Symptom Question

Hi Sheryl and Megan

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!

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.

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

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

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.

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.

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.

Oh, it was there!!!!!