Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hello everyone. I don't post much but always read. I have been without a phlebotomy for two moths now. I don't follow any diet and just went on a 7 days cruise in the Caribbean. A stuffed my self every day with food. I have been eating red meat a lot these last to months. Especially in the 7 days cruise at least once a day sometime 2 and eating junk food. Last Friday I had some test done after I got off the cruise and after eating so much and these were my results:
Ferritin 50, CVC only the ALT were high (rannge is from 7 to 55) mine is 70. The rest was normal. Iron was 85, the range was 50 to 212. UIBC was 282 range was 155 to 300, TIBC 367 Range 250 to 450 and %saturation 23.16 range 20 to 40. Is this normal? Like I said before I don't have the two genes I was tested for, the C282Y and the other one which I don't remember. I was amazed to see these results because I haven't felt that good for the las two months. Before going on the cruise I missed my doctors appointment and was worried because I thought my ferritin was very high because of the way I felt. To my surprise I saw the results and could not believe it. Since I had the genes tests could it be possible that I don't have hereditary Hemochromatosis and have acquired Hemochromatosis which I have read is reversable? I asked because I had a High iron diet without knowing it. Before I was diagnosed I was eating Special K which has 50 % of Iron and a lot of oatmeal. I would eat cereal at least 4 times a day and sometimed up to 7 times a day. The oatmeal I would take a cup of water and mix raw oatmeal in it and drink like 5 cups a day plus I was taking vitamins with Iron. I did that for like 6 to 8 months. plus I used to eat red meats almost every day. would like to hear your opinions. Today I am going to my hematologist for my appointment. Thanks for your help. I will keep you posted.
PS: I'm sorry for any orthographic mistakes or if some sentences don't make sense, English is my second language. May God bless everyone.
Ferritin 50, CVC only the ALT were high (rannge is from 7 to 55) mine is 70. The rest was normal. Iron was 85, the range was 50 to 212. UIBC was 282 range was 155 to 300, TIBC 367 Range 250 to 450 and %saturation 23.16 range 20 to 40. Is this normal? Like I said before I don't have the two genes I was tested for, the C282Y and the other one which I don't remember. I was amazed to see these results because I haven't felt that good for the las two months. Before going on the cruise I missed my doctors appointment and was worried because I thought my ferritin was very high because of the way I felt. To my surprise I saw the results and could not believe it. Since I had the genes tests could it be possible that I don't have hereditary Hemochromatosis and have acquired Hemochromatosis which I have read is reversable? I asked because I had a High iron diet without knowing it. Before I was diagnosed I was eating Special K which has 50 % of Iron and a lot of oatmeal. I would eat cereal at least 4 times a day and sometimed up to 7 times a day. The oatmeal I would take a cup of water and mix raw oatmeal in it and drink like 5 cups a day plus I was taking vitamins with Iron. I did that for like 6 to 8 months. plus I used to eat red meats almost every day. would like to hear your opinions. Today I am going to my hematologist for my appointment. Thanks for your help. I will keep you posted.
PS: I'm sorry for any orthographic mistakes or if some sentences don't make sense, English is my second language. May God bless everyone.
Many drs make the mistake of diagnosing HHC or even HH when they see an elevated ferritin over the lab range. But this is a common misconception. Your TSAT is well within the range, and perfect, in fact, at last test. If you do not have either of the genes, you do not have HHC. You may have had iron overload from diet, lifestyle, alchohol, supplements and YES breakfast cereals are a big culprit as they contain actual iron shavings...but excessive amounts of iron supplementation and Vit C heavy dosing can cause a person to absorb more iron from their diet. Once you cut some of those things out and received the phleb(s) the iron came out and brought your numbers back in line. Chances are, you will not load like that again if you take some modifications steps.
Iron loading for the most part is a very slow process that takes place over time. That is why men find out about it in their 5th decade usually and women in their 6th. Even with the genetics. It is only through accident or more awareness that people are being diagnosed sooner and catching it.
I encourage you to get retested in 6 months and see where the numbers are...skip the breakfast cereals in large quantities. Scottish porridge oats have no iron. Large flake oats are also better than quick oats. Eat dairy with your meals, milk, tea, coffee, calcium...helps with reducing absorption. Avoid iron supplements, heavy Vit C dosages, if your liver enzymes are elevated reduce alcohol, sugar...perhaps you have a fatty liver (NAFLD, you can google it) and this will cause inflammation in liver and some damage if left unchecked. Get your liver enzymes down to optimal 25 for AST, ALT, and GGT. Fatty liver also can cause the body to absorb more iron than usual. If there are virus, infection, bacteria or other genetics or underlying conditions that can affect iron loading.
Good news! You do not have HHC! You may have had some iron overload, which happens, but you treated it and now you can keep an eye on your levels over the next few months and see how it goes.
Also get checked for hepatitis viruses. Common to get A or B and not know it and sometimes Hep C, but good to rule it out.
Take care, C
TSH
Tyroid antibodies to check for Hashimotos thyroid issues o Graves disease
Check for Epstein-Barr in my system
Adrenal fatigue saliva test and blood test.
24 hours diurnal saliva test.
I would suggest the DNA testing. Did you have the DNA done or not? I am confused as I thought your first post said you did not have the DNA, the ones they test for. C282Y and H63D and S63D.
What were your numbers at diagnosis?
Thyroid can affect a person with many of the same symptoms. Those tests will help see if your adrenals and as well your thyroid and pituitary are working correctly.
May I suggest a Naturopath physician? They are good at getting to root cause. They may have some other suggestions for adrenals and hormone issues for men. Cortisol and those tests you mentioned about the saliva testing are good ideas. Keep track off your average body temps by taking your temp three times a day when you get up, at lunch and at 3pm. Take an average. If your temps are low, below 98.6 into the 97's or 96's consistently that can point to hypothyroidism.
It is a journey of discovery learning of our health. It seems you have found some drs so far that truly fit the HHC stereotypical dr with little to no knowledge of the disorder and the cause and effects.
Take care, C