Symptom Question

Allergies, blood and immune system
1

Hi everyone smile

Sorry if this all sounds a little silly... I just had a couple of questions and i thought this would be the best place to ask. I have been doing some research and not really found the answers I'm looking for.

I'll start from the beginning. I'm a 19 year old female. I have had fatigue and weakness (varying from moderate to extreme) and depression and anxiety for around 8 years now. After many many trips to the doctor, I have finally been told there is a good chance i have Hemochromatosis. I had an initial bloodtest that showed high iron and am now waiting on the results of a second blood test to see if i have the gene.

I read online that unfortunately symptoms do not appear until damage has already started. My question is.....because i have had the fatigue/depression, does this mean that the hemochromatosis is more advanced and therefor already done damage? or is fatigue and depression/anxiety a normal symptom of early hemochromatosis and nothing to be concerned about? How many years of iron build up does it take to start to cause damage? can it be done in 8 years?

I hope all that made sense. As you can probably tell the anxiety is eating away at me. I'm really quite worried about all this, even though i havent got a proper diagnosis yet. Any information would be very much appreciated!!

Penny smile

2

Penny,

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.

3

Also, just back to the anxiety thing, I so far haven't really found any correlation between the amount of anxiousness I feel in relation to the level of my iron.

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.

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Hey Megan smile

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. smile

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

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PS: Did your Dr say anything about the risks of liver/heart problems now that you have been de-ironed? Is there still a slightly higher risk of developing complications compared to the average person? Or is the risk as great as someone who hasn't got hemochromatosis?

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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.

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I have often wondered which came first regarding depression and haemochromatosis - like the chicken or the egg. I was thinking that depression was caused by a lack of diagnosis and the frustration involved, like being told one has CFS or menopause (when I was using HRT), thyroid when my levels were normal, or housewife neurosis, and other stupid answers.

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.

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Sheryl,

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

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Both Megan and Penny should be part of a study by HH researchers!!

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.

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I do watch it!

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!

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I was surprised to find that Travis Fimmel was Australian, and so is the new bird (the pregnant one), well the actress, anyway. I was going to input the info about haemochromatosis in a blog (IMDb) on the drama, but they wanted my cell number or credit card number for authentication, so I backed out immediately.

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.

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Hi Sheryl and Megan smile

Thanks so much for your input Sheryl. What you said made a lot of sense. When my "anxiety" gets really bad i have often thought it feels very physical. I feel a flutter in my chest and almost a pressure. I've also noticed that this can happen even when I seem to have my mind on other things and I'm not feeling too anxious. I suppose I thought they were anxiety attacks, and I was at the point of having random attacks. But arrhythmia seems to make a lot more sense. Do you know if it is a common initial symptom of HH or a more advanced one? I'm just wondering that because I may have had it for a few years, that it could be a complication forming? hopefully not. But you say that when you have been de-ironed it will go away? Did you have arrhythmia as well Sheryl or just the anixety?

Megan- no results yet. I have an appointment for Wednesday but will call tomorrow morning to see if my Dr can fit me in in the afternoon. I'll let you both know what she says.

And I have to agree, this is definitely a problem that does not get enough light shed on it. I live in Australia and I honestly had never heard of it and neither have any of my family and friends. I've been going to the doctors for years complaining about fatigue and anxiety and one of my blood tests from years ago even came up with high iron yet the possibility of HH wasn't entertained at all. My grandfather was a doctor and always told me that illness and disease do not age discriminate. Luckily I switched Drs and this one seems a lot more open minded.

Hope that all made some sense- I'm having a very fatigue-y day lol

PS: I just remembered.. I had a bloodtest in September last year. The iron level was fine but my liver enzymes were slightly high. Maybe that also has something to do with it? Anyway, I'll talk to the Dr about it and let you both know what happens. Thanks for all the info!

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Hi Penny, I too get arrhythmia which sometimes gives me an anxious, panicky feeling, when there is no reason to feel that way. I have noticed that it comes on when my ferritin iron levels have built up, and I usually am feeling more fatigued and achey as well. Then when I have a venesection it goes away.

I have a very low optimal level of ferritin iron - I feel best when my level is about 34. You, too, will find your optimal level when you keep records of your blood tests and note how you felt at that time. Eventually you will get it. Take note of your optimal level, not when your dr thinks you are at the right level. Hopefully, your dr will refer you to a haemotologist who can monitor your blood levels better, and take you down to <30 to get the ferritin out of the body. As you are menstruating, it will take special monitoring.

I was feeling very concerned about this arrythmia because at first I did not feel it happening, a dr listened to my heart and sent me off to a cardiologist who did a 24 hr holter test and found I had 21,000 extra heartbeats in 24 hrs. Two cardiologists just kept shrugging their shoulder about it. I fought to see a specialist cardiologist. I was worried about build up of iron in my heart muscles, etc. The wisest advice I got was that, even if there was a build up of iron deposits in my heart, there is nothing that can be done to remove other than venesections. It can't be cut out, nor drained, etc.

I bought a heart monitor that runners use - a strap around the chest which sends a signal to a wrist band. I was able to recognise when I was really having arrythmia and tried to relax and make it slow down. Because I was getting bio-feedback from the wrist band, it was quite easy to do. Mostly now, I feel it when I lie on right side to sleep. Sometimes it is a boom, boom, boom, and sometimes it is a faint very fast flutter. I just make it relax and it goes back to normal.

So, my venesections are very important to me, and I see them as positive progress towards maintaining health. I can't say I will ever have good health because too much damage was done as it took 9 years to get a diagnosis, made worse because I had a hysterectomy before the onset of the symptoms, which is far different to you.

Another spanner in the works happens when my oestrogen supplements are insufficient for my body's needs. When this happens, I will suddenly, for no reason, get an overwhelming wave of depression, or anxiety, and insufficient oestrogen causes arrythmia too. So it is such a two-edged sword for me. But I have come to recognise which is causing which.

I have been on 3-monthly maintenance venesections for years now, and boy, do I look forward to them. Even if they have to make 4 attempts to get enough blood out of me and I end up looking like a pin cushion, they are my friends.

An important marker that identifies Hereditary Haemochromatosis is the TS%. It has to be >40% for it to be HH. If it is not, you might have a high ferritin because of say, fatty liver.

I am from Australia too, so have a look at the Haemochromatosis Australia website. If I put in the URL, you will not get this post for a day or two, so google it. I am a member and we are having a conference in May in Melbourne to which I will be travelling and taking part in.

However, I get a lot of information from the Iron Disorders Institute in the U.S. Look up their forms as well.

Looking forward to hearing how you go with your tests.

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Thanks for all the info Sheryl- You're definitely up to date. It's great that you've made sure to research everything. Are you able to have more frequent venesections because your optimal level is so low? Or is that not a good idea? I'm thinking I should definitely get my heart checked out, just to make sure. Especially since I may have had Hemochromatosis for a number of years. I'm very keen to get a diagnosis!!!

I've just been checking out the Iron Institute website and been reading about HH and JH (Juvenile Hemo)

Megan- Is this what you have? or do you just have HH?

I'll let you know how it all goes, hope you both have a great week

smile

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Oops- I just read further into it and it says that the symptoms to JH are complications that come on quite early (heart disease, liver cirrhosis ect)

I'm guessing you don't have that Megan smile

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Lol no, I'm fairly certain that I don't.

I actually had an anxiety attack the other day - Friday (my birthday, dammit!) Normally when my heart skips a beat it will only be one single beat, and then it won't happen again all day. But it skipped like, three in a row and when that happens I get immediately anxious, even though I know there's no need to. So it took me a while to really calm down. I'm thinking I'll write down every time I have some sort of anxiety attack and see if there's a link between what my levels are. So I guess my first one will be March 28, 2014 with an iron level of 40.

I'm feeling like my ideal level will be higher than yours, Sheryl, but I'm aware that doctors aren't very concerned with the level of your iron unless it's under 12 and over 200. I'm going to wait a few months before asking my doctor if she can just send me one of those sheets in order for me to just schedule a blood test to see what my iron levels are at at that time, and then I'll have a real think about how I've been feeling. I might send a message off to my Specialist as well and ask if I can have a copy of my file so I can see what my levels have been every time.

And also, I wonder if maybe keeping a journal every day would be a good idea so I can really track my progress. That's it - that's what I'll do. I'll just write short entries every day so that I can literally see what's going on with my body in comparison to what my levels are.

And this is a bit of a side note - but I don't recall starting to really feel fatigue until after I had mono when I was 18. That illness really, really wiped me out and for the rest of that year I caught practically everything that went around. When I was first diagnosed, I proposed to my doctor that maybe that was part of what made my iron overload begin (I had done a lot of reading and I understood that haemo can sometimes start after a serious illness over a period of time) but my doctor just shot me down, which I really didn't appreciate at the time.

Have either of you heard of that? I know now that I do have the mutated gene, but I'm just wondering if that's what could've set my body off? I was sick for about two months and I remember I was told specifically not to play any contact sports or to exercise because my organs could rupture since mono swells everything up.

17

Happy Birthday for last Friday, Megan!

JH is very bad - generally those with it do not live very long. Without checking for sure, I think they have a diffferent type of HFE.

Mono does cause terrible fatigue for at least 12 months. It would also cause a high ferritin iron buildup because of the inflammation and infection, and that is how you would have been even if you did not have HH. Generally that subsides as you recover. So you were kind of right. Your doc probably thinks you were saying that the virus? made you have HH. They do jump the gun a bit instead of listening. And they were right to tell you not to play strenuous sports because you heart would have weakened, and I have heard of young people dropping dead from heart failure after going back into sport too soon.

As your HH did start early, maybe there is something more to it. Something else for researchers to take note of.

Would having a heart monitor like I described make you more anxious or relaxed because you knew what was happening and you could start to gain some control over it?

I am off to have some surgery in a couple of days - secret women's business, the result of being oestrogen starved - so you may not hear from me for a while. When I am back on board, I am looking foreward to hearing how you go with with your results.

Penny, if you have a problem with your doc regarding HH, phone Haemochomatosis Australia to see if they have a dr they recommend near you.

Penny, if your dr discovers your arrythmia is quite serious, and you do have a high iron level too, do not let him give you beta blockers or calcium channel blockers. See if there is something else. The blockers dilate the blood vessels and let iron into the brain. I have experienced it - brain went all foggy, could not put more than 2 words together because the words could not reach my tongue, got lost driving, could not read traffic signs - took a few years to get my articulation back.

But don't stress about it till you come up against it - just be forewarned. I have not found anything about this happening amongst research yet.

18

Hmm, that response cut off a couple of paras:

I was saying that I was off in a couple of days to have some surgery - secret women's business, the result of being oestrogen starved - so I will be out of contact for a few days.

Penny, if you have a problem with your dr about HH, phone Haemochromatosis Australia to see if they know of a dr near you.

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Oh, it was there!!!!!

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If you think you were young being diagnosed with this disease I gotta say I was diagnosed whenever I was 17. The only reason I found out is because whenever I went to donate blood they said my blood was almost black and too thick. And. Thats whenever I passed out then later on that day I passed out again after eating food. The doctors said that it wasn't a symptom they also said abdominal pains wasnt or fatigue. But I have all the symptoms y'all have described I feel like our doctors should really pay attention to this in younger people aswell since I was the youngest one diagnosed with this disease. I still haven't gotten my liver MRI results in im hoping my liver is okay because I feel like I been going down hill lately.