Posted , 7 users are following.
II just got my to the doctors and she said my blood was 350 she said I don't need to get my blood taken out because my blood count was okay I've been to two other doctorsand they wanted me to get my blood until it reached 50 does your blood count really have something to do with
0 likes, 9 replies
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youngatheart1 kathy49626
Posted
Yes and no, you need to have high saturation level as well. My level was only 304 but having bi weekly venesections as my saturation level was 68%. It took 3 years and a change of surgery with a young gp to get tested. The docs at my old surgery didn't understand HH and just said levels high and left it. Have you had the gene test?
GillianA youngatheart1
Posted
Actually, while the most common type of hemochromatosis (related to the HFE gene) causes the saturation level to rise, the second most common cause of hemochromatosis (related to the SLC40A1 gene) causes ferritin to go up but does not cause saturation to go up - at least, not until very late in life. Other, more rare, types of hemochromatosis can also cause high ferritin without high saturation.
Therefore, someone who has high ferritin without having high saturation can indeed have hemochromatosis, just not HFE-related hemochromatosis.
This flowchart (Figure 3 - Panel B) from a 2012 article by Fleming and Ponka, "Iron Overload in Human Disease," in the New England Journal of Medicine shows what conditions to consider in someone with high ferritin. (Since 2012, testing for liver iron by MRI imaging and for liver scarring by liver elastography are often done instead of doing a liver biopsy.)
tom_70042 kathy49626
Posted
hello KATHY
if you are looking at blood count assume you mean ferretin level
350 is not that high but if you have been diagnosed with HH like me they will and should try to get you down to 50
Each venesection normally loses 50 but it does vary but if you are normal only a few vs will get you to the right level then you will be on maintenance
my thoughts would be that your haematologist will put you on once a fortnight but do what they say I Started at 1200 last july and am now down to 50 and i go every month for a blood test and treatment if required
but i was in vs weekly from August to December which was very aggressive dud the trick but the fatigue was hard
now i am fine but its a life condition just needs to be managed
there are some lovely people on here who will give you great advice
stay healthy
best
TOM
i
youngatheart1 tom_70042
Posted
Hi Tom, saw haemotologist on Wednesday who said new guidelines now say getting down to 100 is enough, mine currently at 84 but he said to keep going as his colleague wrote my original report, wondered if you had heard this new number
tom_70042 youngatheart1
Posted
no had not thanks will check when i go for next tests in two weeks last time tested was at 30 and i felt awful but that was two weeks ago feel great now
will check and get back to you if this is indeed right fabulous news
cheers
ellen23311 youngatheart1
Posted
the differing in number is just your clinics goal, guidelines say 50 but its just a guideline, under 100 is a pretty safe place to be as you have to consider it took years to get to the level you started ar
sheryl37154 youngatheart1
Posted
From my knowledge, one must have ferritin reduced in the first instance to <50 to get all the iron out of your organs. Then you can go to 100 if that level is comfortable for you. I keep mine in the 20s to reduce my TS% and also because I get arrythmia when my ferritin goes to 80.
bridget_80790 kathy49626
Posted
hi levels need to be kept under 100 my 2 brothers & i are both hemochromatosis and started with levels 1500 and above, we have all been having venisection for past 12 months , 1 bro got levels down to 60 by october but has gone back up to 156 and been told to get venesection to get it back down to 50 so as far as we are aware if it goes above 100 we need to have venesections again , hope this helps and good luck
youngatheart1 bridget_80790
Posted
Thanks, I did wonder but as my old haemotologist has retired have a new one and wasn't overly struck on him, but we will see. Will get to 50 as that is what has been originally requested at 85.4 now so not far to go.