Fast ferritin reduction...??? Opinions needed...dare I hope?

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Iron panel blood tests revealed high ferritin.

Subsequent tests revealed:

Ferritin 960 TS 75% no inflamation

Ferritin 975TS 65 no inflamation

Ferritin 1010

Liver MRI showed excess iron consistent with HH...other organs fine.

I am totally asymptomatic (70 yr old female 115lbs)

Genetic bood tests confirmed two copies of C282Y.

Prescribed biweekly phlebotomy.

I have had only 4 phlebotomies .

Recent Blood test Indicates Ferritin...529?. i am ecstatic...but skeptical that

this is too good to be true...opinions please...Please.

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1 Reply

  • Posted

    Hi jax, speaking from the experience of 21 years diagnosed with homozygous C282Y and 9 years severe symptoms before that, plus husband homozygous H63D, and son compound heterozygous C282Y/H63D, plus reading and talking to many researchers, there is no textbook results for vx results.

    Some experience a fast fall in the beginning from a high level, then slow down considerably when level gets lower, and some experiences are quite different.

    If you have no inflammation at all, that is probably making it easier for you as you are not loading almost as much as you are eliminating. Frequency of vx is generally slowed down after a couple of weeks of bi-weekly, to weekly, then 2 weekly, monthly, and so on.

    I note that your TS% is reducing well too. This contributes to your fast reduction. If the TS% stays high, then it is more hard going.

    If elimination slows down, you will just have to be patient with it. Do not eliminate red meat and greens or your Hb will reduce and make it difficult for you to continue having vx.

    Everyone has a different experience, which can chop and change during the process of de-ironing. You can only just go with the 'flow'. 😃

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