Venesection

Hi Stacie32

Ferritin isn't iron and it can climb with a cold or a tooth ache. Itscyour transferrin saturation tjat is the best guide but many do not do it. A lot of us go up then down then back up. It takes each person different time to unload. No one size fits all with this I am sorry to say but if you are being treated itvwill go down eventually. Two days previous double your water intake then repeat. Eat a big meal before venesection, a brisk walk to the clinic take an extra layer so you get warm quick after then treat your selk to a frothy hot choc and your favorite treat. If you do those things your blood will run freely and replace its self quickly and you will be fine. My consultant said only read https;//haemochromatosis.org.uk/ it has everything you need to know and is the best and latest info there is. Good luck you will get there if you follow the simple guides you will be good in no time. They aim for 50 iron 50 TS for maintainance. Diet before maintainence does help but basically only eat wholemeal ! never white flour all of it has been doctored with extra chemical iron, by law, the raw fish, clams, whitebait and sea food stuff is out forever also. Do not take vitamins unless the doctor has offered them. Nearly all have vit c and iron, or drink orange juice especially with food, as it transports iron into your liver. But the rest very little very occasionally will keep your diet balanced. More vitamins than iron. I wish you the best, you are on the right track now so chill you will get there. X

I don't know what is going on regarding H63D.  While I am homozygous C282Y, my husband is homozygous H63D.  This is much less aggressive.  Never the less, his ferritin was too high and it was not from fatty liver or any other inflammation.  He was venesected until he was de-ironed (<50) and after being treated for Hodgkin's Lymphoma, he no longer loads iron.

France ignores H63D and there is a report that those highly involved in HH are to internationalise HH treatment.

However, it is lucky that you are being treated with vx for your pct.  Your haematologist is very correct to say not to try to eat a diet avoiding iron.  Your body still needs iron to have a healthy haemoglobin which will enable you to have your vx.  Just avoid foods that are fortified with iron.  Iron occurs naturally in every food.

A vx will eliminate the iron in 50 red meat steaks, so there is not point.  Any other efforts have negligible results to ferritin.

Also it can be impossible to second guess the number of vx you will need.  Your ferritin levels will go and down.  Leave it to your haematologist to know as he sounds like he knows something about HH.  Their job is to read your blood levels and act accordingly.

You will eventually get to 3 monthly or even 4 monthly maintenance.

The Australian Haemochomatosis Association has great instructions to help you with vx.  Unfortunately, it is in their latest newsletter which is available to members only.  Woohoo!  I have been able to copy and paste it!  I see that some is out of order, but you will get the gist of it.

"Tips for a successful venesection

Making the appointment

• If possible, pick a time that suits you. Choose a time when you won’t be rushed or stressed. Some people prefer mornings, others afternoons.

On the day before

• Get a good night’s rest.

• Make sure you’re feeling well.

On the day

After the venesection

• Take it easy

• Have a snack – something salty is good.

• Have a drink – water, cordial or energy drinks.

When you leave the donor centre

Do

• Drink plenty of fluids the day before, especially in warm weather. Have at least three glasses of water in the three hours before. Your blood volume goes down a little when you have a venesection.

• Keep the bandage on for at least 2 hours

• Continue to drink fluids – at least three glasses of water or juice

• Eat something salty in the 12 hours before. You lose about three grams of salt with each donation, so this is your chance to eat something salty, like chips guilt-free. Have a good meal in the three hours before.

On the couch

Take a music player with your favourite music and headphones. There’s nothing like a little distraction to take your mind off things.

Do these muscle exercises before the needle goes in or comes out, before getting up, if you feel dizzy, hot or nauseous

Cross your legs

Squeeze your inner thigh and abdominal muscles

Stretch your ankle

• Hold for five seconds then relax five seconds. Repeat five times then switch legs.

Don’t

• Stand for long periods (sorry, no window shopping on the way home). Avoid long queues, crowded public transport or standing on long queues

• Get overheated. Stay away from hot showers, sitting or standing in direct sun, and hot drinks.

• Do strenuous exercise like riding, jogging or going to the gym.

• Smoke for at least 2 hours

• Drink alcohol for at least six hours

After a venesection, the body uses Vitamin B12, folate, iron and protein to make new blood.

People undergoing frequent venesections during the initial de-ironing phase of treatment may find Vitamin B12 and folate supplements helpful to boost the ability of the body to make new blood cells and cope with the process. You can seek advice from a pharmacist or your GP.

Thanks to Dr Barbara Bell and the Donate Blood website for the tips.

— Australian Red Cross Blood Service "

I hope this helps.

 

Hi Stacie i have to have ferritin infusion as I have mycotic anemia and my infusion has to be down to 10.0 which is 100 .when I have that my levels come up quite quickly .