Is this iron overload?
Posted , 5 users are following.
Glad to have found this forum. I have been feeling unwell for quite awhile; bodyaches, low-grade fever, fatigue so had some blood work done and my ferritin level was at 495 and was flagged on the online report. Strange thing is that when I saw my dr. In a follow-up he never even mentioned it (this was before I saw the report online). So I'm just wondering if this number is high and should be investigated further and if so, what further testing would be recommended? I have also been seeing a naturopath and his thoughts were that this level is cause for concern and he gave me a chelation medication called DMSA to bring my level down. I feel confused as my dr. didn't bring it up so I am holding off on the medication until I talk to him about it next week. My grandfather had hemochromatosis/cirrhosis of the liver and his daughter (my aunt) had liver cancer but I don't know if she had hemochromatosis. I just wanted to get some opinions on all of this. Because I've been feeling so lousy for so long I'm really starting to feel very scared that something really not good is going on and this ferritin test is about the only thing so far anyways that has come up as suspicious. Any thoughts or advice would be greatly appreciated.
1 like, 11 replies
mike80628 Happyglamper1
Edited
Hi. Welcome to this forum. I'm Mike. First of all, please don't be scared...it can and will be dealt with from now on. Normal ferritin range for a male is 50-300. So, you're a little over that. Mine was 2000 last year! But, they caught it and I've had weekly phlebotomy treatment for a year. My level was 38 two weeks ago!
It could well be that you have Haemochromatosis based on your symptoms and family history. Get yourself tested asap. Simple blood test..gene test. Then you'll know for sure and can get some treatment started which will just be giving blood for a while to get your ferritin level down. Your doc may have ignored it because it wasn't hugely high. But, it is higher than normal and your family history could be a clear sign that you have it. Don't be scared at all...if you have it, it will have been caught early, and treatment will get you back to normal and should help alleviate some of your symptoms. Get tested asap..that's vital, then take it from there. We on this forum are here to help. It will be fine. Once you've had the test, get back to this forum and ask any question you want. I can give you some diet tips etc , and advise you about phlebotomy treatment etc. Here to help in any way. Next step then is get tested! Don't worry at all about outcome, if you have it, you'll join the Iron Gang here and we'll look after you. Chat soon. Mike.
deidre74971 mike80628
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mike80628 deidre74971
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Yeah...it's a great forum....people have supported me esp early on in my diagnosis....a great bunch!
lorraine73505 mike80628
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Yep - totally right there Mike. I can't wait until Saturday to see my specialist and start getting my levels down.....
mike80628 lorraine73505
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lorraine73505 mike80628
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Mike, last time I was checked it was 2,493. Although that was a couple of months ago and its taken me this long to get it progressed to seeing a heamatologist (on Saturday) and then hopefully getting some blood out! I have no idea why the GP couldn't just send me straight to phlebotomists at the local hospital or surgery? Anyway, will know more after Saturday I hope!
mary92507 Happyglamper1
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Welcome! I have felt the same as you and it's so horrible feeling unwell and being unable to sort it. Your amongst some of the nicest people ever so you will never be alone. As Mike said get tested then you can get treatment started.
Hugs
Happyglamper1
Posted
Thanks to everyone for the comments. I saw the naturopath again and he was really recommending the DMSA chelation meds again. I left there thinking I would take them but of course I was back googling things and I got scared again. Does anyone have any experience taking this medication to reduce iron? Because my PM dr. didnt even mention that my ferritin was out of range and I haven't had any of the other iron tests done, it feels like I'm putting the cart before the horse. I have another week to wait until my next appt. and in the meantime feeling awful and the uncertainty of everything is ramping up my anxiety. Just so worried that if it's not a problem with my iron then what could it be. Could being at a level of 495 cause someone to feel so bad?
mike80628 Happyglamper1
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Happyglamper1 mike80628
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I had the DNA test a week ago and now I'm impatiently waiting for the results. I've heard it can take up to 2 months, I sure hope it doesn't take that long. I'm just wondering what the chances are that I may have this, I will actually be shocked if I do. I had an iron panel done again and my ferritin has dropped from 495 to 408. My iron saturation is 50, TIBC is 56 and iron is 28. Could there be a chance of having hemochromatosis with these results and the fact that my grandfather had it? I am just feeling so awful; tired, body aches; I woke up all through the night last night by these aches and pains. I do have times when I don't feel too bad, is this something seen with this disease? I feel I'm also having anxiety which can bring on the same type of symptoms which makes it even crazier, not sure what is causing all the feelings of unwellness. Any thoughts would be greatly appreciated. Thank you.
mike80628 Happyglamper1
Posted
Hiya...welcome to the forum. From what you have said about your grandfather. And your symptoms, and even your ferritin levels, it does sound like you have Haemochromatosis, though we won't know for sure until your DNA test. My results only took a week, so I would chase yours up.
No one wants to have Haemochromatosis, but in a way, if you find you have it, at least you'll know why you have been feeling bad, and with treatment, you should start feeling a lot better. If you have it, you'll have to start phlebotomy treatment, having blood taken from you weekly, until your ferritin levels get down to 50. So, don't worry about having it...not nice to be diagnosed with a condition, but , if you have it, you can be treated, and then start feeling better. My level was 2000 last year. It was 21 a few weeks ago. I feel good now. I'll need to give blood 4-6 times a year for the rest of my life, but as a blood donor, so I'm happy with that. Apart from that, it's not gonna impact my life at all..just get on as normal. All will be well...we are here for you to support you and answer any questions. Keep in touch...let us know your results. Take care...ask any questions you want....Mike.