Hi

I dont think that your scales are different to what is used in the UK or US.
The problem seems to be a lack of knowledge amongst the doctors.
When I was diagnosed my liver spescialist said its only just over 700 we will leave doing any treatment until it gets to over 1000.
MY wife thank goodness insisted that I saw a Heamatologist, she was horrified by what the liver specialist had said and she said that she wanted to start weekly phlebs to get my level under 50, its now 37 and I do feel a lot better, brain fog is better and I dont seem to suffer with so may colds.
However I have the Typical HH pains in my hips, fingers and feet so some damage has been done.

Dougl also speaks about his level in the same way that we in teh UK do and I think that he is in teh USA,
If you read the posts on this site you will see that we all seem to be talking about the same scales.
I would ask your doctor to be referred to a heamatologist if you are not already seeing one as once you sustain the damage a lot of it is permanent and cancers etc like a high iron level so you realy do need to get your level down

Take care

Steve

Here is a link to the labs levels M/F and age. Apparently we are using a different scale.


http://www.gamma-dynacare.ca/Content/HealthcareProviders/TestView.aspx?expandable=1&s=ferritin&single=true&ltlrn=E%7c329%7c3183%7cMAN%7cFERRITIN

Hi Mike;
I lived in Oshawa until I was 35 but now live in BC (last 28 years), so I know the Canadian scales.

Check this article
Diagnosis and Management of Hemochromatosis: 2011 Practice Guidelines by the American Association for the Study of Liver Disease which has been endorsed by the Canadian Liver Foundation.

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

My ferritin got to 1350 and I had to have 8 months of weekly phlebotomies (pint of blood drawn) to dilute it down to the recommended level of 50ug/l, where I keep it now. A ferritin level of 530 is way too high. Now I've got heart (afib), arthritis and liver issues, so if I were you I'd get a doctor who knows the issues and gets your ferritin down at least to the 100 range. My hemotologist recommends 50 for me to try to draw any remaining excess iron out of my liver and heart tissues. Only if your ferritin gets as low as 15 will you start to have issues.

I checked the tables again and they seem to have different letters after the number. Here is the link for normal values in Canada Just scroll down to ferritin pmol/L Canada vs ng/ml USA. I guess it is like comparing grams to ounces

http://www.ccpe-cfpc.com/en/pdf_files/drug_lists/normal_values.pdf

Perhaps I'm a little sensitive about this but my mother died of colon cancer. I am HH. Normal ferritn ranges should not be used for some who is HH. It should be kept below 50 (US labs). You do not want your liver or any other organ (such as the heart to be compromised.

My ferritin was only 369 (US labs) in 1997 and my primary thought I should be seen by a hematologist. Once the hematologist accepted the fact that even women can have HH (another story), I started on weekly phlebs until I dropped under 100.

Iron is toxic and as Steve noted you must get that ferritin down below 50.

Hi Mike;
In BC where I now live, the units are ug/L for ferritin. The hemoglobin is in g/L and Hematocrit is L/L.

Here is a copy of my last results, you'l notice their ferritin thresholds are unreasonably high but do say a low of 14 is a problem:

Hematology
Measured Reference Range
WBC 7.3 4.0 - 11.0 10*9/L
RBC 4.52 4.30 - 5.90 10*12/L
Hemoglobin 149 135 - 180 g/L
Hematocrit 0.43 0.41 - 0.52 L/L
MCV 94 80 - 100 fL
MCH 33.0 27.0 - 34.0 pg
MCHC 351 323 - 365 g/L
Platelet Count 270 150 - 400 10*9/L
Differential
Neutrophils 4.6 2.0 - 8.0 10*9/L
Lymphocytes 1.9 1.0 - 4.0 10*9/L
Monocytes 0.5 < 0.9 10*9/L
Eosinophils 0.1 < 0.8 10*9/L
Basophils 0.1 < 0.3 10*9/L
Granulocytes Immature 0.1 < 0.2 10*9/L

Biochemical Investigation of Anemias and Iron Overload
Ferritin 48 > 14 ug/L

Interpretation:
100 ug/L-iron deficiency unlikely. If result
is persistently >600 ug/L, consider
test for iron overload (transferrin
saturation).
FINAL RESULTS

Just seen doctor after 3 phlebs (once monthly last 3 months) and ferritin level is now 617. My US showed mild enlargement that doctor says will correct once ferritin level gets to 500. So pretty good results and phlebs have had no negative affect on me. All my other levels are normal. I also asked about why my level high point should be 543 and everything I have read says no more than 300. Here is the e mail response I received

My original e mail

"I have been recently dx with heredity hemochromatosis and I use your clinic for testing of my ferritin levels. I am a 54 year old male and I have done extensive reading on my condition. The normal acceptable level is up to 300 microgram/litre. Your lab indicates that my normal ferritin level for my age is up to 543 microgram/litre. Is this correct? and if so why is the Dynacare normal range so much higher than other respected labs ranges?

Thanking you in advance"

Their reply

"Our ferritin reference ranges were set to reflect the central 95 percentile of our patient population distribution, these ranges have been regularly reviewed and verified, they also match with many other large medical labs' ranges. Different labs might test ferritin using different method, and each lab also has different policy and procedure of reference range setting and reviewing, test results have to be interpreted using the testing lab's reference ranges.
Thanks!

Hui Li, PhD, FCACB, DABCC, FACB
Clinical Chemist"

Ferritin level now in the low 400's Starting 3 phlebs every 3 months then retest. Doctor is happy with progress. I have had 7 phlebs in last 10 months.

I'm here in Kansas in the U.S. My ferritin was 379 when diagnosed. Not that high but all of the various symptoms had me convinced something wasn't right in my body. Fortunately I got sent to an amazing hematologist who is proactive in my treatment compared to what I've heard from some. I started w phlebotomies every 6 weeks for the first 2 or 3, levels weren't going down so he moved them to every 4 weeks. I get my levels checked in November to see where they are. My hematologist is pretty adamant about getting to 50 and the importance of me maintaining it once accomplished. I would be cautious of anything higher than that. I hope this has gotten resolved by now or that you have looked into a new physician.

Best wishes,
Laughalittle

Thanx laughalittle. If you check my post a couple back in this thread,I too was concerned but in Canada the lab uses a different system and it is age sensitive. I believe that based on my age at 55 anything up to 543 or so is acceptable. I will continue with the phlebs every three months and hopefully get it even lower. You will see in my letter to the lab and their reply.