Vitamin D

[rcbaker200]

Out of the 1700 25-hydroxy vitamin D tests, every one has been paid for by insurance, including medicare and medicaide. I know that because if it didn't get paid for, the patient would complain to me. Also I have several friends who are on medicare, and they get the blood test paid for 100%, just like any other blood test is paid for. I also have patients on medicaide only, and they get it paid for. Also Horizon Blue Shield of NJ has always paid for my tests.

Now every blood test has to have a diagnosis code associated with it. If a patient is known to have a low vitamin D level, I put 268.9.
If the patient has osteoporosis, I put 733.00
Osteopenia - 733.90.
If none of these apply, if the patient has had muscle pain or inflammation of the muscle, I put 729.1, myositis. (Vitamin D insufficiency has been proven to be associated with muscle pain or soreness.)
ALS is 335.20. However I cannot take it for granted that medicare will accept the need for a level just with that code. They haven't read the latest research.

The full retail price of the 25-hydroxyvitamin D level is $200. But what do the insurance companies pay the labs? In most cases, but not all, they have a contract with the lab and knock down the price to about $50. I mention this so noone will feel guilty that they are costing their insurance company a great deal of money.

An additional note - I have run across situations about a dozen times in 5 years where a physician will tell his patient "Your insurance won't pay for that test." It is an incorrect statement usually told to the patients because the doctor has no clue as to the prevelance and importance of vitamin D deficiency. Also there is always a possibility that the person who answers the phone for an insurance company may not give the correct answer.

As far as repeat studies, initially I sometimes got a repeat in 3 months. Other doctors I have worked with have gotten this too, and again, it has always been paid for (with the repeat test, since a low level has already been diagnosed, the 268.9 code can be used). Now that I have the experience with levels, I rarely have need to repeat a level before 6 months. Once it's stabale at an idieal level, it could be changed to every 12 months.

So there is no misunderstanding, let me repeat:

MEDICARE AND MEDICAIDE AND EVERY OTHER INSURANCE COMPANY HAS ALWAYS PAID FOR A 25-HYDROXY VITAMIN D LEVEL. Final note - it is the total that you want, the breakdown between D2 and D3 doesn't matter. And DO NOT get the 1-25-hydroxy vitamin D. It's a different test and is worthless in determining if Vitamin D is deficiency. About once a year I have seen a laboratory make a mistake and do the wrong test.

[rcbaker200]

To Alley:

I have just talked about taking Vitamin D to correct a deficiency. I have made no comment about taking calcium supplements.

It is true that the natural way to get vitamin D is the sun. North of Georgia, the sun is not intense enough to make vitamin D all winter and most of the fall. Not only do most of us live far from the equator, but we wear clothes! And we go to the store and put on sunscreen which is very effective against blocking vitamin D production.

2/3rds of America have low vitamin D levels less than 32 ng. (evidence indicates the figure is a lot higher with ALS, and the level is much lower than the non-ALS population with vitamin D deficiency). Most of the levels that are "normal" at 32 or higher, are minimally normal, in the 30's. About 10% are above 40 ng. About 3% are in the ideal range of 50 to 80. Don't forget, lifeguards in August have levels close to 150 ng.

Anyone with elevated calcium in the blood has a medical problem that needs medical attention. There are several causes.

Something I tell people when I speak to them about vitamin D, if the ONLY thing that vitamin D did was prevent osteoporosis and increase bone strength, that would be enough reason to get the level to an ideal level. But it does far more, with cancer and autoimmune prevention, and muscle weakness. I am not aware of any formal studies being done with ALS and vitamin D as an additional treatment, and from the comments on this blog, it doesn't seem that the participants in the blog are aware of any such studies.

Robert Baker MD

[lydia]

This is really fascinating, thank you for posting it. My GP put me on vitamin D and I am embarrassed to say I didn't really take it seriously but now I will definitely resume it. Thanks again,

Lydia

[Big Mike]

Originally Posted by rcbaker200

Out of the 1700 25-hydroxy vitamin D tests, every one has been paid for by insurance, including medicare and medicaide. I know that because if it didn't get paid for, the patient would complain to me. Also I have several friends who are on medicare, and they get the blood test paid for 100%, just like any other blood test is paid for. I also have patients on medicaide only, and they get it paid for. Also Horizon Blue Shield of NJ has always paid for my tests.

Now every blood test has to have a diagnosis code associated with it. If a patient is known to have a low vitamin D level, I put 268.9.
If the patient has osteoporosis, I put 733.00
Osteopenia - 733.90.
If none of these apply, if the patient has had muscle pain or inflammation of the muscle, I put 729.1, myositis. (Vitamin D insufficiency has been proven to be associated with muscle pain or soreness.)
ALS is 335.20. However I cannot take it for granted that medicare will accept the need for a level just with that code. They haven't read the latest research.

The full retail price of the 25-hydroxyvitamin D level is $200. But what do the insurance companies pay the labs? In most cases, but not all, they have a contract with the lab and knock down the price to about $50. I mention this so noone will feel guilty that they are costing their insurance company a great deal of money.

An additional note - I have run across situations about a dozen times in 5 years where a physician will tell his patient "Your insurance won't pay for that test." It is an incorrect statement usually told to the patients because the doctor has no clue as to the prevelance and importance of vitamin D deficiency. Also there is always a possibility that the person who answers the phone for an insurance company may not give the correct answer.

As far as repeat studies, initially I sometimes got a repeat in 3 months. Other doctors I have worked with have gotten this too, and again, it has always been paid for (with the repeat test, since a low level has already been diagnosed, the 268.9 code can be used). Now that I have the experience with levels, I rarely have need to repeat a level before 6 months. Once it's stabale at an idieal level, it could be changed to every 12 months.

So there is no misunderstanding, let me repeat:

MEDICARE AND MEDICAIDE AND EVERY OTHER INSURANCE COMPANY HAS ALWAYS PAID FOR A 25-HYDROXY VITAMIN D LEVEL. Final note - it is the total that you want, the breakdown between D2 and D3 doesn't matter. And DO NOT get the 1-25-hydroxy vitamin D. It's a different test and is worthless in determining if Vitamin D is deficiency. About once a year I have seen a laboratory make a mistake and do the wrong test.

Thanks for the info, Dr. Baker. I'll pass it on to my doctor.

[rcbaker200]

Of these recent posts on Vitamin D and ALS, I think one thing that is most important is the fact that 2 people mentioned that an ALS patient had a very low level. I realize it's only 2, but noone has said, "I have ALS and checked my level and is was normal." If 2000 people with ALS had their levels checked, would 2000 people report that their level was very low?

The information on possible etiologies posted by people have been very interesting. Who knows? The answer to ALS may be contained in ALS forums.

I do want to point out one thing. Vitamin D is the only substance mentioned that has can be easily measured. We know with absolute proof that over 2/3rds of Americans have low vitamin D, and there is some evidence that the percentage is higher with ALS than the general population and the levels are lower. We also know for sure that osteoporosis and muscle weakness and many other illnesses are associated with a low vitamin D level. So I would like to ask anyone on this forum. What would keep a person hit with the tragedy of a diagnosis of ALS from NOT getting a 25-hydroxyvitamin D level? What would keep such a person from correcting the level by simply taking the necessary dose of Vitamin D and getting a repeat level, say every 6 months, to ensure it was high enough?

We are aware of the old saying "If it sounds too good to be true, it is." I have revised that saying "In the case of Vitamin D, if it sounds too good to be true, once in a lifetime, it is."

If anyone on this Forum has an idea of what can be said to motivate ALS patients to take these easy steps, I would love to hear your ideas.

Robert Baker MD
Primary Care Internal Medicine

[chrismaya]

Just "putting it out there," that my mom, who died from ALS, had LOW VITAMIN D!

[SandraD]

Just an FYI-- please remember that over two-thirds of Americans have low vitamin D, as Dr. Baker stated. I would hate to think that everyone who has a D deficiency is suddenly going to think they have ALS. that would be a lot of people!

[Big Mike]

My hydroxvitamin-D serum levels just came and it was 40 ng, which is in the normal range. However, I had been taking 5,000 I.U. of Vitamin D-3 per day for a few weeks prior to the blood drawing, so I am sure I was deficient prior to the supplementation. I will continue my current level of intake.

[indigosd]

Dr. Baker, THANK YOU so very much for taking the time to post this information! Vitamin D3 is now being given to pregnant women to prevent birth defects. My Husband has not had his level checked but I give him 2000 IU q day. I also take the same amount and I found D3 gummy bears for our son. My Dr. actually did do a D3 level on me when I went for my annual physical and I was LOW, I was taking 1000 IU q day at the time. I am going to request that they do a level on Web when we go for his next visit in December. I read somewhere that the reason we are deficient in Vit D3 is directly related to the Surgeon Generals advice that we all use SUNBLOCK to prevent skin cancer. It also said that Vitamin D3 was made by the body due to sun exposure-creates an oily substance on the skin that is then absorbed. IF you spend time outside in the sunshine [without sunblock] and then come in and shower you wash most of it off! Have you heard this and what is your opinion? I so wish that we could have some type of a informal gathering of information of symptoms etc on the forum. There has to be something in common with everyone! It doesn't look like the CDC ALS Registry is going to be up for some time and knowing the Government, it will take forever and a day.

[halfin]

I just had my Vitamin D tested and it was 35, within the normal range as defined by the lab, although of course there are those who recommend much higher. I used to be very active and was out in the sun a lot even in winter (which is mild here), so I imagine it was fine back then. For the past couple of months I've been taking 2000 IU of D3 per day. Maybe I will see about getting the 5000 IU supplement mentioned in this thread, especially since I don't get outside much any more. Sounds like it wouldn't hurt to get my level up a little, but I don't expect it to do too much.

[Marti]

Parathyroid??? I was diagnosed with hyperparathyroid...That is what controls your calcium..which control your Vitamin D...My endocrinologist told me my level of my calcium were not high enough to take out...also my vitamin D at the time was at 12...now that is weird.
http://tpals.org/meagher1.htm

[tdamess]

Originally Posted by halfin

I just had my Vitamin D tested and it was 35, within the normal range as defined by the lab, although of course there are those who recommend much higher. I used to be very active and was out in the sun a lot even in winter (which is mild here), so I imagine it was fine back then. For the past couple of months I've been taking 2000 IU of D3 per day. Maybe I will see about getting the 5000 IU supplement mentioned in this thread, especially since I don't get outside much any more. Sounds like it wouldn't hurt to get my level up a little, but I don't expect it to do too much.

35 is not good to me what scale did they use as in 35 --- on a scale of ...35 - 42 .....that wiould make you boarderline you would need more...

[tdamess]

[QUOTE=Marti;101412]Parathyroid??? I was diagnosed with hyper parathyroid...That is what controls your calcium..which control your Vitamin D...My endocrinologist told me my level of my calcium were not high enough to take out...also my vitamin D at the time was at 12...now that is weird.
Turning Points in ALS - Dr. Lance Meagher's ALS theory & treatment[/Q ........................................ ..........................the growth on the parathyroid would be taken out i do not believe you have to remove the parathyroid o you could find another doctor who will give you a second opinion as by a holistic approach the level should not be 10 but , that is acceptable in main stream medicine mine is at 9.4 a lot of people do not even believe they have a problem till the growth is removed then they feel the difference... you have been told you have it read up on it see if any symptoms fit you ....best of luck

[Marjorie R. Wilcox]

I don't have ALS. My husband is 2 years into his dx. I had severely low vitamin D tested and was on 50,000 units per week for one month and 1000 per day since, for one year now.

He is doing fine on no meds and no supplements. I only take vitamin D. We are 61 and 62. He has very slow progression.

Just heard on the news that if you take doses of vitamin C you are asking for cateracts bigtime. Eat well... stay well. Ingested vitamins are the very best. ( That means eat a balanced diet.)

We don't believe that the lack of vitamin D can cause ALS. We believe that Rick's exposure to Agent Orange in Vietnam (two tours) caused his.

[indigosd]

Well H--L! That explains the fact that I am getting CATAracts!! I have taken 1000mg of Vit C for decades.