My main symptoms are disabling fatigue - I wake up tired and just get more tired as the day goes on. I need an hour or two nap in the middle of the afternoon. I can't think properly and have to check and recheck everything I do, and still make mistakes. This includes regularly messing up really simple stuff such as putting the nuts away in the fridge instead of in the cupboard where they go . . . although I usually do notice as the nuts approach the yoghurt that they are not supposed to be together and take the nuts back out of the fridge. I also have off-and-on pain in the small joints of my hands and feet and in my sacroiliac joints. I am also cold compared to everyone else and have to really restrict my diet to avoid gaining weight. All of these symptoms stopped getting worse once I started phlebotomy, but did not get better and still haven't even though I am now de-ironed. I wonder if these symptoms may reflect cellular damage caused by iron overload that doesn't repair itself, particularly neurons and cells in endocrine tissues, but this is just a guess. So I haven't given up on figuring out the root cause of these symptoms and fixing whatever it is, but just getting rid of the excess iron didn't do the trick.
One thing that may have gotten better: during the time my ferritin was going up, my TSH climbed also, although remaining within the normal range, and my free T3 was low when my free T4 was within the normal range. I have read that when the body isn't converting the (mostly inactive) T4 to the active T3, there is an excess of T4 that can cause rapid heart beat. I haven't had any endocrine testing done since getting rid of my excess iron but my resting heart rate has dropped a bit, so maybe my thyroid parameters are better. Or maybe my heart was affected by extra iron when my ferritin was high and now it isn't.
Also, because of the suspicion of celiac disease (more on that below), my bone mineral density was tested and I was found to have osteopenia. I was really surprised by this because I take physiological doses of vitamin D3 as well as vitamin K (K2-MK7), and supplemental amounts of the (bio-identical) hormones estradiol, progesterone, and testosterone. Osteopenia *may* be related to iron overload in ferroportin disease, because the spine is one of the places that iron can been seen to accumulate on MRI imaging. I started taking potassium citrate and extra magnesium (let me know if you want medical references on this) and I am hoping my bone density will improve now that my iron levels are back to normal. However, bone mineral density testing is allowed only once every three years, so I have another year or so to go before I find out. Your ferritin didn't go as high as mine, but there are many different types of mutations involved in ferroportin loss-of-function disease so maybe some of these mutations are harder on bone than others? Given spine pain, it may very well be worthwhile asking about your bone density - and definitely worthwhile if you have noticed any loss of height or getting a bit stooped-over.
I would suggest keeping some sort of log to track your symptoms over time, because it is really hard to remember how tired you were or how much something hurt weeks, months, or years ago. I track fatigue, using a scale of 0 (asleep) to 5 (normal.) I haven't been "5" since I started tracking . . . with the exception of the morning after a surgery during which I was given a high dose of steroids. (I have no idea why steroids would reduce fatigue in iron overload . . . but it was great feeling normal, except of course for the post-op pain, for the few hours that the effect lasted.)
Symptoms that I have that I believe are completely unrelated to my iron metabolism are multiple food intolerances, including to gluten and/or something else in wheat. Wheat/gluten exposure results not only in cramps, diarrhea, and a major increase in fatigue, but also causes one joint - a different joint each time - to suddenly turn red and hot and swollen and then gradually go back to normal over a week or so. This type of joint flaring is called palindromic arthritis - probably "palindromic" because the joint involved is the same after the flare goes away as it was at the beginning. As long as I manage to avoid wheat and its components entirely, I don't get these joint flares. My blood tests have been negative for celiac disease antibodies and I haven't had intestinal biopsies done because there is no way I am going to start eating wheat again (and you have to eat wheat so that your intestinal mucosa develops the characteristic lesions that are looked for with the biopsies.) I think I developed these food intolerances because I have hay fever, meaning that my white cells are easily offended, and I had H. pylori. H pylori infects the stomach and punches holes in gastric mucosa through which intact food molecules can presumably pass and offend white cells. I managed to get rid of the H. pylori infection, but unfortunately, like elephants, offended white cells have very long memories. At least I haven't developed any new food intolerances since clearing the H. pylori. I mention these symptoms to illustrate that just because someone has iron overload doesn't prevent them from having something else as well - and maybe more than one something else.
I don't have the thick blood problem that Sheryl describes - I bleed very easily, which is very useful when having phlebotomies. However, given how easily I bleed - for example, I bruise for no reason and have had bleeding complications after every surgery I have had - I think I may have some sort of as yet undiagnosed bleeding disorder completely separate from my iron overload disorder. My bleeding tendency was the reason that I didn't have a liver biopsy done when iron overload was first considered. On the plus side, my very heavy periods - probably the equivalent of having a phlebotomy every 6-8 weeks or so - probably protected me from iron overload for years, even causing me to be iron deficient off and on.
I hope you're not sorry that you asked! - and that there may be some bits in here that are helpful for you . . . .