Symptom Question

You're the first person I've seen on here who's a girl that's close to my age. I was diagnosed with haemochromatosis when I was 21 (I'm turning 25 tomorrow) and the only reason that I was was because I had been really tired all of the time (I think for about a year) and my anxiety made me too paranoid not to have it checked out.

There have been a few discussions on here in relation to depression/anxiety and how it could be related to iron overload but if I'm remembering right I don't think there was really any concrete information. Like you know, I've suffered from anxiety my whole life. It wasn't nearly as bad when I was a kid, I would just get stomach aches when I was nervous about something, and then in high school, and it's silly that I didn't put two and two together, but I would get a stomach ache every morning on the bus ride to school and it would always go away once I got there. It only got worse my second year of University when I had a practicum coming up, but anyways.

And I'll tell you what my specialists have told me (one of them even has haemochromatosis). When they first told me that I had iron overload they explained to me that because I was so young, zero damage had occurred. Granted, they didn't perform a liver biopsy to see if iron was sitting around it, but I did have an EKG done on my heart and I had a lot of blood tests in relation to this. They were also taking into account the ages of all of their other patients/cases and when damage occurred, how long they had gone without seeking treatment, etc. They said that it can take a very long time for any damage to occur, so I was very lucky. She specifically said to me (and so did my new specialist) that because I was getting regular phlebotomies and I didn't let this go on for very long and I was continuing to take care of it, my life expectancy wouldn't be any different than a person without haemochromatosis. She also said that there would be no infertility concerns, etc., so thank god. Even at 21 I knew I wanted to have kids in my future and if that were to be a problem I would've been heartbroken.

I was also told that they generally don't test kids under the age of 18 for iron overload. Do you know if you had it when you were younger? I know when I was a kid I was actually anemic.

Were you told just how high your iron level was? When I was diagnosed mine was around 600 and it's at 40 right now. I'm just wondering because, as I'm sure you're aware, extreme fatigue is a symptom of both anxiety and depression, so without your second blood test results, I'm just wondering if your problem is actually iron overload or not. I remember when I was diagnosed I went through about six months of blood tests where my rate stayed pretty steady.

I will admit that when my anxiety got very bad, my iron levels were high. But at the same time, I've had my anxiety be a little bit worse even when my levels had dropped a lot. I don't know if the same thing applies to anemia or anything like that, but my anxiety has bothered me when I was on the opposite side of the spectrum after many phlebotomies.

I'm also just trying to think... I know when I went on Effexor for anxiety I did have to stop going in for phlebotomies for about eight months. That was because when I go in for them I've had a lot of issues because you can't see my veins and I drain so fast that I need an IV bag or else I'll pass out. And I've had bad experiences with being prodded numerous times and it's painful when that happens, so the whole thing tends to just give me a big anxiety attack, which is super fun, considering this is something that I have to do for the rest of my life.

It's been much better recently though. I'm more stubborn about what I require when I go there and I don't let myself think about the bad stuff. I just focus on one step at a time and my anxiety has lessened when I go and get them done.

Not that I want to freak you out or anything, I just want to give you an idea so that we can compare situations.

Thank you so much for your response. Honestly, it's really helped with my anxiety. And it's good to know another young girl who is going through the same thing.

In regards to the anxiety, I was a lot like you. It started when i was young and it wasn't really a big deal. I suppose that's why i never thought it was connected to some health issue. I thought it just came on naturally. Gradually it got worse and worse until I stopped wanting to try new things and go out with friends. Sometimes I didnt know if it was the the anxiety or the fatigue. But as you said, they are connected.

Sorry, I wasn't very clear in my last post.. I got my initial blood test results over the phone and was just told that my iron levels were high. I didn't get a number. My Dr also said that she was looking back at my records and apparently my iron levels were high in 2008 aswell (which I don't remember being told about at all) and because of this she would like to test for hemochromatosis. So i'm guessing it may have started around then? perhaps a bit before because I had already had the fatigue/depression by then. This just worried me a bit. It seemed like a long time to have an iron overload without doing anything about it. Having said that, I have had blood tests since 2008, probably 2 or 3, and none of them showed any problem with iron.

I understand what you mean about still having anxiety issues even though you have be de-ironed. I was reading quite a few posts from people who felt the same way. Perhaps it takes time to slowly calm down. I have a feeling that my anxiety will definitely be reduced if I get a diagnosis and a positive outcome.

It's good that you are slowly becoming less anxious when having to give blood. I guess we will both have time to get used to it.

I'm about 97% sure that I have hemochromatosis. It just all makes sense. I have read so many posts from people who have spent years thinking they were hypochondriacs or that it was the anxiety or that they were suffering from some other health problem that could never be found. It's a relief really. I was getting very sick of being told to just "get more fresh air and exercise and a good night's sleep". As I'm sure you and most people of this site would agree, the fatigue goes far beyond just being a little sleepy. I'm just hoping for the best and that it hasn't started to cause damage. From what you have said, it sounds like it would take a substantial amount of years to start to effect organs and cause major complications. Even so I would like to be sure. Was it suggested to you by your Dr that you have the EKG and additional testing?

I must say, this week has hit me hard. I have never been so fatigued. I've also been having dizzy spells and feeling quite off-balance. I'm sure the fact that I've been worrying about it so much hasn't helped. I'm keen for all this to clear up so I can get on with life!

Thanks again for all the info and reassurance, it's been a massive help

Penny

I really do know what you mean. I find that I'm normally so used to the fatigue that it doesn't bother me too much, but then there are some days (and I remember December 2012 I was like this every day at work - I think partially because I would get anxious) I would feel cloudy in the end and almost like I never quite woke up. There were a couple of times I could stumble into the wall while turning the corner, things like that. And it also really doesn't help because the more symptoms I feel, the more anxious I get which in turn, gives me more symptoms. And it's frustrating as well because haemochromatosis symptoms are surprisingly similar to those of anxiety. Foggy headed, fatigue, shakiness, etc. Wtf? Who invented this crap? It's so awful lol

And I started exercising a lot about two years ago and it never made a lick of difference. It still hasn't, fatigue wise, although I do look better than I ever have so that's a bonus lol.

And to me it makes sense if your iron levels weren't an issue in the past few years but now they suddenly are - that's what happened to me. I grew out of my anemia that I had as a child and I was fine all through high school and then it was like it suddenly hit me or something and BAM! High iron levels. I don't know what happened to cause the gene to suddenly kick in, but it did.

The EKG was just my doctor being cautious. They told me that it wasn't at all necessary because I was so young and there was zero chance that damage had been done. And just recently I spoke with my specialist about the infertility problems because they'd been on my mind and he told me that those kind of problems generally don't occur in a woman until she's older than we are and her iron levels have been at least at 2000 for a number of years. And I was thinking too, to make myself feel better beforehand, loads of woman have babies and then don't discover that they have iron overload until they're at least in their 40s, so one can assume that this has been an issue for them for a long period of time, yet they had no problems conceiving.

And what I was told is that because of my age and because I'm being proactive about it and I'm not missing any phlebotomies (or venesections, same thing) I'm not at a higher risk for anything because I didn't allow my body enough time to let the iron sit around any organs. I remember when I first talked to her about it she said, "if in the future when you apply for life insurance and you tell them about your haemochromatosis and they want to deny you, tell me and I will write them a letter explaining that you have it but have the same life expectancy than anyone else who doesn't have it."

So try not to worry about anything unless you get a negative test result back. I know what it's like with anxiety and I know it's hard not to worry, but trying not to is the best solution for you. When someone puts an idea into my head, I tend to semi-freak out about it, I just can't help it, and I don't want you to go through the same thing.

Now I have an answer from the Iron Disorders Institute "Guide to Hemochromatosis" but I am worried I will make both of you more anxious about knowing it. I discovered it really is a physical problem and not a psychological problem. Theoretically that means, as you deplete your iron stores, those feelings will go away. So that's good, isn't it?!

While anxiety is not really listed as a symptom, a feeling of panic comes with arrhythmia, which is a symptom of HH. This is such a flighty symptom, it rarely seems to show up in a 30 second EKG. A 24 hr holter EKG could pick it up. Anxiety is usually caused by not knowing enough about something that bothers you, so (to me anyway) knowledge is an antidote to anxiety. Have a look in the library for the above mentioned book or look on their website.

But everyone is different. Just as you two have proven with your early diagnosis of HH from symptoms despite menstruating. All the literature will say that it is just not possible. [HH drs - please take note!]

You are both lucky to have had such an early diagnosis, and if you are menstruating, and having venesections to get that toxic iron out of your body then you are off to a great start because it really does not take too many years of undiagnosed, untreated HH to cause damage for some people. As I said everyone is different - but you are both on the good side of it now.

The main thing is to keep up your venesections, because really, that is the only, best and effective treatment, and think about how lucky you are compared to those who do not know they have it.

Your history is more proof positive for screening for HH. The earlier the diagnosis and treatment, the better.

Megan, the book also explains why children can be deemed to be anemic when they have some infection like grumbling tonsillitis or whatever, as hemoglobin can drop when infection is present.

I think from this point forward I'll try to keep better track of when, how often, and how prominent my anxiety attacks are. I now have an answer as to why I was so tired the last year (my becoming anemic because my iron was too low - which I'll always take over it being too high), but maybe now that I know what the cause of my serious fatigue was, my anxiety will lesson, like you said.

I should try and be my own case study. This passed week won't count though because my sister was in the hospital having her baby!! So I've been pretty stressed with this, so this one is just a total write off lol.

It's still frustrating though that doctors don't automatically test your iron during regular physicals. It just baffles me. It's so, so important and they just seem to not give a crap about it unless the patient stresses that they've been fatigued recently.

That is something that really needs to change.

Penny, any updates on your diagnosis? I know it's only been a few days

We will just have to plug away at making people aware of the condition so that they will ask for the tests in the meantime. There seems to be a lot of activity in your area regarding support groups if you look up your country's association website and input your city.

On a lighter note, did you watch "Vikings" (tv drama), a film made in collaboration by Canada with Ireland? There were subtle hints of their haemochromatosis condition. First the king/chief was impotent, the main character who eventually became king too, recovered from massive blood loss from wounds, another viking character announced that if he had to stay soaking wet from the rain any longer, he would 'rust'. They seemed to have a metalic coating on their skin - could have just been dirt! The rusty fellow has a bluish/greyish tinge on his face which could indicate diabetes - he is thinner and smaller than the other vikings.

If you did not know about haemochomatosis, you would miss these hints.

It's actually funny, I kept thinking that Travis Fimmel (Ragnar) was so familiar until I googled him and he used to model and I remember seeing him in Seventeen magazine about ten years ago or something lol

I didn't even think about haemo while I was watching it but you're totally right!

I kinda half watched a British doco on the health of past royalty with haemo in mind too. I caught a statement that King George I or II?, when autopsied found his heart chamber/cavity was full of a thick black substance - iron, I wonder? I will have to rewatch it properly next time I get a chance.