Re: Vitamin D is working!!

[Guest guest]

Good news. I had nearly the same experience about two

years ago now. My 'usual' pain was getting more severe,

more constant, and was stealing whole pieces of my life. My

diagnosed CLL was about two years old and I was told this

pain had nothing to do with the CLL. Not sure that was

entirely correct since I later learned my marrow was fairly

well packed. But at that time the suggestions were to see a

neurologist, and an orthopedist..... Endocrinology wasn't

even on the list of 'other doctors'. (tho I suspect that

had I pushed it psychiatrist would have been added )

I was able to avoid the other two ologists since It was

about the time that Mayo released it's Vitamin D study and

probably thanks to that I was able to get my GP to test my

D3 levels. To his shock my D was at about a 9. I started

taking 1000 iu as soon as the blood was taken. Within an

hour I began to sense feeling coming back to my feet and

ankles and after a few days the pain was less. I almost

couldn't believe the startling change. When the results

came back of course the dose was raised.

I got my endocrinologist involved and he ordered tests for

parathyroid, calcium, phosphorous and a few others. He

found that I was hyperparathyroid as well, but felt that

increasing the D3 would correct that in a month or so, and

it did. Vitamin D behaves more like a hormone in our

bodies, and if our D3 is off many systems can be affected

adversely. The endocrinologist said that my body was

stealing calcium from my bones, and hence my blood calcium

levels were high. Endocrinology IS the field that would

probably be the best bet to deal with D levels and how they

relate.

Some Doctors treat low levels by giving very large RX

prescription doses and re testing months later. My

endocrinologist offered that, but I opted to go the route of

taking the best quality 'vitamin' ( i use solgar gel caps

as they are good quality and the oil dissolves and is

absorbed more easily) and changing the dose in increments.

for me, about 1000 iu gave me about 10 points... that's an

estimate, and everyone may be different. It took about 7

months to get up to where I wanted to be. Different

approaches, but beware that some patients have found that

prescription D products are NOT d3, but d2, which can be

toxic. I've been told that the RX compounds are tablets

which are harder for the body to use.

There isn't very much good information regarding Vitamin D

in the medical community. This is probably due to the fact

that no one will do a study comparing subjects deliberately

deprived of vitamin D to see how they fare. It's a pipe

dream, but it would be nice if cancer patients had vitamin D

levels added to their 'usual' blood work and a data base

were compiled.... That could be done. A couple of us on

the lists have noticed that it's difficult to keep our D

levels on an even keel with our CLL. As my CLL ramped up,

the same dose did not keep pace. I had finally, slowly

gotten up to about 85, about where Mayo suggests cancer

patients be, and as my CLL got to crucial levels, I am now

in the 60's. I am also in treatment now, so that could be

affecting everything else as well.

Not sure anyone knows, and these are merely my thoughts

based on my observations, but it may be that D3 doesn't

hang out for long, and must be constantly replaced. Blood

levels change in short order, symptoms can be quickly

relieved, tho I am not sure if long term damage can be

reversed, so this suggests that this substance is one that

fluctuates depending on many factors, and since it has key

roles to play, should be part of our regular watch dogging.

For my part, a D panel is part of my usual blood work about

every other month now. Apparently it's something we should

monitor, but for me, the difference is dramatic.

be well, Beth Fillman

[Guest guest]

Beth, I ABSOLUTELY AGREE with everything you said!

1. Depression - I was questioned about depression and

like I told the doctor ...... I am not tired because I am

depressed, I am depressed because I am tired!

2. REGULAR TESTING - Yes I will make sure I am tested

regularly now for Vitamin D. I, like you, having read the

information before hand, had already started taking Omega

3/D3 two weeks BEFORE I was tested. I shudder to think how

low it might have been if I was not already taking some

Vitamin D.

3. IMMEDIATE RELIEF: I didn't mention this because I

thought people would think I was NUTS, but was glad to hear

you had almost immediate relief. I did not experience that

with the small doses but I sensed I had fast relief with

the first mega dose. When I took the first round I

" thought " I had experienced quick relief, ie a matter of

hours, but I couldn't be sure as prior to that I was taking

way too many pain pills.

When it was time to take the second pill I decided to make

sure I had some pain and had gone many hours without pain

medication. I elected to take just the D and suffer for a

few more hours. Much to my surprise, approx. 30 minutes

after taking the D Gel tab, the pain actually subsided

WITHOUT pain meds! It subsided to the point that I went

another 3-4 hours without taking anything for pain. I

thought.... " girl it must be in your head! " But maybe

not....... By the way, I am using the gel cap as well and

it dissolves quickly.

Again, it doesn't make all the pain go away but it greatly

decreases the frequency of pain meds and that, coupled with

" D " helps the fatigue.

4. D3/D2 - Good points!

Thanks again!

Joyce

[Guest guest]

Pain itself can cause fatigue and a deficiency in Vitamin D

cause osteomalacia or adult rickets [softening of the

bones]. I had this a few years ago. The pain and spasms in

my back was severe and I was even using a walker. I started

on vitamin D, 10,000 IU a day and within two months the back

pain was gone and the walker is in the store room. I still

take 10,000 IU a day. And yes, with chronic illness,

vitamin D use is constant and high. There are receptors for

D in just about every part of the body.

Besides not getting enough sun, I don't know what causes

vita d deficiency, but I am sure that even if your levels

were fine before CLL, just fighting cancer will lower them.

And no, I don't believe a deficiency causes cancer or that

having higher levels will keep you from getting cancer, but

from everything I have read, it makes getting through the

chemo with better outcomes a distinct possibility.

Keep on taking the D...

C.

[Guest guest]

For anyone on high dose vitamin D be sure to have your

levels checked regularly - most people I know are checked

every 3 months. Also check to see whether you are taking D2

or D3.

For the doctors or researchers, I know I have read a couple

of arguments for taking D3 rather than D2, but can't find

the references and would appreciate it if one or more of you

could chime in on this issue.

Thanks!

Pat

[Guest guest]

http://www.medscape.com/viewarticle/589256_4

(free registration is required)

This article should help on the D3 vs D2 argument.

C

[Guest guest]

It is important to remember that this article represents one

person's opinion. I do not know the answer myself, but most

people believe there is no difference between D2 and D3 as

they are both changed in the active form in the body. The

most important measure is the total vitamin D levels, which

should be above 30 ng/mL for best bone health. I emphasize

the bone health because there might be data suggesting

higher levels achieve other benefits.

Rick Furman, MD

Cody wrote:

> http://www.medscape.com/viewarticle/589256_4

> (free registration is required)

>

> This article should help on the D3 vs D2 argument.

[Guest guest]

Here are some additional resources (links) with valuable

Vitamin D information.

1) Vitamin D3- see attached link to a CLL Topics update

12/12/09 on the importance of vitamin D3 for us folks with CLL.

http://updates.clltopics.org/1704-vitamin-d3-make-sure-you-are-not-deficient

2) CLL Topics has many articles on vitamin D3 & CLL. Here's

an excellent tutorial overview link below (about dosing,

periodic blood tests needed, and dangers to be aware of)

http://www.clltopics.org/VitaminD3/EssentialforHealth.htm

3) Mayo Clinic released a paper 11/3/10 titled " Mayo Clinic

Finds Insufficient Vitamin D Levels in CLL Patients Linked

to Cancer Progression " Go to

http://www.mayoclinic.org/news2010-rst/6033.html?rss-feedid=1

4) Some interesting comments on the Mayo 11/3/10 Vitamin D

paper. Comments are from " Blood Journal " /3 Feb., 2011/Volume

117/Number 5

http://bloodjournal.hematologylibrary.org/content/117/5/1439.full.pdf

Hope this helps - Patti

[Guest guest]

How much Vit D2 or D3 is recommended for a woman aged 67

weighing around 125 lbs? Thanks in advance.

Q

Rick Furman, MD wrote:

> It is important to remember that this article represents one

> person's opinion. I do not know the answer myself, but most

> people believe there is no difference between D2 and D3 as

> they are both changed in the active form in the body. The

> most important measure is the total vitamin D levels, which

> should be above 30 ng/mL for best bone health. I emphasize

> the bone health because there might be data suggesting

> higher levels achieve other benefits.

[Guest guest]

The current recommendations are for 400 IU daily for those

younger than 65 and 600 IU daily for those over 65. I tend

to dose by levels, typically having patients on 1000-2000 IU.

Q wrote:

> How much Vit D2 or D3 is recommended for a woman aged 67

> weighing around 125 lbs? Thanks in advance.

[Guest guest]

and all,

" HOW MUCH " is a question that can't be answered by factoring

age or weight. The only way to figure out how much Vitamin

D one NEEDS is to have blood tests that measure, not only

the levels of D in your blood, but how that level is

affecting other functions in your body..

'other tests' would be, PTH, parathyroid hormone; Total

Calcium; Phosphorus; and Magnesium, would be the overall

panel, however depending on what your physician finds, he

may do further tests.

The body uses Vitamin D in many areas, including the

absorption and regulation of calcium. Too low a level of D

and your body will take it from your bones. Apparently this

is true even if you spend all day drinking milk and eating

spinach... your body will not absorb it.

I have seen some 'popular' articles and even heard of

doctors proscribing calcium be taken WITH vitamin D,

however, without knowing what your total calcium is, and if

your body can actually use more calcium, this could be at

the least a wast of time and money, and at the worst cause

serious health issues.

First have the simple blood tests done. Then, depending on

your current levels, begin taking somewhere between 400iu

and 1000 iu at a time if you want to increase slowly. Most

people will find they are deficient to one degree or

another. What level you aspire to will depend on which

research you want to believe. Bone health levels may be 30,

however this is far lower than what the Mayo research

indicated as ideal for cancer patients, particularly those

of us with B cell malignancies.

If you work with a doctor, probably and endocrinologist,

they may suggest taking a patient up quickly with high dose

prescription formulas, however this has not worked for some

of us. Some found they were actually taking Vitamin D2 in

that scenario, and saw no increase in blood levels. A good

quality non prescription formula, preferably oil based gel

caps are probably the best bet, AND please read labels

carefully to be sure that you are ONLY getting vitamin D3,

cocopherol. One nearly identical bottle of the same brand I

purchased I found had huge quantities of vitamin A, five

times the amount of that as the actual D3... Vitamin A is

apparently found in some of the same things as d, however

too much A is not a great thing..so the label said, in very

small print, " incidentally occurring vitamin a " .so read

labels, whether prescription or over the counter.

gradual increase is probably fine for most patients. but

most important is RE test, on somewhat of a regular

schedule, and keep track. Some of us have found our D

levels to go down on the same dose, and have wondered if

this is related to progression of our CLL, however there is

no actual data to support this.... just what we've noted.

Hence it's not clear if upping the dose is a good idea. When

I have seen that, we then go back and do a more complete

panel, with PTH etc to see if the current level indicates a

need for adjustment, it's the best we have available, Some

things are probably not knowable.

all the best. Beth Fillman