage.

I could not say that so frequent vx at this stage is causing your aches and pains though. The main issue that gets affected is your haemoglobin.

I don't think I have mentioned Vit D - you may need this. You can have a blood test for this and Vit B12. If you are really low in Vit B12, it is best to ask for injections.

If you are low in Vit D - look for a practitioners' brand of Vit D3 forte drops. Insufficiency in this can cause aches and pains and a lot of other issues. Try them even if you are not too low.

Calcium + other minerals is very important. My husband's dr suggested glucosamine 1500mg + chondroitin for his hip and knee pain (beginning of arthritus). About to start on this.

See if these make a difference for you. A French team of researchers suggest CoQ10 (need good brand of this) and Vit E to help undo the damage to the molecular structure of cells by HH.

Maybe some of these will alleviate you issues.

fabulous advice again many thanks will try this meant to tell you i have the other classic rusty withdrawal sympton

ringing in ears! although mine is the hum of an airplane !

will get those tests done many many thanks

best to you both

Done my first VS this week, then flew back to mines. I am home to do my second one in two weeks then I do them weekly. 6 minutes it took them to suck 500ml out of me so I didnt have to spend a lot of time in the chair. The Red Cross Doctor suggested I go and have a liver scan. I spoke with my GP and he said because my level was less than 1000 there is no need for a scan and the a hemo special would tell me the same. So he is going to just keep me on V/sections and will test me after christmas again.

hi

pleased to report after 14 vs now down to 50 am told now onto monthly vs after a blood test next week m

great if only for the groin and back pain id be happy

You might need to ask your phlebotomists to slow down the speed of removing your blood. It may be causing you to become light headed and not enough oxygen. What are your observations like after vx compared to before vx? Any irregularities, e.g. BP, pulse, oxygen?

Obs were ok i think. Bp 120/80 which never really changed my pulse was about 80 which also never really changed. I did get a wee bit giddy when i first got up but it passed pretty quickly.