Do not be afraid, HH is treatable by having a few phlebotomies and then giving blood 3 or 4 times a year. At your level, there will likely not be any organ damage.

I had a relatively low ferritin level of 360. I had a multitude of tests and scans on my organs. All came back as normal. I was told that diagnosing HH at such low ferritin levels is very good news. In fact there was discussion about not treating my HH until I reached 1000 ferritin. We went ahead with treatment, and after 4 weekly phlebotomies my minor symptoms have already begun to subside.

Thank you for the replies.

They can not diagnose me just off my ferritin level, correct? I believe I have to have the genetic testing done?

Also, is the HH world, how does a ferritin level of 330 compare?

How old are you? Are you male or female?You should get the genetic test since high SF can occur in other diseases:

Causes of high serum ferritin
without iron overload
Liver disease non-alcoholic
hepatitic steatosis (NASH)* or viral
hepatitis (B/C?G)
Alcohol excess*
Chronic inflammatory conditions
Rheumatoid arthritis, inflammatory
bowel disease
Bacterial infections
Malignancy especially haematological
Thyrotoxicosis
Familial hyperferritinemia and
cataract syndrome

I was diagnosed in 1997/98 with a SF 369. I was 52 at the time and am female.

Liver test levels were not impacted.

As mentioned already HH is treatable.

330 is probaly borderline to begin treatment. Be glad treatment began early enough to prevent any damage. Do you have arthritis? I do in my ankles and knees but considered mild.

hemwhat, are you kidding? (I'm sure you're not) Not treating until SF is 1000? What, until your liver is damaged? Unreal. For your sake I'm glad treatment was started on you.

I am 46 yo female. I had JRA as a kid but have not been on any meds for over 30 years. I do have osteo in my leg ankle. I also have struggled with multiple UTI's for the last couple years. Most recently 4 infections in Aug and Sept

Whyohwhyome: If you are confirmed to have hemochromatosis, I'm sorry about that, but I am glad you got the diagnoses so early and with such a low ferritin reading. At a ferritin reading of just over 300, for an estimate you only have about 5 or 6 blood donations (phlebs) to go, to get your ferritin down to what I call normal between 50 and 75, and then you become a regular blood donor for life, say about 3 or 4 times yearly. Note - no two cases of hemochromatosis are just alike. Search "ibs hemochromatosis fibromyalgia cfids" and see what you come up with.

A ferratin level of 330 is relatively low, it needs to be dealt with however before it climbs over 1000. That seems to be the level where organ damage can occur.
As a reference, my ferrratin at diagnosis was 6855.

Ok I know that most doctors believe you can't get any damage unless your ferritin comes back over 1000, well that is not always the case...my ferritin was only 799, but my transferrin sat was 100 % and my liver biopsy came back at 4+ and cirrhosis of the liver, along with cardiomegaly, complete thyroid failure, pancreatitis, septic gallbladder, immune disease, problems with female organs,and arthritis...It took almost 3 years to deiron....

I still deal with immune problems and problems with my heart and arthritis even though I have been on maintenance for several years.

So don't put off phlebotomies..

Thank you all for your replies. I can not get into a doctor until January, so you have been my knowledge.

I also just found out that in addition to my ferritin being 330, my iron binding capacity is at 144, which my doctor says is low.

Any thoughts on that?

miss Sophia, how is the liver doing now that your levels are normal?

It's been a little over a year since I had my first phleb, my iron was 1023 by April I was on maintenance after doing weekly phlebs. Liver biopsy came back with me having NASH, but since my blood work has shown my liver enzymes have returned to normal levels. The bad part is that I've been overbled and my FE is was 6 as of Oct.

Diet and other factors will determine how long you can go between phlebs. I am finding this to be the hardest part as my Dr. had me doing phlebs every 2 months, but now we are holding back due to my very low levels.

Overall you should be in great shape as you found out early and you can most likely lead a normal life and just have your phlebs done a few times a year.