Frustrated with numbers increasing & don't know what else to do.. :(

Who says we keep good veins?  Sometimes phlebotomists go to the vein that is easy for them to get it over with.  I generally tell them to find somewhere else, there are plenty of other veins.  Ask if they have a portable ultra sound scanner to find new veins.  I have had venesections in the back of my forearms, in the middle of my forearm too by a very skilful nurse who knew there was a vein there, even though it was deep.

Those skilful ones have moved on now, and I now have to educate new ones.  Keep a firm bandage on your vx site for 24 hours and I have been told holding ice on it helps too.  I am usually too busy to even think of that when I get home from a vx, so I can't tell you if it works.  But it makes sense, as that is what one uses for a bruise, and a bruise is a haematoma.

I have had more than 100 venesections and have quite a few visible scars.  I point out those veins that no longer work, even though they can feel something there.  13 venesections into one spot on lower forearm above my wrist was easy for a while until my vein burst from one too many.

As for your ferritin level shooting back up to beginning level, do you have some other infection/inflammation going on?  Even a cold will do it.  Mine shot up by 800 points one time and I discovered it was because I had a cold when I was having the blood test.  Infections/inflammation increases our ferritin levels.  The haematologist then went overboard with increased venesections and next test I was down to 8!  I did not need that many.  When my cold was over, my ferritin level would have settled down itself.

I am sure you know alcohol does not help, but just saying for other people's sake.  I am wondering if you are female and your surgery was a hysterectomy.  This was what set mine off, but my dr did not diagnose me for 9 years until my hips broke up from osteo necrosis.  I was struggling badly with the symptoms leading up to my dx.  This was pre google, so I could not help myself in that department.

What you consume does not matter too much, with the exception of the very obvious.  For example, liver, clams (extremely high in iron), Vit C with meals, fruit juices with meals, etc.  Check the contents of some packaged items for fortification of iron, e.g. bread, milk, cereals.  It is usually advertised in large letters as if it is something good to consume.  To help reduce the uptake of iron, tea and coffee is said to help, but mostly anything high in calcium, e.g. milk, yoghurt, cheese.  I generally have these for desert. I also take a calcium tablet after dinner.  I also have eliminated sugars and starches from my diet, as these foods cause fatty liver which also increases ferritin levels.

I have since found out that we with HH cannot digest sugars and starches very well giving us stomach pains, and if we persist, it eventually leads to our pancreas not coping and then diabetes.

Have your Vit B12 and Vit D levels checked as one or another of these is generally affected by haemochromatosis.  Eventually I also found that a 100mg aspirin per day helped increase the flow when my veins started being difficult and resentful of being so  abused.

Overall, though, I am highly motivated to have my venesections as I want to get this toxic stuff, which caused so much bad health issues, out of me, and I tell the nurses to keep going and try somewhere else to get a full bag.

Good luck and think good thoughts about being diagnosed so early.

Sheryl,   100 removals      I feel terrible complaining about just the 7 I have gone thru so far, I can't even imagine doing it that many times..  Although, as I've been told this will be a lifetime thing but guess those numbers haven't hit my brain yet..   I had bladder surgery/repair, it really sucked going thru the jaundice issue that started the testing but I'm really happy that I did because we caught it early. Although, at times (mostly after the removal because I feel like crap) I kind of wish I didn't know so I wouldn't have to do it but I imagine that is normal.

Last Monday (August 14) I had the liver biopsy done, and my therapeutic was on the following Monday (August 21)...  Would the biopsy have caused level to go back up?

After the results came back of diagnosis I stopped my vitamin C, changed to multi-vitamin without iron, and still continue my vitamin D, complex B, and Calcium pills.

What do you mean by fortification?  I don't eat much bread but when I do I eat it it's sour dough or wheat grain, and I love my white pasta.. 

I second and third Sheryl’s advice about rotating the veins that are used!  When I was doing weekly phlebotomies, I made them rotate between the veins on the inside of my elbow veins and those on the back of my hands or forearms, so no vein got used more often than once every four weeks.  Once you’re on maintenance and can go two months or longer between phlebotomies, it doesn’t matter quite as much, because a punctured vein should be fully healed in eight weeks . . . but I still think it’s a good idea to rotate as much as possible. 

I bleed easily, so they could use a thinner needle (22 gauge) on me, along with putting me in charge of keeping a blood pressure cuff pumped up to whatever they told me, usually around 50 mm of mercury, to help keep the blood flowing through the smaller needle.  Thinner needles are easier for the phlebotomist and make a smaller hole in the vein, so less scarring.  I know smaller needles won’t work for everyone, but if you bleed easily, it might work for you.  If your blood doesn’t flow that easily and you can take aspirin without problems, Sheryl’s suggestion about taking aspirin to help with blood flow through the needle definitely worth a try.  You could also ask about taking fish oil:  like aspirin, fish oil also stops blood platelets from clumping together so easily, and aspirin and fish oil can be taken together.  

Other hints about phlebotomy: 

The warmer you are, the more your veins will fill up, and the easier they will be for the phlebotomist to get and the less poking around will be needed - so dress as warmly as you can manage.  If I wasn’t nice and warm pre-phlebotomy, I would walk briskly up and down some nearby stairs until I was warm.  I also wore a down vest so that I kept toasty even when I had to take my coat off.  (And then I used my coat as lap blanket.)  If they are willing to do it, having a nice warm compress wrapped around the arm to be used for five minutes or so ahead of time also makes the veins fill up better and it feels lovely.  When they swab the skin over the intended puncture site, if they swab upwards – from the hand end up towards the heart – that pushes blood up the vein and may also help a bit in making the vein easier to get.

The lower your arm is, the more your veins will fill up, so make sure the phlebotomist positions your arm low enough so that the target vein is well below heart level.  If the target vein is held close to heart level, the vein won't be anywhere near as full.  Some of my phlebotomists had a lower stool they would sit on, because it was easier than sitting in a chair for them to align the needle along the vein of an arm that was held below heart level.  The really expert phlebotomists could get the right angle whether they were positioned to sight along the needle or not; they just knew by touch the right angle to use.

I found that making sure that I drank a LOT of water the day before and the day of a phlebotomy was helpful, just to make sure I wasn’t dehydrated so my veins couldn’t use that as an excuse for not filling up properly.  Taking along a bottle of rehydration solution and drinking it during the phlebotomy also helped – I used a home-made mix of one cup of fruit juice, one cup of water, and 1/8 tsp of salt.  That’s about the same electrolyte mix as commercial sports drinks but I think tastes much better!  I didn’t chill the drink – I just drank it at room temperature because I didn’t want it to cool me down.

Sheryl’s also bang on about keeping gentle but firm pressure over the phlebotomy site afterwards.  I would ask that after the phlebotomist did the last check of the site that she (or he) put on a new cotton puff or folded up gauaze over the puncture and tape it in place with several pieces of tape to provide steady ongoing pressure.  Like Sheryl, I’d leave that on for 24 hours and sometimes longer.

And about what your ferritin is doing – Sheryl’s right that there are two reasons for ferritin to be up:  the first reason is too much iron, and the second reason is inflammation of some sort.  Inflammation can put ferritin up – sometimes way up – even when iron levels are normal or even low.  At the beginning, did your doctor do other iron tests (besides ferritin) to show that your iron really was too high, and do a test for inflammation such as the C-reactive protein to make sure that you didn’t have any inflammation that could be putting your ferritin up? 

On the subject of inflammation, did they ever find out what caused your jaundice after your surgery?  (I’m assuming you tested negative for common liver infections such as hepatitis A, B and C?)  If your ferritin was coming down nicely and then bounced back up only after your liver biopsy, then maybe it was just the ferritin going up because of an inflammatory response to the biopsy itself – in that case, your ferritin should start coming down again with your next test.  When you said the liver biopsy showed “just mild” – was it mild iron levels in the liver, or mild inflammation of the liver, or mild something else?

I hope some of this will be helpful in talking with your doctor -