Hi, Having just been diagnosed with type 1 Hereditary Haemochromatosis, I'm wondering if it could be the reason I have the problem with my heart, I've got a heart monitor fitted and it's checked every 6 months, but no-one seems to know what's wrong. Has anyone else experienced anything like this? I would like to know if it's connected.
Thanks.
I'm 40 now but about 6 years ago they found a wenkebock on my heart monitor. Before that I had had bad heart palpitations. They attributed it to my elevated iron
Thanks Zach, when I get to see the liver specialist I can check with him/her, it looks like it's a possiblilty.
Hi there
I am waiting (patiently!) to be officially diagnosed but GP seems to think it's hemochromatosis
I too have really bad chest pain and had an awful experience with my heart actually seemed to be 'rocking' my body whilst sunbathing on holiday! It was really frightening at the time. GP also says I have a heart murmur but no one ever mentioned this before I became ill?? I do think it's connected to HH and I'm hoping I get my results and start treatment soon
Hope your doing ok? X
Hello, I also feel like my heart is jumping out of my chest, but trying not to worry as I also think it's connected.
The other thing is getting severe pains in my abdomen causing me to sometimes pass out, I heard that could also be a symptom. I have an appointment with the haematologist on the 4th of September so I'm sure I will find out then.
I hope you don't have to wait too much longer to get diagnosed.
Very best wishes. xx
Thanks primrosegirl I do hope you get sorted out next month when you see the haematologist and the severe stomach pains go away. Keep in touch as maybe we can help each other and have rant now and again! Best wishes for now
I will certainly let you know what happens, and yes let's keep in touch
Hi Chelle, hope you have had your results and are being treated now.
Just to let you know I am having my first venesection this afternoon having seen the consultant on Monday, he wants me to have it done fortnightly , so I will let you know how it goes!
Best wishes,
Hi primrosegirl
Hope all goes well for you at your first venesection today. Let me know how you get on hope it helps ease things for you xx sending hugs xx
I guess I have all this to come as I've just got my results back and have HH my GP has referred me to heamotologist so should hear back in a few weeks Feeling a bit bewildered by it all to be honest as they don't seem to tell you much so don't what to expect?! Did you feel the same when you were told? Will need to get rest of my family tested too
Keep in in touch and hope everything went ok for you x
Hi Chelle,
All went well, I thought I was fine, but before taking blood the nurse took my blood pressure and it was through the roof!! So I must have be more stressed about it than I thought. The girls there were so helpful and as it was my first time I kept asking questions and they were very knowledgeable which helped a lot. I even got tea and chocolate cake!
I do hope you hear soon and get started with treatment, I'm sure you'll start to feel much better mentally also.
Best wishes,
Hiya primrosegirl
So glad to hear your first session went well, apart from the high BP.... You sound like me!
I always get stressed and my BP shoots up whenever I go to GP Hospital etc!
How are you today? I do Hope your feeling a lot better after having it done?
Not sure how long I will be waiting to get my first venesection done? .GP referred me yesterday but said my ferritin levels weren't too high so not too much of a worry?! It was my saturation index at 61% that was really high. How long did you have to wait before you got an appointment with heamotolgist? what's it like having it done not too painful or weird a feeling I hope??!
I sure do like the sound of the tea & cake though!
Do keep in touch and let me know how you are and how your feeling and getting on with your treatment its lovely hearing from you and for having a friend to share all this with.
I don't know about you but I'm still trying to understand it and come to terms with it right now. Hopefully will know more when I see the specialist
Bg hugs for now and hope your feeling a lot better today xx
Hi Chelle,
I was wondering, are in the UK? If so I think you should see a consultant within about 4 weeks, maybe sooner. As to the procedure, it is a bit strange if you have never donated blood before. Fortunately I used to work at Heathrow Airport and donated regularly while I was there. So if you've never done that, the first time will feel a little odd, as you have to constantly pump with you hand to keep the blood flowing out! Just keep chatting to the nurse about anything and everything and within about 15 minutes it's all over. No it doesn't hurt at all, just the initial prick which is a bit worse than a blood test because the needle is slightly bigger.The area where the needle went in is bruised today, but hopefully will be fine by the time I go next.
I feel great today and just hope the vein in my arm holds up!
BTW My ferritin was 711, no-one has mentioned saturation levels to me, so I have no idea what that means. The only thing they check for apart from ferritin, is haemaglobin to make sure it hasn't gone down too much.
Let me know when you get your appt.
Take care x
Hiya
My name is Michelle by the way and I live up in the highlands of Scotland, I guess you live down South? as you mention you worked at Heathrow airport?
As you say I should maybe hear something in the next few weeks and follow in your footsteps!
I have given blood before but that was quite a few of years ago. Glad you didn't find it too bad a procedure to have to endure. How many times do you have to go for venesections? Your ferritin level was a lot higher than mine, guess it all depends on that as to how often you have to have your it done. Are you having to have any other tests done?
Has it helped your chest pain as I know you were struggling, like me, with that, it's so horrible when it starts and I don't know if your the same but I get daily 'flutters' and constantly breathless with it Not to mention the lack of sleep every night, are you the same? Even though I'm so very tired all the time. Think I'd be more suited to a nursing home at the moment!!
Anyway I'm so glad to hear your feeling great today and hopefully well on your way to feeling well again and much more yourself
You go girl... xx
Best wishes & take care xx
Hi Michelle, I'm Jen.
I have to go every fortnight for the next four months and then see the haematologist. The only other test I've had was an ultrasound on my liver, kidneys and spleen and all were fine.
If you need more info why not look here http://haemochromatosis.org.uk/ (copy and paste) you can join for £24 per tear of as I did send away for the booklet for £8.99, mine came today and there is a lot of info there, including diet.
I don't get pain in my chest, just the ectopic heart beat which feels like it is jumping out of my chest!
I do hope it's not too long before you get some treatment to help your symptoms which seem to be much worse than mine.
Keep in touch
Jen xx
Correct text should read, "Per year, or as I did"
Hi Jen
Just wondering how you are? and how things are going forward for you?. Hope your still feeling great after having started your treatment?
I'm not quite sure what's happening with mine yet 🙈 as the info ( or lack of) you get seems to be non existent?! I did get my appt with the haematologist for November but I feel like I've just been told I've got this hereditary disease, to inform relatives to get checked, and that's really been it up to now!🤔 Not sure if I have to see heamotolgist first before venesections starts or what?? So for now guess I've just to cope with feeling yukky tired and having joint pain. At least my chest pains have got a lot better 🤗
How has your ectopic heart beat been? Hope it's cleared that up for you having started the venesections. Do hope so, guess things can only get better 👍
Have a good weekend Jen and keep in touch
Michelle x
Hi Michelle,
Sorry to hear you're still feeling yucky, I have been ok, the heart still seems to be jumping, but not too bad.
I see the cardiologist in about a fortnight so I'll tell him about my diagnosis and see if he thinks it is all connected.
Regarding your appt to see a haematologist, yes you have to see him first before any treatment can begin, but he got me started on venesection straight away, so at least there was no more waiting,
Sorry I pressed the enter button too soon!
So as I was saying I have another venesection next Wednesday, so it will be interesting to see if and how much the numbers have changed since the last one, but I'll let you know.
Keep positive, it won't be long now before you see the consultant ( haematologist ) and hopefully the answers to all your questions.
Take care,
Jen xx
Good to hear doing ok Jen.
Hope all goes well next week and the venesections are taking the numbers down rapidly for you. I agree that you should mention to the cardiologist about the rapid heartbeats as it does sound like it could be connected to this.
Yes will keep positive I might get a venesection in before Christmas if my appt to see heamotolgist is in November and they start me straight away...hopefully! Then I'll definitely be able to boogie on down at the Christmas party !!! 💃😂😂👍
You take care & speak soon
Michelle xx
You're better seeing a haematologist. I have to suffer a gastro and they may know about livers but they know little about haemochromatosis. I thought it was criminal when he told me,a light drinker,to abstain from alcohol for 3 months when my ferritin was at dangerous levels (1500) but he told someone whose ferritin was 5500 the same.How he didn't get cirrhosis due to his negligence I don't know.