Confused and worried

Hi, as i know nothing of your present health and aspects of your life i think that im sure your doctor is doing all the right things for you at this time. There can be other things with your health that can be causing the imbalance and it is prudent to take care in the begining to be sure you are getting the most benefit from whatever treatments, lifestyle changes etc that may help you.

That sounds pretty in line with how I started off. The initial blood draws were not very aggressive, because taking blood also has some health consequences. I think they want to to see how things go after the first few. I think I started out monthly for a couple of months first. So don't think they will automatically start off taking blood aggressively. I do remember in beginning the process and wanting to get in and make progress as soon as possible. I definitely can relate because I was going through the same exact thing! It took what seemed like forever to get started as I hated knowing it needed to be done and I couldn't get it rolling.

That's exactly how I'm feeling.  I just want to get in and get it started and it seems like it is taking forever and the worse I feel physically the more impantient I get.

 

Since he's ordered the blood draws, will you start soon?

I meant to tell you since we have similar starting levels, I am happy to send you a graph of my progress over my entire course if you want to know what it might look like. Not a gradual linear drop. Message me if you are interested. I went in not knowing what to expect.

I was reading this thread and i'm interested to hear or learn what the progess looked like from the blood draws.  This is something that i'm worrying about right now.  I just had my 1st blood draw (500 ml) yesterday and they have me set for weekly blood draws.  My level was about 1696 ferritin and i'm trying to lessen my worry about how long this is going to take to get down the levels.  and does it go down slow initially and then speed up?  i was trying to figure out what you meant by "not a gradual linear drop".  Also, since i dislike needles, getting these blood draws has been anxious for me.  Any suggestions on helping get over that?

 

Hi Paul

I hope you don't mind me answering.  I have been having vx since 1998, weekly to begin with.  Checking my records, I averaged a loss of 44ug/L per week to begin with.  I don't have a record of my vx dates but after a while I was changed to every two weeks, every month, every 2 months, and finally when I had reached their goal, every 3 months.  One of my records show me jumping from 282 to 813 and I was put back on closer vx again and next blood test I was 63.  I found out later from more experienced people with HH, that my cold/flu at the time was the cause of the rocketing ferritin level, and really did not need to lessen the time between vx.  They did not test TS% back then either.

Theoretically, your ferritin level will keep reducing unless you have some infection, even as ordinary as a cold.  Alcohol consumption won't help you reduce your ferritin levels quickly.

When my haemotologist decided I could go 4 monthly, that was a disaster.  Chest pains again, arrythmia, ferritin rocketing.  I felt it was the wrong thing to do at the time, but he was the expert.  Then I had to go back to every 2 months for 2 years.  I do not allow him to lengthen the time between vx anymore.  I keep a spreadsheet of my blood tests and vx now, record how I feel at the ferritin levels, and I am in control of it now.  Except, that haemotologist has moved on, and I don't know how I will go with the new one.

If it hurts to have a vx, there is a cream called Emla which you apply a certain time before vx.  Just don't look.  I used to and the nurse would say I had 'wriggly' veins.  Biofeedback - trying to wriggle out of the way.  

Really, I look forward to my vx, to get that toxic stuff out of me.  It had caused a lot of health issues for me, because of lack of diagnosis and treatment for 9 years, prior.

I am sure you have read all the advice about having plenty of fluids and food beforehand.  I have a cup of tea while venesecting too.

As I am sitting among people having chemo for cancer, I am so happy to be having vx instead.  Much better than having chemo.

 

Thank you Sheryl for the quick response.  It sound like you have a lot of knowledge / experience with this.    I agree that if i can get my head around the thought that the procedures are actually helping me get the toxic stuff out, then i think i will feel less anxious about  the planned weekly vx.  

Do you know what the ferritin levels would "normally" go up each month if a person didnt have the blood taken out?  i'm asking cuz my 1st blood test showed ferritin of approx 1460 and then 1 month later it was 1690.  Thats a rise of approx 50 per week.   So my concern is based on the figure you mentioned (44ug/l) reduction per vx, if ferritin is rising more than that amt , what happens then to get the ferritin down?  Thats why i'm wondering (based) on bruce's post that he said the reduction is not linear.  Trying to find out if theres a reason for that.  

I saw wide swings in my ferritin levels in the beginning. It seemed that it would rise twice followed by a big drop. It seems, like weight loss, the higher the numbers the bigger the variations. My biggest drop was 800 points. My biggest rise was about 500. Remember the phlebotomies remove iron, not ferritin. Two theories for the rise: 1) iron stored from the organs is released into the blood as the levels in the blood drop. 2) the available iron is converted to ferritin in response to the drop in iron as the body perceives you to be losing too much iron. Private message me for my results by email. I dropped an average of 150 points per month, but the drop is slower as it does seem to be as of a percentage of the total.

I will add that like Sheryl, they cut down my frequency from weekly to monthly and it didn't go too well. Every other week has been good. I went from 4,000 to 550 in about a year and a half. Hopefully the needles will bother you less as you get used to it. If you don't look and try to stay distracted you don't notice as much. My vein doesn't like the needle and constantly moves so they have to jiggle it continuously.

First it would help to know the results of your genetic test.  If you are homozygous C282Y, this can be more aggressive than other HFE genes.  Also what your TS% is, which will also change too, but if it is >75%, it indicates how aggressive it is.

My haemochromatosis association says that 0.25 grams of iron are removed from the body via a standard 500ml vx.  This is the equivalent to the amount of iron in a 50mm nail.  Therefore, it takes 4 venesections to remove 1 gram of excess iron (4 nails), also one vx will remove the iron equivalent of about 50 steaks (depending on size of course).

If you have genetic haemochromatosis, your ferritin will increase in time.  Same if your vx are too far apart your ferritin will increase more than decrease.

If you are big around the waist, you most likely have fatty liver.  HH causes fatty liver and fatty liver causes a higher ferritin level.  You can address that problem by eliminating sugars and starchy foods.  Keep below 9gs in 100gs of starch (carbohydrates) for reasonably quick success.  Have protein with each meal and snack, and lots of greens, cauli - NO potatoes.  A protein breakfast makes a huge difference too.

While my weekly vx averaged 44ug/L, this reduced as time went on.  We are all different and have different results.  All you can do is experience it, and if you think your haemotologist is not being aggressive enough, say so.  Importantly, your haemoglobin must be >125 g/dL (or 12.5) before each vx.

A good website is with the Iron Disorders Institute, good information at Helpful Forms, haemochromatosis reference chart, and others.

Ask your local library for a book called "The Haemochromatosis Cookbook", not for the recipes so much, but for the chapters and chapters about why it is ok to eat almost everything.  Tea, coffee, milk, small red wine if your liver is ok, calcium foods (dairy), all help reduce the uptake of iron.  Avoid vit C, OJ and high vit C juices with your meals.  These increase the uptake of iron.  However foods that contain vit c (which is almost all veges and fruit) are ok and necessary for our health.

Read Prof Pierre Brissot for researched scientific data regarding this disorder.  Also Prof John Crowe from Ireland.  There are others but these are more up to date at the moment.  (I have spoken to both at one of the conferences I have attended, plus many others.)

When you google a particular issue, type e.g. brain and iron overload.  This will get you more information than using the word haemochromatosis.

I hate that jiggle that Bruce refers to, but just had to grit my teeth and smile.  I would rather they taped it and did not touch it.  However, for a long time my vx became more and more difficult with my blood being so thick and dark.  I would insist they keep trying and would come away with 4 new holes in me.  Not getting any answers from the medical people, I started taking a 100 mg of aspirin per day.  My blood immediately flowed easier and better and I actually felt a lot better, as if this process got the iron that was stagnating in my cells moving.

Love those venesections!  

 

After my 1st 12 phlebotomies, my ferritin went from 1,000 to about 1300. with the saturation going from around 70 to close to 90.  After 2 more years of bi-monthly and then monthly phlebotomies, the ferritin is now down to 30 with the saturation % being 12.

Thats great to hear... was there a question that you were asking of me ???