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Still waiting for vs!!

Posted , 5 users are following.

joyce1959
joyce1959

I was diagnosed in June this year with a ferritin of 950 and trans 75%. I waited three months to see the consultant and now I'm still waiting for vs. I've spoke to the nurse who coordinates the vs and she says she's waiting for the letter from the consultant to go ahead? They know I'm ill and suffering and I KNOW there are others who have much higher readings, but come on! Don't they go by symptoms, desperation?

Ok rant over!

1 like, 17 replies

17 Replies

  • gina38206
    gina38206 joyce1959

    Posted

    Hi Joyce

    I'm in exact same position...my levels are only 328 though. Met consultant last week who said they'll be in touch. I was diagnosed over 3 months ago. And if I choose to get it done at my GP it is €60 each time. I'm tired more than anything else. But hoping I don't need to wait too much longer.hope you hear soon

    • joyce1959
      joyce1959 gina38206

      Posted

      Hi Gina

      It's crazy isn't it! You're obviously not in the uk? Pleased your symptoms are only tiredness Hun. Hope we both hear soon!

    • gina38206
      gina38206 joyce1959

      Posted

      Hi Joyce

      I'm in Ireland so have been told that it might take a while. Fingers crossed. Nervous about getting it. Are you having many symptoms?

    • joyce1959
      joyce1959 gina38206

      Posted

      Hi Gina

      I'm nervous too! Yes, loads of symptoms abdominal pain, depression anxiety palpitations, awful fatigue, migraine. The list goes on, I haven't worked for a year. Hey ho, onwards and upwards! Can only get better I hope. Waiting for multiple scans.

    • gina38206
      gina38206 joyce1959

      Posted

      Wow sounds exausting.hope I get it sorted before things get worse. How long ago did you get tested? I haven't been sent for any other tests/scans...just bloods done and then consultant and waiting list. I understood that once vs starts that things improve pretty fast, but alot of people seem to have side effects from it, hope that isn't the case

    • joyce1959
      joyce1959 gina38206

      Posted

      Hi Gina

      I was diagnosed in June and waited til August to see the consultant. Meantime my GP did the genetic test and sent that to our local centre for life genetic lab. It takes around four weeks, I requested it so I had it in time for my consultant appointment. I have two mutations of C282Y, meaning both my parents carried the gene. The consultant has ordered the tests due to my symptoms.

  • terry34297
    terry34297 joyce1959

    Posted

    Yes its really frustrating waiting. I was in the same position, but finally got the ball rolling Mid August and been having weekly vs ever since. Fingers crossed you hear something soon.
    • joyce1959
      joyce1959 terry34297

      Posted

      Hi Terry

      Thank you for your reply. Have you coped ok having weekly vs? I'm anxious of how I'm going to feel....I'm anxious period!

    • terry34297
      terry34297 joyce1959

      Posted

      Hi Joyce.

      Yes I was also anxious whilst waiting, but there's some great people on here (hello Mike and Phil) who give great advise and that helped tremendously. My body is still adjusting to weekly vs. I am always tired, but for 2/3 days after vs my body is a complete wreck. The headaches get worse, I get minor pains in my chest and for some reason hallucinate when I manage to get any sleep, but then my body recovers and I then have 3 relitivly pain free days. I started taking omega 3 cod liver oil a few weeks ago and my joints are definitely feeling better. I also take turemic capsules and drink milk with meals as that helps absorb the iron. My blood was too thick and was causing problems at vs... but I have started taking aspirin (naughty so don't follow my advice without consulting your gp) but it has helped with vs and the blood is flowing so much better. My liver and spleen are enlarged at the moment so totally avoiding alcohol. I had an MRI on brain last week because of my head pain, and still waiting to have heart checked over. Oh the joys of having HH. This is the only place I can have a rant so never feel afraid to post anything as everyone on here is really supportive.

    • joyce1959
      joyce1959 terry34297

      Posted

      Thanks for that Terry! I hope I don't feel worse after vs, can't imagine feeling any worse than I do.

    • terry34297
      terry34297 joyce1959

      Posted

      Things will improve so hold on in there. I can't believe I have actually been out gardening for 3 hours!! I couldn't of done that a couple of months ago but saying that I am sitting here in agony, but I'm determined to get myself better and will fight through the pain. If only I could have a few beers to take the edge off, but I'm not giving in!!

    • joyce1959
      joyce1959 terry34297

      Posted

      I know I would kill for a bottle of wine! I did have a little sneaky beer last night as my liver function test a few weeks ago was fine. I am however waiting for my liver scan. 3 hours gardening 👍 That's great!

  • GillianA
    GillianA joyce1959

    Posted

    Is there any chance you could qualify as a blood donor?  If you do qualify, donating blood would at least get you started on de-ironing and your blood would be put to good use.   (My apologies if this appears twice - it seemed to just disappear after the first time I typed it in)
    • joyce1959
      joyce1959 GillianA

      Posted

      Hi Gillian

      I am hoping to eventually be a blood sonar, but I'm taking propranolol at the moment for the palpitations.

    • GillianA
      GillianA joyce1959

      Posted

      Have you had a cardiogram that shows what the exact cause of the palpitations is?  Atrial fibrillation or something else?  I ask because too much iron in the heart can lead to atrial fibrillation, as well as other kinds of irregular heartbeat.  If it turns out that you do have atrial fibrillation, it might be a good idea to ask your family doc or cardiologist about the pros and cons of anticogulation to prevent stroke.

       

    • joyce1959
      joyce1959 GillianA

      Posted

      Hi Gillian I have had an echo in the past, but I am waiting for another. I'm a nurse so understand the implications, luckily it isn't atrial fibrillation, more like ectopic beats, most people's palpitations settle with vs, so hopefully mine will too. Thank you, take care.

    • GillianA
      GillianA joyce1959

      Posted

      Hi Joyce, I'm glad to hear that!  Atrial fib is on my radar a bit more than usual recently because a family member had asymptomatic paroxysmal atrial fibrillation that wasn't diagnosed until it caused him to have a stroke.  (He doesn't have any sort of iron overload.)  Now that you mention it, I think I have noticed fewer palpitations since I've got my ferritin down to target - fingers crossed that your palpitations will settle down too!

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