Newly diagnosed HH

Hi Samantha

?I felt the same after being diagnosed in September last year, I think everyone feels anxious worried and alone, but don't worry you will soon come to terms with it.

Do try and find out as much information about HH as possible and ask as many questions as you can.  They are a great bunch on here and will usually help and give advice to newbies so ask away! As soon as they start you on a treatment plan you will start to feel less anxious and overwhelmed by it all. At least now you know you have HH and it can be treated.  Best wishes x

Hi 

I felt exactly the same but that was 10 years ago and now just very thankful that I was diagnosed and able to monitor before any serious damage had occurred.

Initial treatment plan was quite regular for me in the beginning but now down to once or twice a year.  

I would suggest you keep a record/track of your results after each visit and ask questions rather than worry.

All the best.

 

Hi Samantha, I think we all probably feel like this, but you are definitely not alone.  I have just had my 12 venesection today and I feel fine, just a bit tired.  There are a lot worse things to be diagnosed with, so just remember that it can be treated and once you are in maintenance, you will be over the worst and have come to terms with it.  I was angry to begin with, but now I just accept it and get on with my life.  Good Luck!

Join the Haemochromatosis society uk they are so helpful and there are a lot of grouos on Facebook where you need never feel alone

You aren't alone Samantha, I think we all feel the same at first, but the nurses that do the venesection are so nice, as are the people going through the same thing on here. I was diagnosed at about the same time as Chelle last September and have just had my 13th venesection, it will soon become just a part of your life. So good luck and let us know how you get on.

So sorry to hear. But you don’t need to feel alone. We are always here to help each other. 

Venesections are hard to deal with but do get easier 

If I can help in anyway just ask away xx

Yes. I had an anxiety attack soon after diagnosis. It didn't help I was worried about mum too at the time as she had just had major operations to remove cancerous tumours. I'm a worrywort at the best of times! I kept searching online for information but there doesn't seem to be very much. I have to be strong for my family so am trying not to let it get to me. There are still down times but at least I know what's wrong with me now! I've known for 4 and a half months I have hh. Have given blood 3 times so far. And looking forward to getting down to maintenance level to see if I feel "normal" with no tiredness and pain all the time. You are not alone with these feelings at diagnosis. I hope it helps to know that. Look after yourself. XXX

The first and main thing to remember is that we have been diagnosed and alive!! Next thing is to get to maintenance and always keep up with Apts to check on the rest of organs. Pain Re arthritis issues doesn’t fully go after you have your phlebs  but I think it does help, also you can try supplements eg curcumin, N.A.T. Alpha lypoic. I do and I believe they help as have experimented a bit with them. Other than that fingers crossed they come up with a serum injection that can tell our genes how to work more efficiently. 

It can be easy to get scared and confused.  I had a very high ferritin level and initially it looked like I had more organ damage than I ended up having.  3 years later I’m active and happy.  

The bad news:  depending on your levels you’re may need weekly blood draws.  The procedure is really painless and I have gotten to enjoy the people at the clinic.  It can just leave you so tired.  The biggest complaint is the fatigue and brain fog.

The good news is you’ll always have good days which will stretch into good weeks and you’ll likely see problems clear up.  Heart issues and digestive issues primarily.  

Don’t overwhelm yourself.  Starting deironing and you willing go in the right direction.  Scan the forum, ask questions!  Also a healthy diet goes a long way for us.