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Laid back gastro

Posted , 2 users are following.

eric89660
eric89660

I first saw the gatro 3.5 months ago.I explained that my rum ferritin was over 1,000 and I wanted phlebotomy. He said I was drinking to much and it would go down i I didn't have any for 3 months.My liver enzymes were 41 3 weeks ago but have rebounded to 74 at my latest bloods.My GP now tells me that my transferrin saturation is 87% but my gastro has declined to bring forward my appontment from early September.Am I missing something? My first bloods we done 7 months ago and I'm yet to have a HH test. I want to be treated ASAP.

1 like, 4 replies

4 Replies

  • eric89660
    eric89660

    Posted

    Should read "serum ferritin".

  • ruth51315
    ruth51315 eric89660

    Posted

    Hi Eric,

    My serum ferritin and saturation were lower than yours but my gastro stated categorically that I did not have HH because if I did my skin would be bronze.  I pointed out that I had just about every symptom of HH but  she still wouldn't test me.  Feeling like c**p, I managed to find a gene test on-line privately which you can order yourself, without a doctor's referral.  It cost me £195 but it proved that I DID have HH.  The test consists of 4 cheek swabs which you wipe around the inside of your cheeks and post them back to the lab for analysis.  Depending upon how desperate you are and if you can afford the £195, the test came from Canada.  Best £195 I ever spent in my opinion.  It was great to prove my gastro doctor wrong who up until I waved the test result under her nose, had just sounded like a cracked record, stating over and over again. "your skin would be bronze."  I don't think my doc knew the first thing about HH and all she remembered from med school was the bronze skin thing.

    Sometimes for peace of mind, we have to take matters into our own hands.

    Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

    • eric89660
      eric89660 ruth51315

      Posted

      Thanks for that Ruth.I have told my GP that he can do the HH test at his surgery and I am having it on Wednesday.He is getting back in touch with the gastro and hopes he will see me within 2 weeks.  
    • ruth51315
      ruth51315 eric89660

      Posted

      That's great.  Hopefully now you'll get somewhere.

      Take care.

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