Effect on the heart

[Chirley]

Hi,

I've had a high ferritin of greater than 5000 which is now down to less than 1000.

Over the last 6 months or so I've been getting a slow heartbeat. Today in daycare my pulse was 41 at it's lowest but hovered between 41 and 49 at it's highest. I told my doctor when he came to see me and he felt my pulse and said he thought it was higher than that, made no further comment and seemed to dismiss it. It has not been over 50 all week.

Has anyone else had this problem? Do you know if damage from high cardiac iron can cause bradycardia and finally, am I right to be concerned?

Regards

Chirley

[Marlene]

Chirley,

With your history, I would be concerned about it. You are trying to be proactive with your healthcare and trying to avoid "crisis management". Maybe you should ask him why he thinks it's not an issue. And what point, does it become an issue. And if you've been keeping track of it, you have trending data versus just the one reading he took. I don't know if it's a direct result of high iron in the past. You've got more complications than most with neurological issues as result of the copper problem.

Marlene

[Birgitta-A]

Hi Chirley,
As Marlene wrote you should be concerned. I think iron overload more often gives ineffective and fast heartbeat. As you know low potassium will give low heartbeat and as far as I remember you have had low potassium.
Kind regards
Birgitta-A

[Chirley]

Hi, thanks for your replies. I wasn't sure if I was being concerned unnecessarily seeing as my doctor dismissed the bradycardia.

I've had my electrolytes tested and they have returned to normal since I ceased the Fludrocortisone so that's not the cause of my slow heart rate.

I'm in daycare again today and my BP is 105/54 and pulse is 44, the nurse who took the obs didn't remark on it at all.

I won't see my doctor again for another 3 and a half weeks because my next copper cycle has been postponed due to a public holiday and another doctors appointment for my eyes.

I don't feel comfortable waiting that long with my heart rate being this low. I Googled copper and bradycardia and apparently there is a relationship due to interference with electrical conductivity.

Marlene, you're right about trying to avoid crisis management by being proactive but sometimes it's difficult to get people to listen. Maybe I should be more assertive (or scream and shout so I'm no longer invisible).

Regards

Chirley

[Marlene]

Chirley,

Sometimes I feel that they see so much that not much phases them. And if what they are focused on doesn't match up with your concerns, sometimes they don't hear you. When John was having all kinds of issues, I would make sure he and I agreed on the top one or three things we wanted addressed at his appointments and made sure we told the nurse. And then repeated that with the doctor. Can you put a call in to your cardiologist? I don't know anything about low heart rate but I would imagine there's something out there to help.

You shouldn't have to work so hard to get their attention.

BTW....glad your electrolytes are back to normal.

[Chirley]

Thanks Marlene.

I don't have a cardiologist. When I was in my early 20s I was referred to a cardiologist and was diagnosed with Paroxysmal Supraventricular tachycardia and a grade something or other pre systolic murmur.

I outgrew both problems and haven't been to a cardiologist since then. That doctor died years ago.

To be able to see a cardiologist I would need to be referred by one of my other doctors and because the hematologist doesn't seem concerned I can't see a referral coming my way.

I do have a tentative appt to see the Prof of metabolic medicine on June 12 but he has had 5 months leave (? Due to illness) and they are not sure he is returning to work. No one has taken over his workload because no one else was available in his speciality. We have such a shortage of doctors in this country.

Just like you, I try not to raise too many issues with the nurses or doctor. This was/is the only issue I discussed with either of them. I told them that I felt well with no complaints and my only concern was the slow heart rate which seemed to be gradually getting slower over the last couple of months. This was my one issue and it was dismissed as if it was trivial. Perhaps considering my other health problems it's not considered important.

Oh well, I have a break for a while now, maybe it's best to forget about it unless it causes a problem and just get on with the other part of my life that doesn't involve illness and treatment

Regards

Chirley

[Marlene]

That sounds like a good approach to take for now. I was wondering if your thyroid is OK. It's closely linked to your adrenals and maybe the steroids messed with it. It can take a while for everything to kick in once the steroids are stopped. You may want to ask about it at some point.

Too bad about the appt with the metabolic doc.

Take care....M