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I have had hemochromotosis since 1998 controlled, my dr. does not let my ferritin go over 30 My concern is my ferritin on 3/07/2017 was 26 as of 04/21/2017 it is 88. Why would it jump so much. i'm getting a phelebotomy tomorrow afternoon.
1 like, 15 replies
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Mrs._Z M1954
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Very Interesting -- I am also in the controlled or maintenance phase. My Dr. wants me to be under 100, so not sure why you need to be at 30 or below. I believe it's normal even when in the maintenance phase that the numbers increase. I reached my goal in Feb. of 2015 and since then the numbers have increased and have had two phlebotomies since then. I am on a six month check of my levels and if it's 100 there is no additional need for a phlebotomy. My lowest number was 38 and it tends to increase over the six months in between. I don't know if there is any reason as to why it would jump but I do know that many times prior to the maintenance phase after having a phlebotomy, the numbers would increase rather than decrease. It will be intersting to see where your numbers are at after the phelebotmoy. Good luck
M1954 Mrs._Z
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Mrs._Z M1954
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GillianA M1954
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My rheumatologist has a similar approach to your doctor, in that he wants me to keep my ferritin under 50 ug/L. He says that in his experience, people with hemochromatosis feel better when they keep their ferritin below 50 ug/L.
About why ferritin can jump around - iron is only one of the things that can affect ferritin levels. Ferritin goes up with increasing iron stores, but it also goes up with infection, inflammation, and tissue damage. (For this reason, ferritin is called a "positive acute phase reactant.) Ferritin varies by time of day and whether you're fasting or not, which is why my doctor asked me to get my ferritin checked while fasting at about the same time in the morning. The liver also makes more ferritin than usual if someone drinks alcohol, and apparently drinking beer results in a greater increase in ferritin than drinking wine or spirits!
M1954 GillianA
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sheryl37154 M1954
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Ditto GillianA response. Ferritin is meant to be kept <50 but Mrs. Z may have a reason that her dr wants it near 100.
Infection (even a simple cold) can cause ferritin to rise. You also need to look at all your Iron Studies results. What is your serum iron, TIBC and TS%? How long is it since your previous phlebotomy?
Foods don't really have an effect on your ferritin unless you are eating red meat every day (or 3 times a day as some do), and salmon and green beans definitely do not have high iron.
I feel better with a ferritin level of 34 or less and it is now often in the twenties with continuing 3 monthly phlebotomies and I feel ok with it. But, my serum iron and TS% is always high. Only when I was having 2 monthly phlebotomies did my serum iron and TS% become normal. I don't want to go back to that.
M1954 sheryl37154
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sheryl37154 M1954
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Don't worry it will go down again, and up again, no doubt. It is a wonder it was not higher before and while you were healing after hip surgery.
I had to have both hips replaced from avascular necrosis. The iron in my blood was so thick it could not get into the finer capillaries that feed the bone so my hip bones died. I had been 9 years undiagnosed with HH - my dr was in denial and I had not heard of HH to push it. This was pre google!!!
After being deironed, I found that I would have chest pain and arrythmia when my ferritin jumped back up to 80. Have you noticed anything like that?
Mrs._Z sheryl37154
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Now I'm getting scared----I too was undiagnosed for several years and finally when it was discovered I started at 940. I've been deironed since February of 2016 and now in maintenance. I'm concerned since my Dr. thinks I'm good with under 100 -- Others are saying between 30-50 is best. I believe when I looked on the Haemochromotosis website they recommended to be at 50. I don't have a follow up with the Dr. until July but wonder if I shouldn't ask now about getting in the 50 range.
sheryl37154 Mrs._Z
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Were you ever brought down to <50 in the deironing process to make sure to get it all out of your organs? After that, your dr may be assuming that you would feel much better being in the 100 range. How was your Hb going? Were you having a problem with that at a lower range?
If you are comfortable now with no symptoms then don't worry about it. If there is something niggling at you, say that you want to see how it feels at a lower level. It also depends of what your serum iron, TIBC and TS% are doing at that level. Are they all within normal range? If not, that is another reason to try going <100.
Mrs._Z sheryl37154
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Thanks for your response, Sheryl. I was brought down to 38 at which time I started the maintenance phase. My saturation was at 68% when originally diagnose and nothing been checked since then. I asked about it at my last visit in March and she indicated that it wasn't necessary to check again since all my other numbers were good. My hemoglobin has been on the lower end and only one time during the deironing process did I become anemic. I'm assuming that's what you meant by HB.
M1954 sheryl37154
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Thanks for your reply Sheryl it makes me feel much better mine has flucuated before as high as the 60's but never the 80's. I had a phlebotomy yesterday and it went well. As to your question i havent felt those symptoms.
Mrs._Z M1954
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M1954 Mrs._Z
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Mrs._Z M1954
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Thanks again -- my Dr. is also a big advocate of low iron diet and feels that's key. I will check on my hemoglobin and hematocrit. I have the abilit to send a message to my Dr. without seeing her, so I may try that. Thanks again.