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Testing Times

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peekay
peekay

Hi folks smileTo cut a long story short as I'm sure it's similar to lots already said. I had a dose of the flu early Nov 2016 and never quite shook it off(constant lethargy, sleeping for an army). In Feb I took myself to the doctor to find out why and tests showed a ferretin level of 2,631. This has since been diagnosed via a genetic test as caused by haemochromatosis. Does anyone know how long it is roughly before the phlebotomies begin? Is it something the docs treat as urgent or is it appointments that get pushed down the list? I'm in West Scotland. I would ask my doc but she's disappeared on holiday for 3 weeks and I'm not overly enamoured with the stand-in.

1 like, 18 replies

18 Replies

  • marcia9999
    marcia9999 peekay

    Posted

    Hiya. I was diagnosed in December at rheumatology and a referral sent to gastroenterology. I only got my appointment through yesterday and its for mid May. I'm in Glasgow. I felt the last couple of months ive been treading water and just finding info for myself on different websites. I also have terrible fatigue and joint pain (I have fibromyalgia and psoriatic arthritis) but nothing seems to help with the pain. Good luck with your journey

    • peekay
      peekay marcia9999

      Posted

      Thanks for replying Marcia. I'm in Glasgow too so as we're in the same catchment area 5mnths is probably a reasonable guesstimate for my treatment to start. Sounds like you're having a worse time of it than myself though, I've just got a constant fatigue and foggy head.

    • marcia9999
      marcia9999 peekay

      Posted

      Hi. I think the fatigue and foggy head are the worst parts to deal with as it's an absolute drain on you. I think there was a delay due to Christmas with mine so a I think the referral was done January so approx 12 weeks for letter with appointment

    • lynnsk1
      lynnsk1 peekay

      Posted

      Also forgot to mention you should already start by not eating or atleast reducing the amount of red meats, alcohol and raw fish to your diet , drink tea & coffee and milk with each meal as all help inhibit iron absorbtion. Do NOT eat Vitamin C rich foods with iron rich foods as this helps absorbtion,  so a definate NONO. Its all about working out sensible food combinations. The Hemochromatosis cookbook is educational reading and informative about food albeit american. I also live in UK but am in Hertfordshire.

    • lynnsk1
      lynnsk1 carmel70893

      Posted

      carmel70893 You can get it on the internet, Amazon sell it  The Hemochromatosis Cookbook: recipes for reducing iron in your diet. It costs approx £8-10 It has some really good informative information in it and explains about Heme iron and non-heme iron etc etc. even gives you content. I tried putting a link/photo on here but it wont except .

      I also paid £25. and joined the Hemochromatosis Society ( based in Rugby for the 

      UK) as they give you info, bracelt etc. and also a nice little record booklet for your venasections and test results.

      Hope that is of some help to you.

  • lynnsk1
    lynnsk1 peekay

    Posted

    Hi Peekay, My advice would be to get your phlebotomies underway as soon as possible , it is the quickist/only way to rid iron from your body and reduce your level unless you have to be put on chulating pills .

    I sat in the consultants room till he made the call to the blood unit as I would have had to wait to go down the appointmnets list which would have been another 3 weeks. Jump on them now...

  • peekay
    peekay

    Posted

    Thanks Ladies.

    I'm already pretty much there with the diet bit. I don't eat a lot of red meat, barely drink at all and haven't eaten seafood of any type for 30years(Mum used to force those god-awful boil-in-the-bag cod things down my neck, put me off seafood entirely) So other than a bit of minor tinkering I can't see any great change in diet. Just avoidance of anything 'fortified' I suppose.

    As for getting the bloods started, I'll leave that a few weeks until my own doc is back from holiday. Is it actual appointments or is it like donating blood where I can drop-in at a time that suits me? I'm going back to uni next year(biomedical science ironically enough) and a drop-in would fit around that better.

    • lynnsk1
      lynnsk1 peekay

      Posted

      Depends on what your consultant arranges for you but I dont think you can just drop in like a blood donor because for a start you have to wait till your count is down to 50  otherwise they dont use your bloods and also you have to get permisssion from blood banks. However youll need to discuss your circumstances as you will be at Uni next year but personally if your levels are high you need to start venasection straight away not wait weeks for an appointment, its the referral you need to a Heamotologist now if you havent seen one coz that might take weeks too. i certainly would be striking whilst the iron is hot...Excuse the punn....
    • peekay
      peekay lynnsk1

      Posted

      Hi lynn, 'plogies for taking so long. Yeah, the last time I saw my GP she said she was making an appointment for haemotology. I was just wondering how long they took to get into gear i.e. do I get bumped up the list or down?

      I'll leave it another week-or-so and find out if my usual doc is back from holidays to get more info from her. She's maybe got weans and has taken Easter off, the timings right anyway.

  • carolanne17
    carolanne17 peekay

    Posted

    Hello 😄 I'm in Glasgow and waited 7 months for an appt then had bloods taken again and a abdominal scan to check liver etc. It then took 3 months to get results and the doc I saw at the clinic was a locum from England and my results had to be sent to her first to then come back to Scotland for a Letter to be typed. Total nonsense. I'm 44 and although my transferrin was raised my ferritin wasn't high enough to start phlebotomy and liver is good. Just to attend in 6 months again.

  • anne79755
    anne79755 peekay

    Posted

    Wow! ! That ferritin level is super high and very destructive. Start phlebotomy treatments right away!. I now drink an electrolyte drink, mixed with tea and sugar prior to phlebotomy day, and salty chicken broth while there to prevent getting dehydrated. I started weekly blood draw, at the blood bank, in the U.S. in October and cut out my wine with dinner.stopped frying eggs on iron pans. Now on monthly maintenance. Jump up and down and get started right away! I also take supplements to help inflammation. Seems to be working
  • jenn60055
    jenn60055 peekay

    Posted

    Hi! I also have hemochromatosis! You desperately need a hematologist! Please don't put it off !

  • peekay
    peekay

    Posted

    Thanks for all replies folks smile I got the appointments the other day and the weekly venesections start on 15/06/17. So that's <10 weeks from diagnosis to treatment beginning which isn't too bad. Gastro has also picked up a slightly enlarged liver but Doc says this is to be expected and should go back to normal when my levels start to go down.

     

    • marcia9999
      marcia9999 peekay

      Posted

      That's great you have been seen. Was that at gastro? I have my appointment tomorrow st Stobhill 😊

    • peekay
      peekay marcia9999

      Posted

      Hi Marcia, I'm at the Vicky.The venesections don't appear to be getting done in any 'speciality' unit as such, the letter just says "Clinic P". I suspect as it's just a simple blood drain it's effectively something a student nurse could do in the carpark. No point in tying up a specialists time with the procedure itself, they'll just keep an eye on the numbers. 

    • lynnsk1
      lynnsk1 peekay

      Posted

      I would just like to add the fact that your liver is enlarged. You need to ask the Gastro interologist to get you a fibroscan to see how enlarged your liver is. If you have had this problem HH and been undiagnosed for years then you may want to have it checked for storage (%TS) make sure it hasn't actually developed into anything else. Better to be safe than sorry. Mine was undetected and I have cirrhosis which if caught early enough can at least be halted with venesection to lower your Ferritin levels.

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