When to go off REBIF - went Gluten Free and Colitis healed

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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Tue Feb 06, 2018 8:30 pm

sry 250 mcg or 2500? thought i saw 250 earlier.

zinc still pending? or no?

still not a folate pro lol

re mg, yep 0.87 mmol/l is well below ideal, and at risk of getting worse if supplementing d3 (whether at 2000 or at 4000) without cofactors.
related - seen this? natural-approach-f27/topic29886.html

re fe/iron. not serum ferritin? actually serum iron? units look like serum ferritin. if so, 268 looks somewhat on the high side. interesting. main dietary sources? highish iron makes me even more interested in serum zinc status. hope you have local options for follow-up in the zinc test department!!
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Wed Feb 07, 2018 6:28 am

Vit B = 2500 mcg

Yes, I did see that on cofactors.....thx


not sure on the zinc, they said they did it, but now they say they didn't....
I guess its obvious they don't really want to release these results, that's why I am having problems with units as well...
will look into it further, but it may be weeks or longer, depending on our options to get zinc.

I purchased some zinc, but don't want to add it until we get test results, but I feel that we should add it anyways...thoughts?

they think they are doing the right thing, but anyone reading this, clearly understands they are not...


yes it is serum ferritin

dietary sources...
gluten free - dairy free
vegetables, salads
chicken, some red meat
fruits
nothing processed

we do have a higher content of iron in our water,
but we have a large carbon filter for the kitchen cold water that takes it down from 389 ug/L to less than 7 ug/L . Then that water goes into a Brita filter for drinking...
So, cooking and drinking water should be okay.
The bathroom shower and sink are at 389 ug/L, so unless it is being absorbed, it should be okay...
The well water was tested last year....
Her MS started in 2000 and her big attack was in 2010 and we moved to our present location with well water 6 months later.

also, zinc in well water is 4 ug/L after filtered
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Wed Feb 07, 2018 9:44 am

thx for detail re b12.

any issues sleeping at all? (apologies i have not gone back to check)

is it the doc's office who's the test result gatekeeper? may have mentioned this already in this topic, but fwiw: my docs used to be cagey about results, but now if i get organized i'll be able to access my own results online. some sort of nominal set up fee and after that they say i'll be able to see my online results any time in future. for ppl located elsewhere in the world, i've been able to log in and check online results for years and years now.
who's your local labwork provider?

given the higher serum ferritin (ty) status, should be okay to start zinc - from that angle at least.

you don't have a serum copper level, which means next step is to have a closer look at the specific zinc product you chose. detaills? link to label info?

re dietary iron sources, i think we got the wires crossed a little.
related specifics:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
(rating is based on nutrient content per calorie).

scant if any info re iron absorption through skin from water. took some creative search term shenanigans even to come up with this:

Interaction of mineral salts with the skin: a literature survey
fft: http://onlinelibrary.wiley.com/doi/10.1 ... 731.x/full

"Although the topical benefits of several minerals such as zinc, magnesium and iron are recognized and, in some cases, approved by the FDA, the topical benefits of the others to the skin are largely unexplored and unexploited. ... To the best of our knowledge, we are unaware of any specific therapeutic usage of topical iron delivery"

still, since we know magnesium makes it in by feel, could be reasonable to expect some iron absorption from unfiltered water??? maybe connected to higher ferritin status and maybe no.

still, i love how much info you have about your well water content.

ultimately, it will be valuable to understand how serum mineral levels and ratios are behaving themselves (or not). does high iron imply low zinc. how is serum copper in relation to zinc? high cu:zn ratio (not ideal) or relatively low? (yes pls)
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Wed Feb 07, 2018 3:59 pm

thx...
no sleeping issues.

yes, docs office. We are going in tomorrow to sign to get what they have, but may be just what we have now, but will have official correct copy. Life Labs

Zinc - Jamieson 50mg (gluconate) - hmm is this too much?

will get copper done with zinc on next round...

checked out iron chart... she eats most items on chart....but not sure what I am suppose to do with the ratings though...lol
eats spinach, adds turmeric on food every night
asparagus, romaine...etc...
we eat lots on that list....

couldn't find anything on iron absorption thru skin...but like you said, maybe or not......
we are eating a lot of those high iron foods....

yes, have more results on well water, iron was the high one and bad stuff like arsenic, cadmium, etc... where very low.

copper in filtered well water was also low .54 ug/L

I should get B12 results tomorrow and maybe zinc?

so need to
1:confirm zinc amounts to take... is 50 mg too much? and should she take copper as well if she takes zinc
2:get zinc tested
3:get copper tested
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Wed Feb 07, 2018 5:43 pm

hi again. ok looks like life labs has online access if you decide to look into it
https://myresults.lifelabs.com/#/

i kind of hate jamieson lol. but we all start somewhere :D

50mg without copper is fine for short term therapeutic purposes. at one time my doc prescribed 100 mg zinc per day for a month.
40mg per day is upper limit for longer term maintenance use. it can be expected to have an effect on iron status.

supplemental zinc should be blended with copper in the ratio of 50:2. you could just add a 2mg copper supplement since you already have the other. it rubs me the wrong way to pay for two separate supplements when they should be blended, but that is just me.

recently i've been trying out L-Opti zinc by now foods. 30 mg zinc per pill, and it does contain copper. normally these days i might have one of those one day, then an ACES+Zn (only 7.5 mg zinc, no copper) the next. have a coppery diet as well http://www.whfoods.com/genpage.php?tnam ... #foodchart
have never been copper deficient in the past, only zinc.

if you care to throw one more test on the list in addition to zinc and copper, serum uric acid can be interesting.

i had ms average uric acid until i fixed my zinc deficiency. then suddenly bang, matched higher healthy controls levels.

knowing that vegetarians are at risk of lower zinc status, i just got curious and went looking for ua status in vegetarians.

small related study:

Effects of a long-term vegetarian diet on biomarkers of antioxidant status and cardiovascular disease risk
https://www.ncbi.nlm.nih.gov/pubmed/15474873

from full text:

............................Vegetarians (n 30).....Non-vegetarians (n 30)
Uric acid (umol/l)............239 (87.7)................ 306 (68.3)

interesting to see that the vegetarians' average ua status matches that of average ms patients in remission (160s in relapse, 194 the ms ua average - my old nemesis), while non vegetarians' ua levels are a better match for healthy controls.
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Wed Feb 07, 2018 7:05 pm

great thanks!!!

I was thinking Jamieson could get that response....lol

Will start the magnesium , zinc and copper....

and will try to get uric acid , zinc and copper test numbers as soon as we can.

and will post if something additional comes up with the recent tests...

Thanks again.... :-)
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Thu Feb 08, 2018 5:34 pm

haha! sounds good. will look forward to next update(s) :)
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Thu Feb 08, 2018 7:28 pm

hey, got the info and also got access to lab results....thanks for that tip... :-)
B12 was the only one that we didn't have and they didn't want to give that number to me...
B12 is at 1334 - normal range 138-652 pmol/L ---more than twice the upper limit
I read that high levels of B12 could be stored in the liver for 4-5 years....
2 yrs ago it was at 1078, still high
she was taking 1000 mcg 2 years ago and it was increased to 2500 mcg.....
we stopped it for now....and I guess need to figure out what to take to reduce it...
looks like I have some time to figure it out...

ever run into this issue.....
the report was flagged that B12 is HI...
its non toxic, but high levels can cause side effects like nausea and dizziness etc...and guess what, that is something that she is experiencing... now, it could be MS, but normally nausea and dizziness have been the start of a flare up for her....so it has been difficult recently to determine if a flare was starting or not....and its been not...
wondering if its common practice or okay to ignore high levels of B12....
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby NHE » Thu Feb 08, 2018 10:36 pm

dano wrote:normal range 138-652 pmol/L

369-738 pmol/L would be a much better target range. 138 pmol/L is much too low and represents a deficiency.

You may be interested in reading the following topic for more information about B12.

natural-approach-f27/topic24857.html
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Fri Feb 09, 2018 5:48 am

take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Fri Feb 09, 2018 7:10 am

well, it could be another underlying cause for elevated levels, (liver damage etc) but taking 2500 mcg of B12, is a bit much, so she is going to stay off B12 until her next blood work in 3 weeks... and we will see if it drops or not...
Everything I read, says elevated levels should be investigated, especially this high, but no one has raised a red flag, except for the lab.

Thanks on the proper range, we will use that to see if we can get it lower...-> 369-738 pmol/L

This is a link to this thread? lol
general-discussion-f1/topic29919.html#p252177

thx...
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Fri Feb 09, 2018 7:16 am

link brings the higher serum level closer to the range info.
if the docs are aware of the high dose b12 intake, they will not likely be looking for less usual suspects. occam's razor

The pathophysiology of elevated vitamin B12 in clinical practice
https://academic.oup.com/qjmed/article/ ... 05/1538806
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Fri Feb 09, 2018 1:44 pm

What were the levels you had, I could only find this reference....
re b12 though, 500 pg/ml aka 370 pmol/L.


anyways, she needs to stay off B12 for a few weeks and hopefully we see a bit of a reduction in the numbers...

well, I am glad I stopped by here for some help, you guys have been great...thanks

I will be getting my numbers from lab in the future as well....
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Fri Feb 09, 2018 2:01 pm

hi yes 370 pmol/l or 500 pg/ml is a lower cutoff proposed in the list.

nhe posted a reference range using this lower cutoff above

i personally use 500 pmol/l (aka 678 pg/ml) as a target, to stay away from the lower cutoff.

i don't care to go crazy high for no particular reason - have thoroughly learned that more of a good approach does not equate to better.
at this point, i prefer to achieve a good level via dense dietary sources and either a multi, or a b complex, vs isolated high dose b12 supplements.

smart idea re lab results - go to the source! (and carefully inspect potentially disease-promoting reference ranges).

i'll be interested to hear any results which might come in. will be looking for uric acid etc!!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Wed Mar 21, 2018 1:46 pm

got some more results -
she has not taken any zinc or copper supplements yet...

Uric Acid - Mar 2018 - 204 umol/L
Zinc - Mar 2018- 12.1 umol/L
Copper - Mar 2018 - 18.9 umol/L

thx
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