Vitamin D

merrywinner
merrywinner Member Posts: 626 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello all. I've been working since last Sunday and alternating between day and evening shifts so haven't had a chance to check in. So glad to finally have the weekend off. As you may remember I went to Mayo last Friday and all was well but my MD wanted to additionally check my vitamin D levels. Got a call on Tuesday letting me know I was severely deficient with a level of 11. I think the normal is 25-80 or so. Depends on where you look. Anyway, has anyone else had this problem? The nurse who called told me he wants me to take 1000 iu daily. At the time of my appointment my MD said that a Lymphoma conference in December confirmed that Lymphoma patients in treatment do better when vitamin D levels are normal. Not knowing at that time that I was low we didn't talk about it much but of course now I have lots of questions. I know there has been a big push over the last couple of years regarding checking patients vitamin D levels because so many people are low and the tie in seems to be muscle and bone pain among other things and I too have the sore hips and legs that I see so many people here echo. I guess I will find out but wanted to share just in case. Mary

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    Vitamin D
    Mary,
    So glad you posted about the vit.D. We learn so much from each other on this site. As far as the leg,hip,knee pains that so many suffer from,no one would have known it was a wide spread thing among us unless someone would have brought it up. They bought it up and I am so glad they did. Now we all know how common it is and possibly some things we can do about it. Thanks again,John(FNHL-1-2A-5/10)
  • merrywinner
    merrywinner Member Posts: 626 Member
    #3
    COBRA666 said:

    Vitamin D
    Mary,
    So glad you posted about the vit.D. We learn so much from each other on this site. As far as the leg,hip,knee pains that so many suffer from,no one would have known it was a wide spread thing among us unless someone would have brought it up. They bought it up and I am so glad they did. Now we all know how common it is and possibly some things we can do about it. Thanks again,John(FNHL-1-2A-5/10)

    Hi John
    Ya just never know when there may be an answer that helps someone else too but please remember to check with the Doctors since I am not one. I know checking vitamin D levels is big right now for a lot of reasons and hey it can't hurt. In doing that I surprisingly find myself in the severely low category and this can cause a host of health problems that may or may not have symptoms that would alert me. I'm just glad it was checked so I am aware and the solution is easy enough. I can probably look forward to decreased muscle and bone pain, more energy and stronger bones to name a few. I will let everyone know what I notice. Oh and one other interesting thing, my CT scan did show what were called..quote"patchy sclerotic areas in pelvis primarily on left with some smaller areas on right, with impression being: sites of old treated lymphoma areas with no activity.(in other words scarring) Hip joint is normal. Huh, I do have most of the soreness on the left with a little bit on the right. So who knows but, it's curious.
  • KC13167
    KC13167 Member Posts: 215
    #4
    Vit D
    Mary,

    Please make sure that they recheck your Vit D level in 6-8 weeks. My original value, about 2 years ago, was 9. I took over the counter Vit D for a year and it only went up to 18. A few months ago I had a recheck and it was back down, so my Family Practice MD put me on prescription Vit D (50,000u per week) for 3 weeks. My recheck value was 30, so back on over the counter Viit D with a recheck in another 8 weeks.

    The last article on Vit D and lymphoma that I read indicated that those with Vit D levels within normal range, had better long term outcomes. But, that they weren't sure if the Vit D was a causal factor. I have read that colon CA is less prevalent in folks with Vit D levels that again, are within normal limits. Vitamin D is a fat soluble vitamin and as such, if too much is taken, it can have adverse reactions...moral of the story, the follow up lab work is important. I can't believe that I waited 1 year without requesting follow up lab work. I guess the DLBCNHL got in the way!

    Kellie
  • merrywinner
    merrywinner Member Posts: 626 Member
    #5
    KC13167 said:

    Vit D
    Mary,

    Please make sure that they recheck your Vit D level in 6-8 weeks. My original value, about 2 years ago, was 9. I took over the counter Vit D for a year and it only went up to 18. A few months ago I had a recheck and it was back down, so my Family Practice MD put me on prescription Vit D (50,000u per week) for 3 weeks. My recheck value was 30, so back on over the counter Viit D with a recheck in another 8 weeks.

    The last article on Vit D and lymphoma that I read indicated that those with Vit D levels within normal range, had better long term outcomes. But, that they weren't sure if the Vit D was a causal factor. I have read that colon CA is less prevalent in folks with Vit D levels that again, are within normal limits. Vitamin D is a fat soluble vitamin and as such, if too much is taken, it can have adverse reactions...moral of the story, the follow up lab work is important. I can't believe that I waited 1 year without requesting follow up lab work. I guess the DLBCNHL got in the way!

    Kellie

    Hi Kellie
    Thanks for the info. I did ask how long until I was rechecked and the Nurse said they would recheck it at my next visit and every visit after that. At work my patients sometimes respond to the over the counter dosing but some of them are requiring the 50,000u dose that you mentioned. I can always throw my PCP in the mix if needed. Did you notice any differences when your levels went up? Mary
  • truckingalong
    truckingalong Member Posts: 445 Member
    #6
    merrywinner said:

    Hi Kellie
    Thanks for the info. I did ask how long until I was rechecked and the Nurse said they would recheck it at my next visit and every visit after that. At work my patients sometimes respond to the over the counter dosing but some of them are requiring the 50,000u dose that you mentioned. I can always throw my PCP in the mix if needed. Did you notice any differences when your levels went up? Mary

    My experience with Vit D deficiency
    Hi, Mary and all,

    Before I had the HD diagnosis, one of my first symptoms was nerve/muscle pain in my entire body several evenings every week (got it under control with Ibuprophen) and found out that I was deficient in several vitamins: Vit. D, B 12, and iron. So I was given 50,000 units of Vit. D, shot of B 12 and iron supplement then I felt better with energy BUT that delayed in finding the diagnosis 5 months later!! Anyway, so the answer to your question is yes - Vit D does help but I took other vitamins as well. At end of October, I had it checked - it was still normal even after receiving chemo treatments. I guess I need to have it checked again.

    Thanks,
    Liz
  • onlytoday
    onlytoday Member Posts: 609 Member
    #7
    Vitamn D
    My PCP is ordered it and I haven't heard what the levels are yet. It's been over a week so I think I can assume they are okay, but then again you know what they say about assuming!! haha So I'll call.

    I have been taking over the counter suppliments on my own after reading an article about it and how most of us are deficient. Esp. in the winter when we don't get as much sun.

    There sure is a lot to stay on top of. Thanks for the info!

    Donna

    NMZ NHL stage IV 05/10 REMISSION 01/11/11
  • britta
    britta Member Posts: 107
    #8
    Vitamin D
    Hi Mary,

    I was diagnosed with a Vitamin D deficiency a few months before the lymphoma diagnosis.
    My PCP put me on 50,00 twice a week and by the time I went to Mayo, I was at 45, so I went to 1,000 units a day. My onc seemed very interested in the Vit D deficiency and made a big deal of it. As I remember he said there seemed to be a correlation between Vit D deficiency and lymphoma. Now that I think of it, I should have it checked again, maybe that's why I'm aching all the time. Wouldn't it be nice if such a simple thing would take care of all our aches and pains.

    Darlene
  • merrywinner
    merrywinner Member Posts: 626 Member
    #9
    britta said:

    Vitamin D
    Hi Mary,

    I was diagnosed with a Vitamin D deficiency a few months before the lymphoma diagnosis.
    My PCP put me on 50,00 twice a week and by the time I went to Mayo, I was at 45, so I went to 1,000 units a day. My onc seemed very interested in the Vit D deficiency and made a big deal of it. As I remember he said there seemed to be a correlation between Vit D deficiency and lymphoma. Now that I think of it, I should have it checked again, maybe that's why I'm aching all the time. Wouldn't it be nice if such a simple thing would take care of all our aches and pains.

    Darlene

    Yep!
    I will always try the simple things and who knows maybe it will strengthen my health. The deficiency can't be a good thing. And yes it looks like there is some now proven basis for the vitamin D thing. My MD said it was just confirmed at a Lymphoma conference this past December so who knows. So off I go now to buy my vitamin D, which is odd for me, as I am not a big fan of taking stuff (this coming from a former chemo patient! lol). Mary
  • merrywinner
    merrywinner Member Posts: 626 Member
    #10
    onlytoday said:

    Vitamn D
    My PCP is ordered it and I haven't heard what the levels are yet. It's been over a week so I think I can assume they are okay, but then again you know what they say about assuming!! haha So I'll call.

    I have been taking over the counter suppliments on my own after reading an article about it and how most of us are deficient. Esp. in the winter when we don't get as much sun.

    There sure is a lot to stay on top of. Thanks for the info!

    Donna

    NMZ NHL stage IV 05/10 REMISSION 01/11/11

    Your Welcome Donna
    I guess I'm not expecting magic or anything, but do need to treat the deficiency. Who knows maybe those supplements protected you and your levels are OK. I do know that he told me if my levels were in normal range he would want me to take 400u daily and if low 1000u. So it's the bigger dose for me. The nurse who called said she takes 2000u daily but I decided to follow his orders for now. Take care...Mary
  • JoanieP
    JoanieP Member Posts: 573
    #11
    merrywinner said:

    Yep!
    I will always try the simple things and who knows maybe it will strengthen my health. The deficiency can't be a good thing. And yes it looks like there is some now proven basis for the vitamin D thing. My MD said it was just confirmed at a Lymphoma conference this past December so who knows. So off I go now to buy my vitamin D, which is odd for me, as I am not a big fan of taking stuff (this coming from a former chemo patient! lol). Mary

    Mega prescription Vitamin D
    I had my vitamin D level checked and it was 33. I was told 30 was low normal. The Oncologist put me on 100,000IU's a week. In two months it was up to 42. I am continuing to take it until he says it gets to be 60. It gives me energy!!!
  • miss maggie
    miss maggie Member Posts: 929
    #12
    Vitamin D
    Hi Mary,

    Maybe twice a year my internist gives me a blood test. This was before I was DX with NHL I was extremely Low on Vitamin D and Iron. I started on Vitamin D3 1000mg a day, (must take Vitamin D3) and iron. All my levels are now normal.

    I don't over dose on vitamins. I do take a few daily:

    1.Centrum Silver mutivitamin, multimineral
    2. Chewable Vitamin C 600 mg
    3. Fish Oil Omega-3 1200 mg.
    4. B6 100 mg.

    I also have one yogurt a day, and 1/2 cup pure cranberry juice, not cranberry cocktail.

    Just be sure you take Vitamin D3, not Vitamin D only

    Love Maggie DX 09/09 extranodal marginal zone B cell NHL remission Jan 2011
  • KC13167
    KC13167 Member Posts: 215
    #13
    merrywinner said:

    Hi Kellie
    Thanks for the info. I did ask how long until I was rechecked and the Nurse said they would recheck it at my next visit and every visit after that. At work my patients sometimes respond to the over the counter dosing but some of them are requiring the 50,000u dose that you mentioned. I can always throw my PCP in the mix if needed. Did you notice any differences when your levels went up? Mary

    Levels
    Mary,

    When my Vit D levels are up I feel much better than when they are low! When they are low, I find that I have decreased energy and I can be moody and feel sad. The first time my level elevated I could not believe the difference! The positive effects were noticeable with in the first week.

    Good luck with your level, I'm sure you will feel the difference too!

    Kellie

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