Posted , 5 users are following.
Hello all my friends...I was diagnosed in September with 3500 ferritin ..After 3 phlevotomies my ferritin dropped to 2600 but after the 4th rise again to 2900 ...Is this normal?
0 likes, 11 replies
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Golak Koskyr7
Posted
Hello there,
typically , your ferritin keeps going down with phlebotomies. how far apart are your phlebotomies? that could be playing a role .
also, as I'm sure you know, with a ferritin of above 1000, you have iron deposited in your organs, so depending on how late you were diagnosed, with reduction of your serum ferritin, those organs release the stored iron back into the blood stream.
i would recommend keeping an eye on your trend and lack of reduction in your ferritin, would signify the need to have more frequent phlebotomies.
Koskyr7 Golak
Posted
This time the space between phlebotomies was 16 days beacause of low hematocrit..I hope that it will be because the release iron from liver and pituitary gland(I have stored iron there)..This with the release iron from organs is sure ?
sheryl37154 Koskyr7
Posted
Yes, this happens but especially so if you had some sort of infection, inflammation, (a cold perhaps) at the time of your blood test.
As Golak said, with a ferritin of 3500, your phlebs should be frequent, usually weekly with that level.
Are you homozygous C282Y?
Koskyr7 sheryl37154
Posted
I am homozygous G320V , HEMOJUVELIN and heterozygous Η63D
sheryl37154 Koskyr7
Posted
Oh dear, juvenile haemochromotosis - complicated. We cannot apply our knowledge of classic haemochromatosis to juvenile haemochromatosis.
You will need to dig deeper - read medical studies. Google "Juvenile Hereditary Hemochromatosis" published by NCBI. In that study they say that vx every week or two weeks of 200ml because of the low hematocrit..
How young are you?
Koskyr7 sheryl37154
Posted
I am 24 years old and I have phlebotomies in average every 10 days about 450ml blood
sheryl37154 Koskyr7
Posted
Then you are doing very well with your condition. Don't despair if there are backward steps - we all have them. It will take a long while but stay positive and motivated. It is better than having chemo.
If you have not already, draw up a spreadsheet to keep a record of your blood levels and your phleb dates, a couple of words about how you feel, whether you have an infection etc, and how your phleb went. You might discover a trend. I try to have my blood level tests done a few days before phleb as they are at their highest before phleb.
Good luck with it all.
Koskyr7 sheryl37154
Posted
Thank you very much for your words...I hope next time it will have dropped ...i am anxious because i have stored iron at liver and pituitary gland..
sheryl37154 Koskyr7
Posted
I ended up having a small tumour (benign) on my pituitary gland which gave me huge menopause symptoms. I suffered this for 6 years before someone thought to check my pituitary gland hormones. This was considered to be as a result of damage caused by HH.
steve38601 Koskyr7
Posted
Yes. i started at 1486 high point. Began Phelb treatments at 1380. I dropped about 200 points on avg for each 500cc of blood removed. A few times it went up. After two months it fell from 1386 to 404. I stoipped, took a break. was doing weekly treatments. I had my Ferritin re-checked after about 2 - 2.5 months of no Pheleb infusions and ferritn is 115. So, as far as im concerned, im good for now. I dont have HH or the two genes. So whatever the cause of the elevated ferritin (and why and for how long) i dont know. Its a blood test they dont check, in my case being almost 70, they probably decided i could have HH. i dont. My ESR and CRP-hs are normal. So ill just keep an eye on it. Maybe check each time i get a physical and CBC and lipids test. I dont feel any better tho, which is upsetting. but you do all you can do to rule out, the more you rule out the better.
sheryl37154 steve38601
Posted
Very unusual, unless you had some infection, inflammation, malignancy, liver damage (even fatty liver) at the time of the blood tests. Was a CRP done at the same time, or afterwards?
Try Vit B12 injections, Vit D3 forte drops practitioner's brand. These are vitamins that have a huge impact on our wellbeing, and some of us don't absorb one or the other. Testosterone might make you feel better too if it is low. My husband is 71 and has all 3 after falling into a huge slump many years ago, and it was found that his Vit B12 and testosterone was very low.
I also take CoQ10 (as a treat because a good one is expensive) and Vit E. These are reported to help repair our molecular structure. This came out of research regarding damage done by HH.