Went down with a bad cold last week and the hospital said not to come in as they have people having transfusions and other treatments so I missed my 7th phleb.. Went back to the hospital yesterday and got the results from my 6th phleb, an amazing result after only dropping 1.3 points after the 5th phleb it has now dropped 114.9 after the 6th phleb, so I am now down to 235.9. However the hospital informed me that they have now changed their protocol and will still do the weekly phlebs but will only do a blood test every month..... how crazy is that, apparently its a cost cutting exercise!!!! I am going to see if I can pay them to do them or I might go to far under....

Hi Steve;
I had my ferritin checked every time, but they did it while the pleb was happening so the result I got the next day, when the testing was done, was my ferritin before the pleb effect. You don't want to get into anemia (ferritin under 10). Did you check this article?

http://onlinelibrary.wiley.com/doi/10.1002/hep.24330/pdf

I'm now at a ferritin of 45. I get a pleb if it goes above 50, for maintenance. If below, I wait 2 weeks then test again.
Hope this helps.

I had my ferritin taken once a month during the initial phlebbing but had the CBC done before phlebbing. It was a finger prick. Yuck! That hurts more than the needle!

Hi all I convinced my brother to get tested, he got the results today, he is a regular blood donor, but his tests came back with Feretin at 388 so they are now going to do a genetic test on him, but it looks like he will also have this disease.

Had my 8th phleb today, and asked the nurse if I could pay for them to test my blood as I am concerned that their new cost cutting protocol of only testing once a month will let me go to low. The nurse went away to speak to someone came back and said that I should not have to pay, and that they will test my blood next time, so it pays to question the medical staff, its your body and you its going to affect if it goes wrong.

Had my 9th Phleb last Wednesday, felt really unwell on Thursday, sick and very tired, so bad that I worked from home as I could not face driving 27 miles to work.
Friday still felt very tired and sick, Saturday I felt less sick still very tired and walking any distance was a real effort, this cant be right.
At my last Phleb session I expressed my concerns about having had 3 phlebs without any checks as I am not to far from the required level of 50, I was 235 when last tested, and the last drop was by 130 points, so my concern was that I may go too far, I told the hospital that I was unhappy about having any more treatment unless I was checked and even offered to pay the 4 the tests cost, this was refused but The hospital have said that they will check my bloods this time and I will get the readout before the next phleb session next Wednesday.
Does the way that I am feeling indicate that I may have been taken too low?
Its Sunday and I feel very breathless and very tired, the fatigue is getting me down, as I went out with my wife daughter and 3 year old grandson and I struggled to keep up with them walking, it always used to be other people asking me to slow down.
I am going to raise this with the hospital next week and will post the hospitals comments here, having moaned about the hospital I cannot fault the Luton and Dunstable nursing staff that I have seen they are all fantastic and understanding and make the visits more bearable by being so friendly and caring, its the hospital policy that stinks, cutting back on a 4 test could mean that I go too low, is this why I currently feel so bad?

Hi all
I had my 10th Phleb on Wednesday, and they struggled to get the full amount from me...
We insisted on seing the results from my tests taken last week as it will have been 3 Phlebs with out any tests.
My Ferritin is now dow to 110 so that is good,I was worried that it may have gone down too far with my blood not being tested due to teh cost cutting at my hospital
Felt very tired Wednesday evening and dozed off watching TV, I never used to do that.
Thursday I felt very rough and did not go into work, but worked from home.
Slept like a log Thursday night and had to be woken by my wife on Friday morning, and did not feel like I had been asleep.
Its now 10:15 here in teh UK and I dont feel too bad apart from the fatigue, and a bit brain foggy today, I hope this will ease.
I see my specialist in two weeks so with two more Phlebs I may be at a point to go onto maintenance.
I must say that the nursing staff at the Luton & Dunstable are fantastic, and make it much less of an issue giving the blood.
Will update this after the next Phleb.
Steve

Steve,

What was your Transferrin Satuation %? I have found that when that is higher than 40% for me, I get brain fog. My doctor's cutoff is 50% for many of his patients but it's 40% for me.

JMHO

Hi bronxpreston
Thanks for the reply, I will try and find out what my TS level is, it's interesting that you mention about differing levels for different people I too suffer from the recurring brain fog, I used to think that I was going mad before I was diagnosed and then found this site.

Steve

Hi All
This weeks update 04/04/2014
I had my 11 Phleb on Wednesday, this time they took blood for analysis after we raised the concern that on March 12th my Ferratin was at 110, and that this was a measure from blood taken on the 05th March and I have now given on the 12th, 19, 26th and now on the 2nd April, I am worried that my level may now be below 50 or even further and they will not know.
The last 3 Phlebs have made me feel quite rough the next day, very tired and feeling very sick, although the sickness was not quite so bad this week, I have not actually been sick but have felt very bad.
So, I shoud get a reading next Wednesday and then know what my levels are. I have an appointment with my blood specialist the following week and am hoping that I may be low enough to be put on a maintenance regime.
I am currently very tired, but that may be as a cause of the phlebs as well as the HH, however I do feel happier in myself confirmed by my wife, my aches and pains are not as bad with my left hip pain now being a minor issue, colours seem brighter and I am sure that my vision is a bit better, I no longer have the cough that I had, and the cramps are getting less.
My feet also don't seem to be suffering from the same burning issues that I had, and I seem to only be having the hand pains in my right index finger, but that is still like someone stabbing a needle into me.
It is now easier to put my socks on, although I am still not very flexible
my breathing seems easier and my voice seems to be stronger, I had complained the last few years about a lack of power in my voice.
Also, and this is very weird I think that my hair is not quite so grey.... my wife has also noticed this.

I will update this next week with how I get on and how I feel as it may be useful to others on what to expect.

Regards

Steve

All
I was originally told that they expected that it would take up to a year to reduce my level from 700 to 50, I have had 12 weekly Phlebs now. I saw my haematologist today 11/04/14 and she said that I am now down to 41 and that they are assessing my case but think that they will now put me onto maintenance I will find out next week.

The Phlebs increased my fatigue and general tiredness, but so many other small things have improved.

Take care
Steve

Hello, have you been checking your hb levels. They are probably on the low as it takes around 4-6 weeks for your body your body to fully replace the loss blood and after a few donations you might not have had enough time to catch up.

If you have started to notice cramping after donations, it sounds like your low in something. This could be temp and it will go back to normal soon or you could be now deficient.

Do a CBC and see if your low in any minerals. Might find magnesium or potassium is low.

Hi Tfranke
I will try and find out if my magnesium or potassium is low.
The cramps don't seem to be so bad now, but they were not after I had donated they just seemed to be random, if I tried to put my socks on etc.
I have noticed that my pains in my feet and fingers seem to be becoming less severe now, hope that carries on.

My wife who is also my hairdresser has commented that my hair seems to have gone darker.... this is since I started having the Phlebs, have we found a cure for grey hair!!!

Take care

Steve

Hi All

The continuing saga, I have been told that once my ferritin is below 50 and I am on a maintenance routine I will be eligible to be a blood donor again. I am still having some joint pains, but my hip pain has gone again and my walking is getting better, I can now walk further without discomfort and the feeling of walking through treacle has just about gone.
I still have the odd funny feeling on my arms and right hand that feels tender as if I have been burnt but goes by the next day.

All in all I feel so much better and more full of life than I have done for many years, and I seem to be happier in myself.

Regards

Steve

Man Stwm, I appreciate this journal of your treatment. You came down to normal in 5 months. I can only hope for such a speedy recovery. I have developed hip pain in the last two months and it is now fairly persistent. But I still walk 2 miles a day. My ankle arthrities is almost ten years now (but not worsening with meloxicam. I couldn't even comfortably walk when it started). Stephanie (above) commented that her x-rays were normal, despite hip pain. Did you have similar experience? I am concerned about my fingers alot, since I am a musician. It would be a delightful miricle if I could have improvement in my fingers. I see my first doc tomorrow. Wish me luck! Thanks again.

I'm adding a note here about the joint pain. I have osteoarthritis in both ankles (MRI shows it) as well as my hands. When I'm in a lot of pain, there is no visible swelling, but I can hardly take any steps without a lot of pain. I was at a ferritin level of 1350 back in July and it took 8 months of weekly plebs to get down to 50.

However, I also got my other metals checked and found out I'm very high in lead, which has a strong link to arthritis, so I'm now getting weekly chelation IV treatments. I have to pay $120 for each of those, however I'm starting to notice an improvement after having 5 or 6 of them.

My suggestion is to get your other metals checked if you're finding arthritis an issue.