i have the exact same issue. i eat a low iron diet and six mothhs ago my ferritin was about 10, and i had only 1 phleb in november, at the end of december my ferritin was 8. so i have to see the doctor next week, im assuming my maint. schedule will be about every 8-9 months.

I have one question...do you take any proton pump inhibitors like Nexium, Prilosec, Prevacid? (They are used to treat acid reflux.) I was dx'd with HH 6 years ago (C282Y x2) and had been on a regular sched of phlebs of one a month. Then I developed GERD (acid reflux condition) and started taking Prevacid. My ferritin went DOWN and has stayed down for 2 years. It has taken me two years to go from ferritin of 35 to 52. I just read a medical paper about a study done on proton pump inhibitors and it seems that they DO work to keep ferritin down. Here is the link for the paper:

Proton pump inhibitors suppress absorption of dietary nonhaem iron in hereditary haemochromatosis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1954964/

I hope this helps. However, a more direct answer to your question is "yes". This happens to many people and there are a lot of reasons why it may happen. It doesn't usually last too long ... unless you are taking a proton pump inhibitor, like me.

Got my high iron reading of 171 and ferritin of 46.7 last week, was told hemochromatosis is suspected and the referring nurse will call soon to set me up with a hematologist...just joined this group and am reading everything I can. If phlebotomy tx. is started for me, what kind of levels are the ideal "normal"? (I am a premenopausal woman.) I find too many contradictory numbers online. I'm just very anxious for this information and impatient for the appointment, as I'm feeling poorly every day.

Hey Casey,
Everyone feels different, when I was diagnosed my feratin was 987! So if you do have Hemochromtosis, you found it quick. So you might need one or two phlabotomies. They should be doing a DNA test now. This will show defects in the HFE gene. H.H. just makes you feel like crap! Its hard to explain to Doctors, and depending on where you live get used to doing your own research and becoming your own doctor! I'm in Georgia and my Doctor don't know anything. Its the most underdiagonsed disorder in the U.S and the most common. Good news others with H.H will be your best information. So good luck and let me know the results!

Thank you Stephanie. I realize you're right about others with the condition being the best support. I am spending all my spare time on this reading the conversations! Did you have the depression, lack of sex drive, brain fog too?...or was it just the joint pain that led you to the dr.? My emotions had been very unstable for a long time, and all I wanted to do was withdraw and be alone. I wasn't paying attention to the joint pain...assuming it was my shoes breaking down, or that extra shift I had worked...etc. Now looking back everything makes sense. As for the DNA test, do you know how close of relatives I'll need to notify, or will it depend on the gene they find?

I didn't have to have a DNA test, my Dr. filled a requisition out for a specific blood test, he wrote Hemochromotosis on it and put Urgent because my ferritin levels were so high, and I had the results within 3 weeks.
For the rest of my family, their tests are taking much longer to come back, can take up to 4 months. On my son's requisition, the Dr. wrote, "family member diagnosed."

Sandrac, now that your levels are way down do you feel energetic?
My level is 2378.

I just had my third phleb yesterday and they are testing that blood. This will be the first ferritin test since Oct and I am anxious to see if the numbers are lower. I have had red meat only once since Oct so I hope that helps. Yesterday I was craving red meat but not so much now.

Chey, that is really interesting about proton pump inhibitors. Thanks for the link.

Casey, I too was so anxious to get started with treatment. It has helped me although I am still tired. But, it is different - maybe in part because I finally feel as if I am taking some action! Each one of us is different as far as at what level you will feel the best. I am still new at this but I really think it is a trial and error type of situation to find what levels work for you. Also, you may want to have your thyroid checked. HH and hypothyroid go together and the symptoms are very similar. I have told others that for me, eating coconut oil has really helped with my joint pain. I usually just use it in the morning now to cook my eggs. When I have stopped using it the arthritis and joint pain comes back.

The genetic test that I had was a simple blood test that came back in a day or two. It shows that I am a carrier - even so I have a confirmed diagnosis.

I haven't had brain fog like most everyone else here. But, I have been really exhausted, my hair has thinned, my nails thinned, my face has aged suddenly, and I have gained weight.

This is a condition that some people don't really understand. I am so lucky to have a husband who is amazingly supportive and gets it and I have some friends who also do. But, there are others who I expected would be just like them and are not. I guess what I am saying is to be prepared for possible disappointment in that way and remember that all of us here are in this together!

Kim

Kimberly, my thyroid was ok. Pretty sure it's HH, just waiting for red tape problems as far as the referral to the hematologist. I have no insurance, so I guess they have to get preauthorization or something. I don't think I have "arthritis" because the joint pain is so new. I feel like I have caught this early. I really would just like to know if taking ibuprofen is ok. Do you know? I know it would help but I'm paranoid until the doc. gets back to me and says it's ok. I have an understanding boyfriend and daughter and parents. I'm lucky for that. Emotions seem to be under better control after the diagnosis, because like you said, at least now I'm taking action...and finally have a "word" to research and learn more about, instead of feeling bewildered as to "why?" on top of everything else. Thank you for your help.

Casey,
That's great about your thyroid - one less thing to have to deal with. I take ibuprofen BUT I am not a dr so it may be best for you to check with your dr to be sure that it's OK for you. Sometimes just a call into the nurse can get an answer for you without having to actually make an appointment - it's worth a try.
Red tape is a frustrating process. I hope it goes quickly for you and you can get started. Let me know how things are going.
Kim

Cheycobb - Yes I take Nexium and have for several years, that certainly would explain why my Ferritin has stayed so low.
KimberlyKB - I still stay exhausted all the time, and Brain Fog is prob worst. I have had my Thyroid checked and it was OK.
Good luck to you!
Sandra

Wow Cheycob...that's really interesting. Perhaps we should all be taking prophylactic PPIs! Although there are other important dietary losses with these drugs as well, I believe.

I also have always had low ferritin levels despite being diagnosed with HH (homozygous C282Y). My ferritin levels have even been in the below normal range at 8-9. I avoid red meat, and eat a diet high in fish, legumes, and vegetables. I also do approximately 4-5 hours of exercise a week, and take psyllium husk after evening meals. I've often wondered if this affects the absorption of iron, however, have been unable to find any literature to support this theory.

My younger sister, however, who is also C282Y has had high ferritin levels requiring monthly phlebotomies.

Unfortunately we both love our red wine, and so have to be very disciplined and only drink good stuff in moderation. I guess the test will be when menopause hits. Maybe by then there may more effective treatments.