I have venesection done every 3 weeks and ferritin levels dropped consistently on average 20 -25 .
But the last test showed an increase !!! from 121 to 142 increase of 21 which surprised me as I watch what I eat,drink black tea,take calcium,etc.
In 3 weeks to increase by 21 was a shock I was expecting to be on maintenance levels in October.Had chronic sinusitis/bronchitis and was on antibiotics between venesections.
Should I be concerned??
Wish I had an answer for you Johan I'm at the start of my treatment 1221 and 82% saturation, I'm sure the antibiotics threw you off course
the thing I struggle with is the brain fog and I forget simole words it's seems the normality
I gave started my venesection and I believe the consultant is pushing me to ince a week
so according to the mats will take a year or so
you are doing great so don't worry you are nearly there well done
This just happened to me, was taking antibiotics for a sinus infection, although I didn't gain points I only lost 3 points from a full bag of blood, I give blood once a week, last week I was 103 this week 100
This is common amongst us iron heads. The deironing stage is up and down. Body trying to replace iron from vampires! It will eventually come down and you will just need to maintenance it! Mine did the same
Being ill will increase it and as others have pointed out also some medications will raise it
The other thing that happens is you are removing some iron but because of how it is stored due to faulty genes you deposit it in organs so you reduce it in blood so it then takes it out of the organs this doesn't happen instant so there is times it will bump up it is nothing to worry about.
It ends to slow down towards the end this various some people when they hit 100 others 150
when you see consultant they should have projection and show you progress report in simple graph form which they hope will be your pattern for future
Thank you -really appreciate input will persevere give feedback after next venesection
Thanks for the pep talk
Thx- cannot wait for next test cannot see it going up again!!
HH is a life time thorn in our side.My reading started on 3900 after many years with lots of wrong advice from doctors along the way I am now nearing the end-just impatient .
This forum has been a tremendous blessing .
Hi Johan, I have been having venesections for 20 years now, after a tortuous 9 year delay in diagnosis.
My husband and son also have it - so lots of experience. Any infection, inflammation, malignancy will cause your ferritin level to suddenly spike. Mine went up more than 600 more than the previous reading just for a cold. It is only temporary, and increases will happen often. We have to give up ourselves to it. Keep in mind, it is better than having chemo.
I am afraid our bodies do not behave textbook like - you will not stick to any projections that might be given to you. All we can do is keep having those venesections on a regular basis.
To answer you - no, you definitely do not need to be concerned. An increase of 21 is minimal for the infection you had, and it would not matter if it was a whole lot more. And there will be times your ferritin will increase for no obvious reason at all.
Just work at getting it down to <50 and current research from a French team in Rennes, France indicates it is best to keep it <50, and continue on this path to get your TS% down to less than 50% as well. This can be done on a 3 monthly maintenance as your levels reach 'normal' levels. But <50 is your aim. Quite often if your TS% continues to be high, you will continue to have the symptoms.
Good luck with it.
Sheryl always enjoy reading your contributions.Found them to be very informative and reassuring. Thank you.
Thanks, Johan, that is very kind of you.
Hi...I was diagnosed in April with a level of 3025. I had 4 phlebs and it went down to 2600. Had 4 more went UP to 3175! I was p****d and upset. I had 4 more down to 2800. Had 4 more and am down to 1901. I just came from a second opinion at UofM. They said i'm doing everything right and to just keep doing it. They want me at 40 so it will take time. I get one every week. It's getting old and pretty weird that I know ALL the staff at the hospital I get it done at. i wish i had your numbers, i'd be almost done with the every week vampire visits!.
Thx for your comment.The personal experiences of fellow HH travellers are invaluable.The condition is so frustrating and affects us on so many levels.
How long did you take to drop?
Because I have 3500 now