D3 levels

[Mary Jo]

Anyone know anything about D3 levels. What is a GREAT reading....what is a good reading.........and what is a poor reading.......? Mine was 39 and doc. said that was fine.

Not sure if I only want "fine.!"

Thanks,

Mary Jo

[CoachPlayWin]

I'd like to know what D3 levels are. Also, I'm a bit in the dark about several things. Maybe someone can help. I am nearing the end of my Taxol/Herceptin treatments, and a wondering what I should ask my onc to do about seeing if I'm ok or not. He's never done any scans, or tumor markers or anything. How do I know if I've "won?" or if I should be concerned? When I asked him about them at the beginning, he said that scans sometimes give people a false sense of security, and it wouldn't change his course of treatment anyway....and I accepted that. But now I think I'd like some more information. What should I ask for???

[nitewind]

I know what you mean, Coach. Sounds like we have had similiar treatment. I finished my year of Herceptin in December. Doc said he will see me again in February. I had to change my appointment to make it earlier as I started becoming short of breath and found that I didn't have the strength to even lift my arms, just all around didn't feel right. My onc has never been big on scans and markers and such, he says you can't trust them. I want to know if I "won" too. I know that no one can guarantee us anything but I could sure use some encouragement. I've changed my appointment to next Monday the 13th. My oncologist is a good doctor but not much of a people person, I wish I could make him understand that this is my life and of course I'm concerned. He refers to my problems as "complaints", I refer to them as "concerns". Why can't they understand that we've been thru a lot of emotional stuff as well as physical and that a kind and encouraging word might do a world of good? Keeping my fingers crossed for next Monday and I'll keep my fingers crossed for you too. Sounds like we've been thru the same things.
Hugs

[Vi Schorpp]

Go to this website and type in D3 levels. Hope this helps!

http://www.labtestsonline.org/index.html

[Bill]

Sorry MaryJo, I'm no help here with the D3 levels. I'll check with my "people" soon as I can, though, but by then you'll probably have your answers. Coach and Nitewind, it seems like maybe you should have scans done more often. Coach, have you had any done? I'm not sure what that false sense of security BS is., pardon my tone, but everyone needs to know if the tratment has worked or is working. By scanning and checking tumour markers periodically, (not too soon, because some scans can't differentiate between dead tissue, scar tissue or active tumour) that's how you gauge the efficacy of a particular treatment. I'm confused. How else would you know if it's working? my wife had ct scans every 8 weeks or so, a bone scan every 6 months. Maybe someone more knowledgeable should chime in. Be strong and demanding in your treatment. I don't like the fact that the word "complaint" was used. They are "concerns", and very valid and real concerns. If you don't feel comfortable with your oncs., if possible, seek a second opinion or switch. We switched several times. One onc. told my wife over the phone when discussing scan results that the questions she was asking were "beyond her education level" and she wouldn't understand the answers, and in answers to my wife's concerns about weight loss while on chemo. she told her "it wouldn't hurt you to lose some weight". We kicked her to the curb immediately and the next doc. was wonderful! Sorry, I got rambly, but when I hear about mean-spirited people or seemingly uncaring docs. it pushes my "protective" buttons. Thoughts and prayers to you all, Bill

[CLTann]

Being close to the medical community, I would like to interpret many health providers viewpoint. Not that I agree with them, but just to bring to focus how the patient-doctor relationship may be viewed from the other side.

To many (most) doctors, the patients are not ones they would like to be friends. They most certainly want to keep a distance with them, and avoid to become emotionally involved. We are just another numbers on their list to see for the day. We are their sources of income. Therefore, their priority is quite different from our priority. Good doctors certainly try to give the best to their patients, but rarely go all out to exhaustively find the extraordinary avenue to do research and comb medical journals for the best solutions. Nurses are generally one grade better in human relation with patients, but they answer obediently to their masters.

As you may have detected, I have a very low level of respect for most doctors. They never consider your time is just as important as theirs. They know we are anxiously waiting for test result but your worry is rarely a concern for them. Very few doctors will greet you on the street or open door for you. They were taught that way in the medical schools.

We therefore must put up with their god-like attitude since there is no other viable alternate. Too bad that they know that too. Have you looked up at the divorce statistics among doctors?

[madubois63]

Wow, this thread really makes me realize how truly blessed I've been. First off, Coach - I hope you've had at least a MUGA scan prior to starting Herceptin. Your oncologist should be monitoring your heart. I understand that some tests can give false positives and some docs don't like to give too many tests, but there really is no other way to know if your treatment plan is working. Tumor markers/blood tests can't give you the answers you are looking for. If your onc doesn't want to give you these tests, it is truly time to find another doctor!!

Please, please remember you are the consumer. You hire the doctor and have the right to fire him/her too!! You have the right to call up your insurance company and have them help you find another doctor in your plan if you are unhappy. Sometimes, it is as easy as switching to another doctor in the practice or driving a little further up the road. I know some of you are afraid of making waves, but would you really keep bringing your car back to the nasty repair man, give commissions to the *itchy sales clerk or leave your kids with a rotten babysitter????

I have a bc oncologist, a leukemia oncologist and a transplant doctor. Each of those doctors come with a large staff. Everyone of those doctors and their staff love me. They have all cried with me. They hug and kiss me when when I come in and leave because they all really care about me. If one of these doctors hasn't heard from me for a bit, they call me just to say hello. If you are not seeing a doctor that will take the time to research your treatments or listen to your "complaints," then it is time to find someone that will.

[Mary Jo]

Dear Ann,

Wow. I'm not sure how your post came under my "D3 Levels" thread but it did and I feel I must comment.

I respectively disagree with you but am sure you have seen what you have written about over and over again. I am thankful that I have not and can honestly tell you that my "team" is the best. Readily available with an answer - an encouraging word or any kind of help I am in need of. That is everyone - my breast cancer surgeon, my oncology nurses and my oncologist. As a matter of fact at my last bone scan, not even 24 hours after the test, I was so stressed that I e-mailed my oncologist (his e-mail address is included on his card). Not 15 minutes after my e-mail was sent my caller ID showed "The Medical College" was calling. (he must have been teaching that day and was in his office at the college) - anyway,not 15 minutes from the time I hit "send" he was on the phone telling me "you are fine," in a very compassionate, caring voice. Mind you this is not even the oncologist I saw all through treatment - she moved on - this is my new one and my last visit was only the 2nd time I've seen him. Also, it has been well over 2 years since my surgeon did my first mastectomy - over 1 year for second - we still converse via e-mail on occasion - if I have a question I think about regarding my pathology - and lately about possible reconstruction - asking her opinion - referral - etc. She too, ALWAYS gets back to me within the hour - always respectful - always helpful and always caring.

So, you see Ann, although you have obviously had bad experiences (and I am so sorry for that) I have had nothing but positive experiences and I can't say enough about the team that cares for me.

Love & Peace,

Mary Jo

[Mary Anne in TX]

Like Maryann and Mary Jo, my experience has been fantastic! Couldn't have fought so hard without them! ma

[Chelee]

My experience has not been good at all when it comes to both oncologist's I've had...nor my surgeon. People say just change...that is not easy when your *stuck* in an HMO. That said I have nothing but the highest praises for the chemo's nurses, all the tech's the run the scans, lab techs and you name it. There are WONDERFUL people where I go and I think the world of them...but as far as my surgeon and onc I'm nothing to them. I'm just another patient. I can SO relate to what Ann is saying and thank goodness the majority of you women have wonderful doctors and nurses to care for you...that's how it should be. But believe me...there are many of us like Ann said that don't have that...and its not for lack of trying.

Chelee

[mslinda]

My oncologyst and surgeon are the greatest. My onc. is such a compassionate person. She has always had time for me and answered all my questions to my satisfaction. The only one that I no longer see is the radiation oncologyst. That's another story, but my med. onc. said that she could do for me whatever he would have done. There was a dislike from the very beginning on my part. So I feel like I am blessed also.
Linda

[CLTann]

The relationship between a patient and a doctor is a personal matter. I will not comment on how wonderful several of you had such superb liaison with your oncs and/or surgeons. I work in a large hospital and meet patients and doctors of various kind every single day. Your few positive report will not sway my conclusion as stated earlier. Basically, I like people, all types of people, but I just have so much I can take from those self claimed gods. My own onc is a gentle person, but not a friendly person. He never answers my phone calls or faxes. Even his nurse does not answer my calls, although on their recording, they said all phone calls will be answered before the end of day. The head nurse used to be quite friendly before she was promoted and transferred from the hospital staff. During my onc visit, the onc would rise after exactly five minutes. In protecting my bill of rights, I wrote a list of questions and handed to him as soon as he enters the patient examination room.

[AlaskaAngel]

My turn...!

I've seen both kinds. The person who found my bc here in Alaska is a nice enough person but even though she continues to practice legally and is a product of Stanford's medical training, I don't consider her a surgeon and won't call her Dr.! Ann's description applies very well to her. I was just $ to her. On the other hand, I fully appreciate the surgeon I had in Seattle for consistently being completely professional. We aren't close but I respect him deeply for his manner in taking care of patients, and his straightforward manner. He is also wonderful with teaching patients.

The onc I started with in Seattle (who is considered tops in the field) never provided any information or education of any kind, and would consistently dodge specific questions. He never even told me I tested HER2+++. He would always hedge about whether or when I was supposed to return. He would never let a nurse address the smallest questions. It took a half hour of asking and insisting one time before he would let me talk to a nurse instead of him. He is a busy person and I don't mind at all if he has someone else do the talking in his place, but when he won't communicate and balks at letting anyone else do it for him, then there is a problem. I think he cannot relate to me as a patient. I saw 2 other oncs after completing treatment, and when I asked for their Adjuvant projection for me, BOTH of the projections were based on obviously incorrect personal information they entered. (I know docs are busy, but how hard is THAT to get right?)

My PCP here is very hardworking and professional. We aren't buddies even though we work together. I know plenty of times when he has gone the extra mile for patients and staff.

I do my part. I show up ready for exam on time, fasting if I think it might help for labs or imaging, with helpful records or imaging in hand. I schedule far in advance if at all possible, don't expect to be treated as a special case, and I don't try to discuss things that I didn't schedule the appointment about. I also pay my bill promptly because he is providing a service to me.

AlaskaAngel

[Barbara2]

Hmmmm. Relationships with our doctors are very important, (mine is probably "average") but I'm going to head back to the original topic. Does anyone know what your D3 levels are or have you had them checked?

It's a test of the levels of Vitamin D in your system. I recently asked to have that done, and expected the results to be a high number because I take around 1600IUs of Vitamin D daily (that is included in the daily calcium and multivitamin.) To my surprise my level showed 37 in a range of 25-80.

The test was called "Vitamin D 25-hydroxy." It tested Hydroxy D2 and D3 serum, then totaled them together.

[Chelee]

Barbara, Your right, Mary Jo asked about D3....and the thread went off in another direction. I think I will start up a new thread on the other topic.

But back to D3 I know I went to an Endocrinologist and he tested me for my Vitamin D levels. When my results came back he said mine were GREAT! But I just requested my records from his office and I see he wasn't being up-front with me like ALL my doctors seem to be.

Optimal levels the way I read this for both D3 & D2 is 30 and above. I told my Endo I hoped to be on the upper end and he said I was. But now that I have my records I see I BARELY made it. My D3 is "29" and my D2 is 4. So I'm NOT real happy with what he told me. Hope that helps.

Chelee

[Chelee]

I just dug out my lab results and here is what it says about the reference range. (However note that I'm sure some labs will vary a bit.)

It says, "Item Annotations"
25-OHD3 indicates both endogenous production and supplementation. 25-OHD2 is an indicatior of exogenous sources such as diet or supplementation. Therapy is based on measurement of Total 25-OHD, with levels <20 ng/mL indicative of Vitamin D deficiency while levels between 20 ng/mL and 30 ng/mL suggest insufficiency . Optimal levels are >30 ng/mL.

Noted at the top is the Reference Range:
20-100

Chelee

[Mary Jo]

Thanks guys for getting back to topic. Haha! I had to laugh everytime I'd read another post on "doctor relationships" - kind of felt like we were playing that game where you whisper something in someone's ear and see what the story ends up to be by the end. LOL! Oh well - it was interesting and nice to hear about other's relationships with their docs too.

Anyway, back to D3. Yep, I was told there was a range too - a large one - and I almost would prefer to be at the top of that range HOWEVER I don't necessarily know if that means better. Again, like I said, mine was 39 and I was told that was "fine" although, also as I said before, I'm not sure "fine" is what I wanted it to be. Think I would have preferred the word "excellent."

Oh well.............................................. ............... Doesn't sound like a topic any of us are well versed in.

Hugs and Happy Monday,

Mary Jo

[Linda]

Hi Marejo:
I have some input on your D3 thread -- I'm not sure if this will show under your thread or start it's own new one.
Less than a year ago, my onc started checking the Vit D level of all her bc patients, using the same levels you listed as a standard. My level was just under the low end of normal, and she wanted it on the high end, as she thinks high Vit d level could be protective against recurrance. This is the only "alternative" thing she tracks, by the way. I started with 3 or 4 thousands units a day and also making sure to get some sun 9 (I live in the not sunny NW). When I was still on the low end of normal, she raised my d3 supplement to 7000 units a day. I am now up to the high end of normal (almost 80) which makes her very happy. She says high calcium would be the only bad side effect, so I've stopped calcium supplements.
I see her again in March and can ask questions if you'd like. By the way, I was stage 3a and am NED at almost 3 years.
Linda

[Mary Jo]

Hi Linda,

Thanks for the input. It was much appreciated. Like I said mine was 39 and I think I'd like it higher than that. The doc who told me 39 was fine was the guy (doc - internal med) that I check in with every year here in my town. So, what would he know about cancer and "D3" studies. So, yes, share away PLEASE.

Question....why would your calcium levels go up just by taking D? I know D has something to do with calcium - absorption - but wondered why unless I took more the level would go up on account of taking D3? Did I misunderstand?

Thanks again.

Mary Jo

[Bill]

I'm sorry about my rant in my earlier post and derailing the intent of Marejo's post, I just got all worked up.