Re: Re: Vit D recommendations today - Institute of Medicine

[Guest guest]

Don't eat crow yet and you can quote the doctor below!

Triple That Vitamin D Intake, Panel Prescribes

By MELINDA ,Wall Steet Journal

http://tinyurl.com/34s925w or

http://online.wsj.com/article/SB10001424052748704584804575645023841631864.html?K\

EYWORDS=MELINDA+BECK

[Guest guest]

So, If one is vitamin D deficient is the goal still between 50 and 80.

If getting there involves mega (50,000 u) doses should one be taking

V2 (available over the counter) or V (by prescription.. When reading

lab results exactly how are they reported and what tells one what the

right course of action for them is in the report. Once one reaches an

acceptable level what dose should be considered and how often should

it be monitored. All the D2 vs D3 conversations have me on the lists

and with my doctor have left me totally confused.

Thanks for any input to shed light on this topic!

Pat

On 11/30/10, dano mendelson <dano.mendelson@...> wrote:

> Don't eat crow yet and you can quote the doctor below!

>

> Triple That Vitamin D Intake, Panel Prescribes

> By MELINDA ,Wall Steet Journal

>

> http://tinyurl.com/34s925w or

>

http://online.wsj.com/article/SB10001424052748704584804575645023841631864.html?K\

EYWORDS=MELINDA+BECK

>

[Guest guest]

Rick is correct.

From a purely statistical point of view, CLL should be broken out of the entire

data set and studied separately. We all know that our albeit highly

individualized situations still have one thing in common: CLL. This provides

sufficient reason to segregate us from the non-CLL part of the study.

As an economist / statistician, I'd go one further: Until or unless a CLL stats

review is completed, we should each carry on as before. First, do no harm.

________________________________________

From: [ ] On Behalf Of rrfman

[rrfurman@...]

Sent: Tuesday, November 30, 2010 9:12 PM

Subject: Re: Vit D recommendations today - Institute of Medicine

This article really caught me by surprise.. (I am " eating crow " ).

I do believe the data for patients with lymphomas and CLL need to be reviewed

separately and I am still advocating 1000-2000 IU daily for my patients, but now

you cannot quote me on it.

Rick Furman, MD

>

> Did anyone see the article in the NY Times today? Also says we're taking

> too much -

>

>

> In a message dated 11/30/2010 8:55:43 P.M. Eastern Standard Time,

> cllcanada@... writes:

>

>

>

>

> Recommendation of Vit D and calcium daily intake were released today.

>

> For people 50 to 70 years of age the recommended daily dietary

> allowance is 600 UI.

>

> 71+ years 800 IU.

>

> For both groups the Upper intake level is pegged at 4000IU.

>

> The report states:

>

> " While these values vary somewhat by age, as shown in the table, the com-

> mittee concludes that once intakes of vitamin D surpass 4,000 IUs per day,

> the risk for harm begins to increase. "

>

> Source Report PDF: _http://tinyurl.com/2b5ych3_

> (http://tinyurl.com/2b5ych3)

>

> ~chris

> CLL CANADA

>

>

>

>

>

>

>

>

[Guest guest]

I have blogged about vitamin D3 this week. I remain to be convinced that it

will help anyone's CLL, but the only downside seems to be the risk of

hypercalcemia, so if you are convinced that it might help you and you monitor

your serum calcium then go ahead with it. But is you are a skeptic, hold

your horses.

Terry Hamblin

In a message dated 02/12/2010 15:08:29 GMT Standard Time, bethcat@hamp

tons.com writes:

If I were Dr. Furman I would not begin eating crow just yet.... (that could

put him over the top on his vitamin D3 'Intake;) And for everyone who is

concerned about this in the realm of CLL and other cancers, please do not

throw out your vitamin d3 just yet.

The biggest problem I have with one size fits all recommendations of this

sort is that they don't fit everyone.... ANY vitamin D3 supplement program

should be done ONLY with pre and during blood testing. Cmon folks, we get

blood drawn all the time. with butterfly catheters now, one more tube is no

big deal. The test is NOT expensive for those concerned about that. It

should be covered along with the rest of an MD ordered group of tests.

I have several problems with this 'scientific' article. first - " intake "

is a strange word, hard to calculate and prove.... they include foods that

are 'fortified' with VitD3, and I think we all know that the level of trust

in the food industry is somewhat specious. heating, freezing and even

radiating those foods could very well nullify any availabilty of that added

ingredient... secondly, what source is used in 'additives'... bio availability

of the actual substance is rarely known and almost never proven. All the

label says is that they have added so many iu's to the cereal or whatever.

Milk, Spinach? sure, if you know where it came from, what it was 'fed' and

how it was processed ! go figure that the stated D3 is really there for

you to use. I sure won't take that to the bank. Salmon etc.... same deal.

Assume one lives in the northern parts of the US, Canada, and Europe, the

amount of sun providing a good source of Vitamin D3 is simply not enough,

alone or with additives. As for food sources, again, cooking, freezing etc

are processes that could alter the estimates of 'available' substance. Multi

vitamins are anyone's guess.

The Mayo studies used thousands of CLL and other cancer patients and their

conclusions were, while 'preliminary' pretty convincing. Almost without

exception, they found that blood taken from us and studied showed

deficiencies. Someone, I believe it was , postulated, and I know he wasn't

concluding, but based on his experience, it may well be that we 'use' vitamin

D3

differently than people who do not have our diseases. I agree, from my own

experience.

My experience and that of others and now even my GP, is that I will

continue to take my current dose, keep my level at around 80 and watch my

bloods

monthly since I do anyway. The differences, and improvements have been

nothing short of amazing for me. This even though my CLL is progressing. My wbc

has virtually stopped going up, but this may be due to more and larger

nodes, my calcium is now within normal ranges without adding, since when my D3

was at 11 I was hypercalcemic and had secondary hyperparathyroidism...

both gone now. I have more energy and my neuropathies are gone. I would far

rather take Vitamin D3 than one of those osteoporosis drugs. this has taken

almost a year, and only done with concurrent blood work, and the help of

both my GP and my long time endocrinologist (cornell, now retired and I do

miss him) I know my GP is one who was so fearful of Vitamin d3 that he watches

the kidney values too.... We are all different, and our CLL's are all

differe nt, so I am NOT saying that everyone should jump up their intake. OR

drop it. What I would say however, without reservation is that ALL of us

should be tested as part of our care, whether it is watch and wait or therapy

of any sort. Since it can't hurt to have the information and in my dream

world of cancer research (where data is made available world wide), that

information could prove helpful to others down the road.

I didn't see any blood levels at all in their conclusions and their

'group' is far too vast and complex to be of any use in a research setting. For

years patients have been scared away from Vitamin D3... this will only keep

that going, to the detriment of those who need this therapy. Maybe if

you're a 13 year old male and spend time outdoors playing, (do they anymore? or

are they on xbox, or some video game, and how many live with good diet,

fresh food, and so on) But if you're around 50 + and have CLL I suggest not

cooking that crow just yet.

all my best, Beth Fillman

[Guest guest]

I find it interesting that this study was not done on or did not

include vitamin D levels in the blood rather that the doses one should

take. This whole issue is leaving me increasingly confused

When it first came up I asked that my Vit. D3 level be tested. My

level for Vit. D came back in the low 20s. My doctor put me on 50,000

units to bring it up. In three months it had only come up to the low

30's, so she doubled the dose, which brought me up to 80 on the nose

after another 5 months. Now we are monitoring to determine what I need

to maintain a reasonable level of Vit. D.

I'm becoming more and more confused. Exactly what test(s) - I'm in the

US, so the wording could be different in other countries - should one

be getting to measure Vit. D. Are there separate tests for D2 and D3.

How are the results reported - separately for the different D's? If

so, which numbers are most important? What other tests should be

included for safety - a couple of possible problems have been noted in

other areas if the D level is to high or low.

I thought I was getting D3. After a post from Koffman to another

patient who was also doing the 50,000u dose, asking if she was sure

she was getting D3, I called my pharmacy and asked what mine was. It

turns out that I've been taking D2. Does that mean a lot if my level

is now up in the range that many doctors have indicated is

appropriate, or should patients who are in my past position insist on

D3. Now that my level is up should I be insisting on D3? What is the

difference, proven or speculated, between taking one or the other?

I know that, based on this latest study, all of this may be considered

out the window, so I'm only asking for opinions. It seems that, as

others have said, further studies need to be done specifically for CLL

patients and for cancer patients in general separate from the general

population, or that these populations need to be reported as sub

groups within a large study. And, again, it seems that levels in the

blood should be a part of any study recommending dosage. I was doing

everything " right " and was very surprised at how low my level was.

Thank you.

Pat

On 12/2/10, TERJOHA@... <TERJOHA@...> wrote:

> I have blogged about vitamin D3 this week. I remain to be convinced that it

> will help anyone's CLL, but the only downside seems to be the risk of

> hypercalcemia, so if you are convinced that it might help you and you

> monitor

> your serum calcium then go ahead with it. But is you are a skeptic, hold

> your horses.

>

> Terry Hamblin

>

>

> In a message dated 02/12/2010 15:08:29 GMT Standard Time, bethcat@hamp

> tons.com writes:

>

>

>

>

> If I were Dr. Furman I would not begin eating crow just yet.... (that could

> put him over the top on his vitamin D3 'Intake;) And for everyone who is

> concerned about this in the realm of CLL and other cancers, please do not

> throw out your vitamin d3 just yet.

>

> The biggest problem I have with one size fits all recommendations of this

> sort is that they don't fit everyone.... ANY vitamin D3 supplement program

> should be done ONLY with pre and during blood testing. Cmon folks, we get

> blood drawn all the time. with butterfly catheters now, one more tube is no

> big deal. The test is NOT expensive for those concerned about that. It

> should be covered along with the rest of an MD ordered group of tests.

>

> I have several problems with this 'scientific' article. first - " intake "

> is a strange word, hard to calculate and prove.... they include foods that

> are 'fortified' with VitD3, and I think we all know that the level of trust

> in the food industry is somewhat specious. heating, freezing and even

> radiating those foods could very well nullify any availabilty of that added

> ingredient... secondly, what source is used in 'additives'... bio

> availability

> of the actual substance is rarely known and almost never proven. All the

> label says is that they have added so many iu's to the cereal or whatever.

>

> Milk, Spinach? sure, if you know where it came from, what it was 'fed' and

> how it was processed ! go figure that the stated D3 is really there for

> you to use. I sure won't take that to the bank. Salmon etc.... same deal.

>

> Assume one lives in the northern parts of the US, Canada, and Europe, the

> amount of sun providing a good source of Vitamin D3 is simply not enough,

> alone or with additives. As for food sources, again, cooking, freezing etc

> are processes that could alter the estimates of 'available' substance.

> Multi

> vitamins are anyone's guess.

>

> The Mayo studies used thousands of CLL and other cancer patients and their

> conclusions were, while 'preliminary' pretty convincing. Almost without

> exception, they found that blood taken from us and studied showed

> deficiencies. Someone, I believe it was , postulated, and I know he

> wasn't

> concluding, but based on his experience, it may well be that we 'use'

> vitamin D3

> differently than people who do not have our diseases. I agree, from my own

> experience.

>

> My experience and that of others and now even my GP, is that I will

> continue to take my current dose, keep my level at around 80 and watch my

> bloods

> monthly since I do anyway. The differences, and improvements have been

> nothing short of amazing for me. This even though my CLL is progressing. My

> wbc

> has virtually stopped going up, but this may be due to more and larger

> nodes, my calcium is now within normal ranges without adding, since when my

> D3

> was at 11 I was hypercalcemic and had secondary hyperparathyroidism...

> both gone now. I have more energy and my neuropathies are gone. I would far

> rather take Vitamin D3 than one of those osteoporosis drugs. this has taken

> almost a year, and only done with concurrent blood work, and the help of

> both my GP and my long time endocrinologist (cornell, now retired and I do

> miss him) I know my GP is one who was so fearful of Vitamin d3 that he

> watches

> the kidney values too.... We are all different, and our CLL's are all

> differe nt, so I am NOT saying that everyone should jump up their intake.

> OR

> drop it. What I would say however, without reservation is that ALL of us

> should be tested as part of our care, whether it is watch and wait or

> therapy

> of any sort. Since it can't hurt to have the information and in my dream

> world of cancer research (where data is made available world wide), that

> information could prove helpful to others down the road.

>

> I didn't see any blood levels at all in their conclusions and their

> 'group' is far too vast and complex to be of any use in a research setting.

> For

> years patients have been scared away from Vitamin D3... this will only keep

> that going, to the detriment of those who need this therapy. Maybe if

> you're a 13 year old male and spend time outdoors playing, (do they

> anymore? or

> are they on xbox, or some video game, and how many live with good diet,

> fresh food, and so on) But if you're around 50 + and have CLL I suggest not

> cooking that crow just yet.

>

> all my best, Beth Fillman

>

>

>

>

[Guest guest]

I understand that Vit D depletes calcium, that why my wife takes a

calcium/vit d combination.

I have been taking Vit D3 (5000 iu) daily. Currently my counts are at 75.

I'll be tested every 6 months to insure adequate results.

On Fri, Dec 3, 2010 at 1:21 PM, Toby <thollander33@...> wrote:

>

>

> The test used to check my D was called a 25-OHD3. It listed the range as

> 30-100. (I was at 35). My nephrologist ordered the test and advised me to

> lay off of Vitamin D because my calcium levels were high, which is a kidney

> concern (I have had renal failure in the past due to cyroglobulemia). There

> is apparently a relationship between calcium in the blood and D. The test

> reported the total vitamin D, the D3 and D2. Google has sites that explain

> the chemistry...

>

> Toby Hollander

> Portland, ME

>

>

> > > I have blogged about vitamin D3 this week. I remain to be convinced

> that it

> > > will help anyone's CLL, but the only downside seems to be the risk of

> > > hypercalcemia, so if you are convinced that it might help you and you

> > > monitor

> > > your serum calcium then go ahead with it. But is you are a skeptic,

> hold

> > > your horses.

> > >

> > > Terry Hamblin

> > >

> > >

> > > In a message dated 02/12/2010 15:08:29 GMT Standard Time, bethcat@hamp

> > > tons.com writes:

> > >

> > >

> > >

> > >

> > > If I were Dr. Furman I would not begin eating crow just yet.... (that

> could

> > > put him over the top on his vitamin D3 'Intake;) And for everyone who

> is

> > > concerned about this in the realm of CLL and other cancers, please do

> not

> > > throw out your vitamin d3 just yet.

> > >

> > > The biggest problem I have with one size fits all recommendations of

> this

> > > sort is that they don't fit everyone.... ANY vitamin D3 supplement

> program

> > > should be done ONLY with pre and during blood testing. Cmon folks, we

> get

> > > blood drawn all the time. with butterfly catheters now, one more tube

> is no

> > > big deal. The test is NOT expensive for those concerned about that. It

> > > should be covered along with the rest of an MD ordered group of tests.

> > >

> > > I have several problems with this 'scientific' article. first -

> " intake "

> > > is a strange word, hard to calculate and prove.... they include foods

> that

> > > are 'fortified' with VitD3, and I think we all know that the level of

> trust

> > > in the food industry is somewhat specious. heating, freezing and even

> > > radiating those foods could very well nullify any availabilty of that

> added

> > > ingredient... secondly, what source is used in 'additives'... bio

> > > availability

> > > of the actual substance is rarely known and almost never proven. All

> the

> > > label says is that they have added so many iu's to the cereal or

> whatever.

> > >

> > > Milk, Spinach? sure, if you know where it came from, what it was 'fed'

> and

> > > how it was processed ! go figure that the stated D3 is really there for

> > > you to use. I sure won't take that to the bank. Salmon etc.... same

> deal.

> > >

> > > Assume one lives in the northern parts of the US, Canada, and Europe,

> the

> > > amount of sun providing a good source of Vitamin D3 is simply not

> enough,

> > > alone or with additives. As for food sources, again, cooking, freezing

> etc

> > > are processes that could alter the estimates of 'available' substance.

> > > Multi

> > > vitamins are anyone's guess.

> > >

> > > The Mayo studies used thousands of CLL and other cancer patients and

> their

> > > conclusions were, while 'preliminary' pretty convincing. Almost without

> > > exception, they found that blood taken from us and studied showed

> > > deficiencies. Someone, I believe it was , postulated, and I know

> he

> > > wasn't

> > > concluding, but based on his experience, it may well be that we 'use'

> > > vitamin D3

> > > differently than people who do not have our diseases. I agree, from my

> own

> > > experience.

> > >

> > > My experience and that of others and now even my GP, is that I will

> > > continue to take my current dose, keep my level at around 80 and watch

> my

> > > bloods

> > > monthly since I do anyway. The differences, and improvements have been

> > > nothing short of amazing for me. This even though my CLL is

> progressing. My

> > > wbc

> > > has virtually stopped going up, but this may be due to more and larger

> > > nodes, my calcium is now within normal ranges without adding, since

> when my

> > > D3

> > > was at 11 I was hypercalcemic and had secondary hyperparathyroidism...

> > > both gone now. I have more energy and my neuropathies are gone. I would

> far

> > > rather take Vitamin D3 than one of those osteoporosis drugs. this has

> taken

> > > almost a year, and only done with concurrent blood work, and the help

> of

> > > both my GP and my long time endocrinologist (cornell, now retired and I

> do

> > > miss him) I know my GP is one who was so fearful of Vitamin d3 that he

> > > watches

> > > the kidney values too.... We are all different, and our CLL's are all

> > > differe nt, so I am NOT saying that everyone should jump up their

> intake.

> > > OR

> > > drop it. What I would say however, without reservation is that ALL of

> us

> > > should be tested as part of our care, whether it is watch and wait or

> > > therapy

> > > of any sort. Since it can't hurt to have the information and in my

> dream

> > > world of cancer research (where data is made available world wide),

> that

> > > information could prove helpful to others down the road.

> > >

> > > I didn't see any blood levels at all in their conclusions and their

> > > 'group' is far too vast and complex to be of any use in a research

> setting.

> > > For

> > > years patients have been scared away from Vitamin D3... this will only

> keep

> > > that going, to the detriment of those who need this therapy. Maybe if

> > > you're a 13 year old male and spend time outdoors playing, (do they

> > > anymore? or

> > > are they on xbox, or some video game, and how many live with good diet,

> > > fresh food, and so on) But if you're around 50 + and have CLL I suggest

> not

> > > cooking that crow just yet.

> > >

> > > all my best, Beth Fillman

> > >

> > >

> > >

> > >