This Is MS Multiple Sclerosis Knowledge & Support Community

any copper updates?

on the temp front - possibly of interest, from last month: http://www.thisisms.com/forum/natural-a ... 28918.html

Hello again.

Rebif side effect fever is much more manageable now. Having some minor problems with acid reflux which is nothing new for me. I still suspect a small infection. Knocking wood.

I had new blood serum tests today. Very surprising results. Comparison is with 20 days ago results. * is out of range.

New diet absolutely works.

Total cholesterol *256 mg/dL (Past *292 mg/dL, 36 mg/dL decrease in 20 days is very motivating)
HDL 47 mg/dL
LDL *162 mg/dL (Past *179 mg/dL)
Triglycerides *235 mg/dL

Sodium 143 mmol/L (Past 139 mmol/L)
Potassium 4.07 mmol/L (Past 4.1 mmol/L)
Calcium 9.90 mg/dL (Past 9.50 mg/dL, thinking about vitamin K2 supplement because level is high)
Phosphor 3 mg/dL (Past *1.95 mg/dL)
Vitamin B12 711 pg/mL (Past 540 pg/mL, reducing B12 supplement to 1000 mcg every 4 days, thinking about other vitamin B tests to adjust vitamin B complex supplement dosage)
Copper, Zinc, Magnesium testing on the way, curious about all

Iron Serum 123 µg/dL (Past *46 µg/dL)
TIBC 271 µg/dL
UIBC 148 µg/dL,
Saturation index %48

Now thank you so much jimmylegs for recommending Ferritin test. The result is shocking : *2000 ng/mL. Tomorrow I will go to doctor about that as I know it is dangerously high. Iron overload maybe?

Uric acid 5.5 mg/dL
CRP 0.95 mg/dL (Past 0.3 mg/dL)

Complete Blood Count is almost all within limits but weird when I compare previous test.

Monocyte *%10.70 (Past *%1.48, range %3-%8, low became high)
Lymphocyte *%47.90 (Past *%9.5, range %20-%47, low became high)
Neutrophil *%39.20 (Past *%88.3, range %40-72, high became low)

I see monitoring serum levels is absolutely a must for me and supplements are no joke. All this "Becoming optimal journey" is not so easy with my bad past but I do great progress, still learning...

oh. my. gosh.

i can't even believe serum ferritin 2000 ng/ml. are you certain that's not some kind of units misprint and it's 200 something??
either way really, um YES i would say overload (or at least excess). i am not even a fan of 200 ng/ml, preferring to keep things in the 80-100 neighbourhood.
if memory serves, the body works to sequester iron when fighting infection; let's wish yours luck with that :S

i know very little about various causes of high ferritin but did find this: http://www.medscape.com/viewarticle/811743
i am more used to reading about the anemia of chronic disease than excess ferritin associated with inflammation. although not in any way a diagnostician, my mind did leap to 'hemochromatosis'. i've had neighbours with the condition before and understand that phlebotomy is a regular treatment in those cases. there have been many related discussions here at TiMS so i am sure a forum search will result in a variety of interesting posts to review.

otherwise, glad new diet is helping

consider nudging serum uric acid down below 300 umol/l (you are currently at 327 umol/l which = 5.5 mg/dl).

looking forward to serum copper, zinc and magnesium results! i think we can expect issues, with ferritin so out of whack and uric acid on the high side.

They did the test twice. Same results. It is indeed 2000 ng/mL. Reference is 15-200. One of my doctors said there might be a test error and did the test somewhere else to confirm. 2000 ng/mL ferritin must result in some symptoms but I am symptom free. Blood donation (if I can) or phlebotomy. Waiting tomorrow for more tests and doctor advice. I hope it is just iron overload.

Uric acid lowering seems easy with diet, ferritin is not. Side effects with chelation drugs , phlebotomy may take months, any other ideas? Any natural treatment?

Feeling good ;)

hi i think you need to figure out the mechanism that's driving the ferritin high. yes, zinc and iron compete in an ordinary system but i think we're safe to say yours is not, not at present anyway. i think i would consider zinc a potential iron chelation drug but some reading would be required to see if it's been used specifically in the context of iron overload. giving blood for phlebotomy is probably best for first steps, plus testing to determine if you are indeed dealing with hemochromatosis. maybe boosting zinc can help keep things in line long term.

re overload x infection: http://www.sciencedirect.com/science/ar ... 1207000811

chemical iron chelation treatment depletes zinc:

Zinc concentration in patients with iron overload receiving oral iron chelator 1,2-dimethyl-3-hydroxypyrid-4-one or desferrioxamine.
http://jcp.bmj.com/content/47/7/657.short

wonder what pushing the serum zinc from 13 to 18 umol/l would have done to serum ferritin status.. vs treating with iron chelation drugs, which dropped serum zinc into the single digits (bad), and afterwards compensating with a zinc supplement...

also interesting

Association between serum ferritin and measures of inflammation, nutrition and iron in haemodialysis patients
https://academic.oup.com/ndt/article/19 ... easures-of

"Serum ferritin values in the range of 200–2000 ng/ml may be increased due to non-iron-related factors including elements of malnutrition–inflammation complex syndrome (MICS)."

now to read about mics..

Copper 108 µg/dL
Zinc 115 µg/dL (Stopping Zinc for 1 month and test again)
Magnesium 2.1 mg/dL

D3 58.37 ng/mL (good progress)

Now todays ugly results, liver tests

AST 44 U/L
ALT 167 U/L
GGT 127 U/L

I am at doctor for liver checking.

A different test center confirms that "I am iron man" haha

hi to my eye your copper and zinc numbers look great - zinc could even stand to go a *smidge* higher in relation to copper. well done boosting it from 73 to 115! the copper zinc (or zinc copper, whichever) ratio looks pretty ideal as well.

if you can maintain with diet after this, excellent. and if you have to chelate iron chemically, you have some room for zinc to drop while still remaining in the upper end of the normal range. or you can top up with zinc supplement again as in the study posted previously.

magnesium could certainly go higher - 2.3-2.7 would be a reasonable range to aim for if you can (noting that past levels have been 2.24, 2.27, now 2.1). with levels above 2.3, the smallest % of people exhibit magnesium deficiency while still (obviously) remaining within the normal range.

i would say your d3 is fine where it is - if you continue to supplement d3, keep up a solid magnesium intake as well

i don't look at liver test results often at all but issues could be consistent with the high ferritin from what i've read in the last day. there are case reports of patients whose ms vanishes after liver transplant. there's also a thread somewhere here on the forum about 'ways to love your liver' !!

haha 'iron man' now officially your theme song

I may try a low dose magnessium supplement for 2 months and monitor. Level is decreasing so supplement is good idea.

I want to have 80 ng/mL D3 if I can maintain my calcium level. 4000 iu d3 works for me and it is summer. I believe in D3 and I am sure science will find alot more things about it.

jimmylegs, what testing frequency do you recommend for minerals/vitamins? I think about every 2 months after I become optimal. Thanks.

from what i've read and experienced it makes sense that mag would be dropping with sustained daily d3 at 4000IU. so, yes keep up the high dietary mag and supplements both with and away from the d3 pill (or liquid or whatever you use).

since you have such excellent access sure every two months would be fine until you find levels are steady enough not to bother so frequently.

i personally treat all tests as though overnight fasting is a requirement, just so i don't have to worry about circadian rhythm issues if testing at different times of day etc. i also found when i was monitoring uric acid for example, that i had to be careful not to have coffee before a test and so on. so just got in the habit of having tests done right first thing and then get on with the day.

anyway once you've figured out a maintenance regimen that works for you, i would think testing twice a year (perhaps start of summer and start of winter) would make sense. over time you might be able to drop to once a year. i have to head out for a while, back later

Hi, my name is Herman Sundaker. It's a pleasure to meet you all here.

Hi Herman, nice to meet you.

Today I went to a gastroenterologist for liver checking. Nothing urgent for now, ultrasound checking on monday. Fever again, easily manageable with washing head and paracetamol. Is it ferritin or is it Rebif. It is a big question for me. I need to get rid of ferritin quickly and continue Rebif. I don't smoke and drink alcohol. I hope my liver will handle Rebif full dose after lowering ferritin.

Transferrin saturation was %45 2 days ago. Today it is %31.

heya i am just looking up ranges for the liver enzymes and for AST i have seen 5-40 and 5-45 U/L. so definitely high but not necessarily over (or 'ugly'!)

for ALT, between 7 to 56 U/L. so 167 is clearly out there, but i am also reading, "Mild elevations are generally considered to be 2-3 times higher than the normal range."

so now GGT - ref range is 8 to 65 U/L. i am less familiar with that one, but look:
"Regularly screen for iron overload with a serum ferritin or GGT level to confirm that you don't have excess iron, and if you do, donate blood..."
so that one could be an easy fix. wonder if the others would also calm down, after dropping off some of your blood somewhere

again, not to suggest that you have hemochromatosis but i thought the weekly 500ml phlebotomy regimen below looked interesting:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093720/
"If a patient is a typical C282Y homozygote for hemochromatosis, it is likely that an elevated ferritin level is related to iron overload and weekly 500 mL phlebotomy is usually recommended until the serum ferritin falls to approximately 50 ng/mL. This number was chosen because it falls within the lower spectrum of the normal range of serum ferritin and allows for a patient who may reaccumulate iron to drift through the normal range before requiring additional phlebotomy. However, many patients, particularly women, will not show signs of iron reaccumulation, and maintenance phlebotomy may not be required for all patients. The need for maintenance can be predicted by observing the patient for 6 months after stopping phlebotomy and repeating the serum ferritin examination. In many countries, a patient at this stage can become a volunteer blood donor several times per year."

related posts:
http://www.thisisms.com/forum/general-d ... 06-30.html
and this (don't necessarily agree with all, but at least someone took the time):
http://www.doctoryourself.com/liver_15_ways.html

I hope I can handle weekly 500 mL phlebotomy. Nutrients and vitamins will be messed up but ferritin is my number one priority now. I don't prefer chelation because it may effect my liver in a bad way.