I am confused about interpreting my 4 year old's porphyrin results.
We have been chelating (DMSA + ALA) since September last year and
have had his porphyrins checked 3 times - a baseline figure for
August 2000 and 2 subsequent tests.
Table 1 shows one way of presenting the results.
Aug 2000 Nov 2000 Mar 2001 Ref range
Creatinine
(mmol/l) 4.7 L 2.0 L 11.2 5-20
Total porphyrins
(nmol/l) 184 148 502 High 0-300
Porph/creat 39 H 74 H 45 High 0-35
Uroporphyrin
(nmol/l) 22 18 40 0-40
Coproporphyrin
(nmol/l) 162 H 127 452 High 0-150
…copro I
(nmol/l) 24 16 70 0-105
…copro III
(nmol/l) 138 111 387 High 0-240
L = Low H = High reference ranges for adults
The lab commented that urine collections and results in August and
November 2000 were not reliable because the creatinine levels were
too low - ie below the (adult?) reference range. Just recently, for
the March 2001 results, I purposely collected urine first thing in
the morning to try and get the creatinine level up to "normal".
They were prepared this time to confirm that the liver is under some
disturbance.
I presume that a toxic individual will show elevated porphyrins both
before and while chelating. This table seems to show some toxicity
before chelating (August 2000) – slightly elevated coproporhyrins -
and then a reduction in toxicity (in November 2000) and then a major
increase in coprporphyrins 6 months into the chelation (March 2001) –
well over the upper limit of the reference range.
Is this normal with chelation? I take it that some increase in
coproporhyrins to levels above normal is to be expected as the metals
are sequested from the brain and elsewhere and transported to the
liver for excretion. I presume the trick is to ensure that the liver
is not being over-taxed. Do these porphyrin levels indicate that the
liver is being over-taxed? Can porphyrin levels provide an
indication of the how well the chelation is going and whether it
should be modified – too high an increase implies that less chelation
is needed and vice-versa?
Table 2 shows another way of presenting the same data but which
suggests a different interpretation. This table calculates
porphyrins per unit of creatinine using the data from Table 1.
Aug 2000 Nov 2000 Mar 2001 Ref
range
Uroporphyrin
(umol/mol creatinine) 4.7 8.9 3.6 0-5.7
Coproporphyrin
(umol/mol creatinine 34.5 63.5 High 40.4 0-46
…copro I
(umol/mol creatinine 5.1 8.1 6.3 0-10.3
…copro III
(umol/mol creatinine 29.4 55.5 High 34.6 0-35.7
The reference ranges are drawn from the article referred to by Andy
in the "Files" section and are for 4 year olds.
Using this methodology shows a baseline coproporhyrin (August 2000)
measure which is above average but nor above the reference range and
then a major increase in coproporhryins (implying greater toxicity
while chelating in November 2000) and then a reduction to a level
below the upper limit in March 2001 but still above the baseline
figure.
I don't know which interpretation to rely upon nor whether the
chelation therapy is going OK.
Can Andy or anyone who has experience with porphyrin tests while
chelating help with this?
Remember that it is very easy for sample handling errors to lead to
lower numbers than are really there.
BTW, which lab did you have the test done at?
Andy
--- In Autism-Mercury@y..., john.gilfillan@a... wrote:
> I am confused about interpreting my 4 year old's porphyrin results.
> We have been chelating (DMSA + ALA) since September last year and
> have had his porphyrins checked 3 times - a baseline figure for
> August 2000 and 2 subsequent tests.
>
> Table 1 shows one way of presenting the results.
>
> Aug 2000 Nov 2000 Mar 2001 Ref range
> Creatinine
> (mmol/l) 4.7 L 2.0 L 11.2 5-20
> Total porphyrins
> (nmol/l) 184 148 502 High 0-300
> Porph/creat 39 H 74 H 45 High 0-35
> Uroporphyrin
> (nmol/l) 22 18 40 0-40
> Coproporphyrin
> (nmol/l) 162 H 127 452 High 0-150
> …copro I
> (nmol/l) 24 16 70 0-105
> …copro III
> (nmol/l) 138 111 387 High 0-240
>
> L = Low H = High reference ranges for adults
>
>
> The lab commented that urine collections and results in August and
> November 2000 were not reliable because the creatinine levels were
> too low - ie below the (adult?) reference range. Just recently, for
> the March 2001 results, I purposely collected urine first thing in
> the morning to try and get the creatinine level up to "normal".
> They were prepared this time to confirm that the liver is under some
> disturbance.
>
> I presume that a toxic individual will show elevated porphyrins both
> before and while chelating. This table seems to show some toxicity
> before chelating (August 2000) – slightly elevated coproporhyrins -
> and then a reduction in toxicity (in November 2000) and then a major
> increase in coprporphyrins 6 months into the chelation (March 2001) –
> well over the upper limit of the reference range.
>
> Is this normal with chelation? I take it that some increase in
> coproporhyrins to levels above normal is to be expected as the metals
> are sequested from the brain and elsewhere and transported to the
> liver for excretion. I presume the trick is to ensure that the liver
> is not being over-taxed. Do these porphyrin levels indicate that the
> liver is being over-taxed? Can porphyrin levels provide an
> indication of the how well the chelation is going and whether it
> should be modified – too high an increase implies that less chelation
> is needed and vice-versa?
>
> Table 2 shows another way of presenting the same data but which
> suggests a different interpretation. This table calculates
> porphyrins per unit of creatinine using the data from Table 1.
>
> Aug 2000 Nov 2000 Mar 2001 Ref
> range
> Uroporphyrin
> (umol/mol creatinine) 4.7 8.9 3.6 0-5.7
> Coproporphyrin
> (umol/mol creatinine 34.5 63.5 High 40.4 0-46
> …copro I
> (umol/mol creatinine 5.1 8.1 6.3 0-10.3
> …copro III
> (umol/mol creatinine 29.4 55.5 High 34.6 0-35.7
>
> The reference ranges are drawn from the article referred to by Andy
> in the "Files" section and are for 4 year olds.
>
> Using this methodology shows a baseline coproporhyrin (August 2000)
> measure which is above average but nor above the reference range and
> then a major increase in coproporhryins (implying greater toxicity
> while chelating in November 2000) and then a reduction to a level
> below the upper limit in March 2001 but still above the baseline
> figure.
>
> I don't know which interpretation to rely upon nor whether the
> chelation therapy is going OK.
>
> Can Andy or anyone who has experience with porphyrin tests while
> chelating help with this?
The lab is a pathology lab operating within the Royal Melbourne
Hospital which is in Melbourne, Australia. This is the biggest
hospital in the city of Melbourne. The test is recognised by the
medical authorities and is covered by the Government insurer in
Australia (Medicare).
I undertand that they mainly test for porphyria in adults and have
little knowlege of toxicology and porphyrins. I have sent them
articles from the toxicology literature.
Can I ask you once again whether an increase in porphyrins is to be
expected from chelation and that an increase does not necessarily
mean you are damaging the liver. My understanding is that increases
would need to be very high to cause one to stop chelation or lower
the chelating doses.
--- In Autism-Mercury@y..., AndyCutler@a... wrote:
> Use table 2.
>
> Remember that it is very easy for sample handling errors to lead to
> lower numbers than are really there.
>
> BTW, which lab did you have the test done at?
>
> Andy
>
> --- In Autism-Mercury@y..., john.gilfillan@a... wrote:
> > I am confused about interpreting my 4 year old's porphyrin
results.
> > We have been chelating (DMSA + ALA) since September last year and
> > have had his porphyrins checked 3 times - a baseline figure for
> > August 2000 and 2 subsequent tests.
> >
> > Table 1 shows one way of presenting the results.
> >
> > Aug 2000 Nov 2000 Mar 2001 Ref range
> > Creatinine
> > (mmol/l) 4.7 L 2.0 L 11.2 5-20
> > Total porphyrins
> > (nmol/l) 184 148 502 High 0-300
> > Porph/creat 39 H 74 H 45 High 0-35
> > Uroporphyrin
> > (nmol/l) 22 18 40 0-40
> > Coproporphyrin
> > (nmol/l) 162 H 127 452 High 0-150
> > …copro I
> > (nmol/l) 24 16 70 0-105
> > …copro III
> > (nmol/l) 138 111 387 High 0-240
> >
> > L = Low H = High reference ranges for adults
> >
> >
> > The lab commented that urine collections and results in August
and
> > November 2000 were not reliable because the creatinine levels
were
> > too low - ie below the (adult?) reference range. Just recently,
for
> > the March 2001 results, I purposely collected urine first thing
in
> > the morning to try and get the creatinine level up to "normal".
> > They were prepared this time to confirm that the liver is under
some
> > disturbance.
> >
> > I presume that a toxic individual will show elevated porphyrins
both
> > before and while chelating. This table seems to show some
toxicity
> > before chelating (August 2000) – slightly elevated
coproporhyrins -
> > and then a reduction in toxicity (in November 2000) and then a
major
> > increase in coprporphyrins 6 months into the chelation (March
2001) –
> > well over the upper limit of the reference range.
> >
> > Is this normal with chelation? I take it that some increase in
> > coproporhyrins to levels above normal is to be expected as the
metals
> > are sequested from the brain and elsewhere and transported to the
> > liver for excretion. I presume the trick is to ensure that the
liver
> > is not being over-taxed. Do these porphyrin levels indicate that
the
> > liver is being over-taxed? Can porphyrin levels provide an
> > indication of the how well the chelation is going and whether it
> > should be modified – too high an increase implies that less
chelation
> > is needed and vice-versa?
> >
> > Table 2 shows another way of presenting the same data but which
> > suggests a different interpretation. This table calculates
> > porphyrins per unit of creatinine using the data from Table 1.
> >
> > Aug 2000 Nov 2000 Mar 2001 Ref
> > range
> > Uroporphyrin
> > (umol/mol creatinine) 4.7 8.9 3.6
0-5.7
> > Coproporphyrin
> > (umol/mol creatinine 34.5 63.5 High 40.4
0-46
> > …copro I
> > (umol/mol creatinine 5.1 8.1 6.3
0-10.3
> > …copro III
> > (umol/mol creatinine 29.4 55.5 High 34.6
0-35.7
> >
> > The reference ranges are drawn from the article referred to by
Andy
> > in the "Files" section and are for 4 year olds.
> >
> > Using this methodology shows a baseline coproporhyrin (August
2000)
> > measure which is above average but nor above the reference range
and
> > then a major increase in coproporhryins (implying greater
toxicity
> > while chelating in November 2000) and then a reduction to a level
> > below the upper limit in March 2001 but still above the baseline
> > figure.
> >
> > I don't know which interpretation to rely upon nor whether the
> > chelation therapy is going OK.
> >
> > Can Andy or anyone who has experience with porphyrin tests while
> > chelating help with this?