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Question on the frequency of phlebotomies.

Posted , 10 users are following.

abookreader
abookreader

Hello,

I have the homozygous c282y gene and I have HH. I've had 3 phlebs in since June 20th of this year - about once every 8 weeks per my doctors orders. My iron level has come down from 218 to 164 (the healthy range Ive been told is 50-150) so I am close there. Iron saturation is 53% so I'm almost in range on that as well. Only 3% off from normal.

My ferritin however was 597 and rose to 602 as of September this year. 

I saw a Hematologist today and she reccomended that I change to weekly phlebs and that what I am doing now won't be able to solve the problem (high ferritin levels with phlebs done  every 8 weeks won't get the number into range.) The doctor wants me at 50 and then we start maintenance. 

I'm not crazy about needles or blood but I am willing to do what it takes. All of my 3 phlebs so far I'm ok during - just some anxiety when its happening but not much more. Afterwards sometimes I have felt incredible the days following, sometimes I feel blah but it gets better.

For those of you who have done weekly phlebs - can you tell me your experience? How did you feel during? How did your weekly recovery go? What kind of diet did you eat? Anything you can share that can help me get a better understanding of what the doctor is looking for will be helpful. Weekly phlebs sounds like a lot of blood to give in short periods of time so I need more information on what to expect physically mentally emotionally.

Thank you. 

1 like, 30 replies

30 Replies

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  • Barb1028
    Barb1028 abookreader

    Posted

    I tried weekly, but I was exhausted all the time, I now go every two weeks and that is much better. Try weekly and see how it goes, you my be able to tolerate.
  • chorleyboy
    chorleyboy abookreader

    Posted

    Hi, my situation is that I have a high ferritin level, 2000 or so, and because the level would not show steady improvement whilst I was giving blood fortnightly, for some 15 months,, I decided, to just give blood once a month.  However, the Consultant wrote to me almost straight away and said, no that won't work, you  have to give blood weekly and I have been doing so for the last 12 weeks and this week, my ferritin level increased by 300+ so I just wonder when, and if, it is ever going to show a steady reduction and, no-one has answered the question.   Giving 500ml of blood weekly, what affect does that have on the body generally.   My diet is very good, so say the heath professionals, avoiding all the food and drinks that are not good for people with HH but that doesn't seem to be doing the trick either.    Weeklty blood lets can be draining but you just have to persevere and hope that things improve and watch your diet, no greens, shelfish and there is list of avoidable foods online and the Haeomchromatosis Society are excellent if you have a query, you can ask them by email and they will reply swiftly.   Regards Glyn

    • philx
      philx chorleyboy

      Posted

      Hi Glyn

      I'm really sorry for your plight it must be soul destroying to be

      Going up with levels more that some people are asking questions

      about,but as you say we have to take things as they come,

      Very best wishes for your future treatments and I hope they find

      An answer somewhere

      Cheers philx

    • chorleyboy
      chorleyboy philx

      Posted

      Good Morning, thanks for your comments, I do appreciate them.    Sorry if I sound a bit low but 12 weeks ago when the Consultant says, you will see a difference giving blood weekly, although not in the first couple of weeks, but in my case, the ferritin level is still going up after 12 bloodlets and I am still waiting for an appointment to see the Consultant, having asked months ago to speak with him.     I have never actually had a consultation with  him and I think it is about time he answered some of my questions, if indeed he can.   It seems not enough is known about Haemochromatosis.  I emailed the Haemochromatosis Society and they were very swift in their reply and agreed that my Hb, my transferrin sats % and ferritin levels were all too high and further investigation is needed, but as I say, I am still waiting for an appointment.   Every week I ask but no luck so far   I shall keep trying, best regards Glyn
    • philx
      philx chorleyboy

      Posted

      Hi Glyn

      If you are under the hospital, and having venesections there I cannot

      Understand, why you don't have regular reviews, especially with the

      Way your levels are,hospitals must differ.

      At queen Elizabeth hospital Birmingham (England)

      My initial appointment was 1.7.16 follow up appointment 14.10.16

      And another one due 115.1.17 ,there is something drastically wrong

      With you treatment, be more insistant demand to see your consultant

      Don't take no for an answer.

      Cheers Phil x

    • chorleyboy
      chorleyboy philx

      Posted

      Hi, thanks for your message.    Believe me I try every week to get an appointment with the Consultant but to no avail.   The nurses are lovely and they do understand that I should have a review after all this time, first diagnosis beginning of April 2015 with phlebotomy straight away on a fortnightly basis.   But, then, I was fed up with the level going up and down and showing no stability, that I left it for one month and suddenly, I got a letter saying, I need to give blood weekly and I have being doing so for the last twelve weeks, but as I say, my ferritin level was up again 300+ and I dont seem to be getting anywhere.    I will endeavour, yet again, next Wednesday to arrange to see a Consultant and short of chaining myself to the bed, I am not hopeful.     But I will try.   Best regards Glyn
    • sheryl37154
      sheryl37154 chorleyboy

      Posted

      I have found that hospital systems get annoyed when the patients are non-compliant.  If you are not interested, why should they be.  My son is one of those not always compliant.

      Do they tell you why they cannot give you an appointment?  Surely, even on a waiting list?  Then you can phone and annoy them every now and then to see if you can fit in earlier.

      What medical level is your Consultant, i.e. is he/she a haemotologist?

      What is your gp doing about it?  Also, what is the dr treating your inflamed eosophagus doing for you?  This may be the cause of your high ferritin.  I think I read that medications like Nexium can increase ferritin levels too.  Check it out and go armed with information.

       

    • chorleyboy
      chorleyboy sheryl37154

      Posted

      Hi Sheryl, thank you for your message.    At every blood let I ask to see or arrange an appointment with the Consultant, who is a Consultant Haemotologist.   I am always told he is busy on the wards but at the first opporunity the nurse will mention my request.     In April 2015 my ferritin level was 5265 and I was put on fortnightly phlebs.   Because I had a tumour on the liver, I had a liver ablation carried out at St James's Leeds. and still continuing with the phlebs.  My ferritin level has never been below 2000 and is always up and down.  Last Wednesday it went up 300+ and when I go this Wednesday I will ask again to see the Consultant.   I did try telephoning the Consultant's secretary who had my details up on screen and said, yes, I will speak to the Consultant, but never heard anything more.  This was four months ago, and I then decided to go monthly to give blood but soon received a letter from the Consultant saying, no, that won't work, you must give blood weekly.  So, for the last 12 weeks I have been doing that but there is no gradual reduction in the ferritin level.    The esophagus I thought may be causing a high ferritin level but no-one has said anything other than take the tablets, omeprazole, which at my last GP visit, I explained that these tablets can cause possible liver damage and so he changed them to esomazole, and after reading the pamphlet inside, it said, possible kidney damage.   I have a small lesion on my windpipe and was told that unless it increases in size or changes direction, then it would be left for now.   Back at hospital this Wednesday giving blood and I will try again to see the Consultant.     If and when I do, I have a list of questions.    Regards Glyn

    • philx
      philx chorleyboy

      Posted

      Hi Glyn

      Don't you think it's about time you enlisted outside help????

      Contact your local pm or even the newspapers, it's your right to have

      regular consultations with a consultant hemotologist,yours is a serious

      Predicament and they are playing with your life???

      Please don't delay with this,

      Cheers philx

    • philx
      philx

      Posted

      Sorry Glyn

      Should be MP member of parliament, they appear to be giving you

      No option, I think if you consultant gets a letter from your MP

      You will very quickly get an appointment, it reflects badly not only

      On the consultant but also the hospital.

      Also maybe worth talking to pals at the hospital that is there job

      To liaise between patients and hospital protocol.

      Cheers philx

    • chorleyboy
      chorleyboy philx

      Posted

      Hi, I shall go on Wednesday and give another pint of blood and get the result of the Hb, TS% and Ferritin levels and find out what has been done about an apppointment with the Consultant.   And, I shall wait till someone can answer my questions because this cannot go on without a serious review of my condition.  I shall keeping posting.... regards Glyn
    • sheryl37154
      sheryl37154 chorleyboy

      Posted

      Apart from Philx suggestion, or in accord with it, is there another haemotologist at the hospital?  Ask to see another one, and say, as this one is not looking after me properly.

      You are not likely to get to see one on demand when you turn up for your venesection.  However, ask them for an appointment in advance while you are standing there and not leaving until you know the time/date.

      And Glyn, eat your greens, they are good for you - they are NOT high in iron.  Some other vegetables which you are probably eating all the time have much higher levels of iron.  smile

    • chorleyboy
      chorleyboy sheryl37154

      Posted

      Thanks for the comments Sheryl.    I shall post on Wednesday after I return from the hospital and hopefully I will make some headway in getting a review soon.    regards Glyn
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