• Vitamin D levels

    Asked by TXHills on Tuesday, April 1, 2014

    Vitamin D levels

    Has anyone had a doctor recommend getting your Vitamin D levels checked?

    40 Answers from the Community

    40 answers
    • dxdiva2's Avatar
      dxdiva2

      Yes, my internist had my vitamin D level tested and I was low so she put me on vitamin d3. She also recommended taking vitamin b12. Maybe it was just in my head but after a few weeks (before BC diagnosis) I was full of energy.

      over 6 years ago
    • lilymadeline's Avatar
      lilymadeline

      Oh yes that is common for doctors to do, especially oncologist.

      over 6 years ago
    • lafsa's Avatar
      lafsa

      i have been taking a vitamin d supplement for years... whenever my primary doc orders blood work she check my d level..

      over 6 years ago
    • karen1956's Avatar
      karen1956

      My onc does not check Vit D levels...but I'm seeing an "anti-aging"/"bio-identical hormone specialist - she does not Rx bio-identicals for me since I'm a survivor (she is too), but does labs for many things and she has checked my D levels several times....She has me on 5,000iu/day but I was on higher dose for awhile cuz my D levels were low....She also has me on Vit K, magnesium, calcium all for bone health......

      over 6 years ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      My skin doctor told me to have my vitamin D levels checked but my level was normal. I started to take vitamin. D on my own because it can help your immune system . I believe there are studies underway in Canada to find out if high doses of vitamin D can fight certain types of cancer but as far as I know no definite conclusions have been reached.

      over 6 years ago
    • tam4givin's Avatar
      tam4givin

      Mine was very low before I was diagnosed. The D2 prescription made me very sick as it does most people, I have been told by several docs, yet they still try to get me to take it! My levels did not go up on it. I researched, went to the store and got D3 and my levels came up. It came up faster o the white pills than the yellow gel caps. MY B12 was just a little low, the doc told me to take double the highest one the store had. My level went up twice as high as top of high level and did not help at all with fatigue. :( I think the D3 helps with pain some.

      over 6 years ago
    • ld_105's Avatar
      ld_105

      Yes, more than one doctor. New research indicates need for it. After throidectomy levels low so take one pill a day. My endorsement said doesn't matter if d3 or not, 800iu per day but usually take more.

      over 6 years ago
    • savingrace's Avatar
      savingrace

      Like Id_105 say, research is now showing levels of Vit D are much lower in people these days.
      My PCP checks mine regularly and I'm on one 5,000iu pill a day.

      over 6 years ago
    • OwlSearch's Avatar
      OwlSearch

      My doctors haven't recommended any supplements for me. But after ending up in the ER a few times, I decided to take a proactive approach. I have been on steroids for months & read that my vitamin D levels could be affected. So, I'm taking vitamin D. I take zinc because my immunity still feels compromised. And I'm taking probiotics because I've had yeast/fungal issues in places like under my boob & under arm, on surgery side only. I list these meds when I swe my doctors & feel like it helps. Wow. I'm sorry. After all my blah blah, I noticed that I missed the question. I had continuous blood checks over the past year, so no recommendations were made to me.

      over 6 years ago
    • Myungclas' Avatar
      Myungclas

      You didn't mention Tamoxifen, but taking it depletes your body's stores of Vitamin D and Magnesium. Mine apparently got so low that I developed a heart arrythmia. Taking D and mag supplements completely cleared it up. So weird how everything in the body works together.

      over 6 years ago
    • Gabba's Avatar
      Gabba

      I see you live in Texas...here in the Northeast it is recommended that EVERYONE have their vitamin D level checked as part of their annual physical due to the increase use of sunscreen and our distance from the equator! As a pediatric nurse practitioner we checked children's levels starting at age 8 (a bit of an arbitrary number, some use 10)... We were always amazed, especially by the teenagers who were almost depleted. Interesting question...no one loses by having their level checked!

      over 6 years ago
    • JudyW's Avatar
      JudyW

      I live in Southern California, was a baseball umpire, and my son plays baseball, so I'm outdoors a LOT. My surgeon checks my Vitamin D every time I see her because it's so low. I assume it's from the radiation treatment. I take an extra 5000 IUs of Vitamin D every day and eat 1/2 an avocado (good fat) because it helps the Vitamin D assimilate into the bloodstream more easily. Still not where it should be, but it's better.

      over 6 years ago
    • fiddler's Avatar
      fiddler

      low vit. D is epidemic in the Pacific Northwest, so we get ours checked because everyone is low. I take 10,000 units daily just to stay in the "normal" range. Low vit. D has been linked to cancer, although I haven't read the studies.

      over 6 years ago
    • fiddler's Avatar
      fiddler

      P.S. The doctor gave me 50,000 units a week for 3 weeks to jump start the vit. d, but it didn't work so they did it again. Be careful of how much you take - it's rough on the liver.

      over 6 years ago
    • jojo2's Avatar
      jojo2

      My Onco said I was his only breast caner patient ever to have an adequate Vit D level. I was on it because my family had 2 with H1N1, in 2009 and it's said to help fight the influenza virus. Living in the North we also have minimal sun exposure for many months. I have a co-prescription for it with calcium to protect bone health while on Arimedex.

      over 6 years ago
    • debco148's Avatar
      debco148

      Yes, most doctors are ordering it now for women especially. Although, I've heard for some men as well. Low vit D is more prominent in those that get breast cancer. I've had both my GP and Onc consistently check. Mine was low and I take 5000 IU/daily now. This was recommended my a good nutritionist and my onc agreed on the dosage. I've seen research now that says when your d is low, it could be sign of disease. But, my onc thinks it is still the right thing to do, so I do it. Mine went up after getting sun last summer and taking 1000 iu, but then in Fall it was down again. So I faithfully take the 5000iu. Also take magnesium as it keeps my aches from AI in check. Also, have to say, no colds or flu in over 3 years taking D, but also eating very healthy. I don't think we get enough sun anymore and using lotion to protect from harm also makes it worse. So, my onc says go 10mins in sun without the lotion and then lather up after that. But that 10 mins of sun is important.

      over 6 years ago
    • walkingon's Avatar
      walkingon

      My Vitamin D level was checked when I started on anastrozole last month (surprise: normal!, but for years I have taken 1,000 mg and get more in multi-vitamin and calcium pills) Here in gray, high lattude Pacific Northwest virtually all women I know take some supplementation, but this was the first time I had been tested despite my known osteopenia.. My oncologist explained that anastrozole has the possible side effect of further bone loss, and that vit D as well as calcium may be protective. He plans to test it a few times yearly as he said levels fluctuate with seasons and with other causes.

      over 6 years ago
    • TXHills' Avatar
      TXHills

      Thank you for all the information, folks! With my personal and family medical histories, looks like I should get it checked and have it regularly monitored. Will call my PCP this afternoon. I appreciate the help!

      over 6 years ago
    • BabsWon's Avatar
      BabsWon

      I had my vitamin D level checked at my last physical exam. It was 23 and I had been taking 2,000IU per day. My PA recommend I double that to 4,000IU per day and have the level checked again in a few months. I have osteoporosis in my spine and am on Arimidex and take a weekly dose of Actonel to try to prevent any more bone loss. I will see my oncologist in May and will see if they can add a vitamin D level check to the blood work I have done before I see him. I am also scheduled for a Dexa Scan to check my spine & hips.

      over 6 years ago
    • CAL's Avatar
      CAL

      Not too much to add. My oncologist checks it every 3-4 months (more often during chemo) but finally in February (13 months post chemo and 11 months post radiation) it was high so they reduced my dose to 1000 mg/day from 10,000 mg /day (plus Spring has finally arrived and I am actually getting some sunshine.) During chemo it got so low (it was also the dead of winter with little sunshine) that they put me on 50,000 mg 3 times per week for 3 weeks and that brought it up to normal. I have been on Arimidex since April 2013 so I like jojo2 am on it as well as 1000 mg calcium per day to try and stave off the osteoporosis. I had a baseline Dexascan in March , 2013 and need to schedule my annual one soon. Because my oncologist has me on a no dairy, no meat, no sugar, no white flour diet, I have to work to get both Calcium and Vit D from other sources.

      over 6 years ago
    • TXHills' Avatar
      TXHills

      I wondered because a recent study found a strong correlation between aggressive breast cancer and low Vit D levels. It just came out. My cancer was moderately aggressive. My mom bad sis both had very low levels. Due to radiation and my mom having skin cancer, I do avoid the sun as much as possible. It seems wise to get it checked, which is happening tomorrow. It's an easy an inexpensive fix that could really help me out, if it is low.

      over 6 years ago
    • Karenhi's Avatar
      Karenhi

      Interestingly I just started a 7 month clinical trial looking at Vit D3 with aromatase inhibitors. It is investigational so they are looking at several things: effects on dexa scans (bone density), estrogen levels, blood levels of the A.I., as well as musculoskeletal symptoms and pain/stiffness typically associated with the A.I.s. Since it is double blind, I won't know if I am
      getting the high or the low dose of D3.

      over 6 years ago
    • Mellowoman's Avatar
      Mellowoman

      At various times throughout my chemotherapy, I have become deficient in Vitamin D, magnesium and protest am and have ended up hospitalized for these issues. I know take 5000iu of vitamin D and prescription potassium on a daily basis and have all those levels checked every time they do lab work. Better to stay on top of it as the side effects from these deficiencies can be very serious.

      over 6 years ago
    • CAS1's Avatar
      CAS1

      I was dx'd with low vitamin D just a few months before my LC dx. It should have prompted a pet scan.

      over 6 years ago
    • Marisol's Avatar
      Marisol

      So far no vitamin tests on my blood at all. I only had some iron supplement for 2 weeks because of slightly low haemoglobine.

      over 6 years ago
    • Net's Avatar
      Net

      I have been on Arimidex since 2006 and my Vit D has been deficiant for years. I take the 30,000 once a week but doesnt seem to help it. My Onc didnt suggest anyother supplements. I wonder if I need to start some?

      over 6 years ago
    • tam4givin's Avatar
      tam4givin

      Net, are you taking the prescription D? It is D2. It did not work for me and many other people. Research D3. It works for me, and does not make me sick like D2 does to so many.

      over 6 years ago
    • sweethart2912's Avatar
      sweethart2912

      My internist checked my levels of D and they were extremely low now I take calcium with 400 iu of D and a D3 also.

      over 6 years ago
    • TXHills' Avatar
      TXHills

      Karenhi, I would be very interested to know the results of the study, when they are available. I also have osteopenia in my hip and am on Fosamax. Only half done with the Arimidex. What are the high and low doses used in the study?

      over 6 years ago
    • Karenhi's Avatar
      Karenhi

      TXHills: The low dose of the D3 is 600 IU, the high dose is 4000 IU (though that doesn't sound real high compared to what some here talk about). We all start with a 1 month "washout" period with 600 IU. Everyone takes 500 mg of calcium carbonate the whole time. I had no idea Vit D was thought to possibly help with pain or joint symptoms (I guess we'll see, eh?) The results will take awhile to analyze and write up, but I am very interested as well.
      I have been on Femara for 3 months, and I was borderline between osteopenia/osteoporosis before I started BC treatment, probably from all the cortisone shots I have had for my back. I have almost 5 years left (or are they saying 10 yet?) and my oncologist wants me to do twice yearly infusions of Zometa for 3 years (same stuff as Fosamax, just stronger dosage I think). This apparently is because there is a survival benefit for post-menopausal women regarding prevention of bone metastases in addition to improvingr bone density. However, I have so far refused because of my recent spinal fusion surgery, and no on can tell me how that infusion will interact with my issues. There is an osteoporosis forum where I see several threads about the severe and sometimes permanent side effects, which has scared me off somewhat.

      over 6 years ago
    • walkingon's Avatar
      walkingon

      Karenhi: Very interesting posts and we all await the results! I, too, am "borderline" for osteoporosis but no additional durgs have been proposed for me until further DEXA results -- probably not for two years (I just started anastrozole). But I have taken the proactive step of enrolling in an excellent osteopenia/osteoporosis prevention/treatment exercise class that teaches us both what to do (lots of balance, posture exercises and modified abdominal stengthening) and what not to do (mainly forward bends and twisting motions). I also take yoga, but now I heavily modify some poses. I asked three PTs if I needed to so so, since I am not actually currently osteoporotic and have had no problems so far, and all three said yes: "Why take the risk?"

      over 6 years ago
    • Karenhi's Avatar
      Karenhi

      Do you have a source to help you figure out how to modify your yoga poses?
      I hope to start back up soon--I think yoga helped me get in shape after chemo and before my back surgery!

      over 6 years ago
    • Net's Avatar
      Net

      tam4givin the prescription is D2 50,000 taken 1 a week.

      over 6 years ago
    • tam4givin's Avatar
      tam4givin

      Net, that is what I was taking, did not bring my numbers up, so the doc had me take 2 a week, then 3, then 4, then a 50,000 unit every day. He wanted me to do it for 3 weeks but it made me to sick. I switched to D3 and started coming up right away. I only have to take 2000 (yes 2000, not 20,000 units) of D3 a day. I do not take magnesium, calcium, or any of the other things some say you have to take. They are all normal on my blood tests.

      over 6 years ago
    • Judt1940's Avatar
      Judt1940

      Internist checked Vit D. Low, low. Have extreme osteoporosis and spinal stenosis. On D 3 5000 daily. Chemo has played XXX with my neuropathy. Came thru chemo but wonder if can come through neuropathy. Think all women should be on Vit D.

      over 6 years ago
    • Katefarrington's Avatar
      Katefarrington

      I regularly have my Vit D checked now after a random check a few years back indicated that my level was 10. Basically kids coming across the Atlantic in the hold of a ship, not getting much if any sunlight, would have a Vit D level of 10 and would get rickets based on that level. (I don't know if someone has already touched on this. There are so many comments, which is great, but I haven't read them all). My endocrinologist put in on supplements which worked as my level increased to 28 (normal is 30ish). Unfortunately, I found myself fighting other medical problems and the Vit D supplement fell my the wayside. I was put on so so so many other meds and it was not totally necessary - right? Not a good idea. Just found out couple weeks ago during my yearly cancer search, that my D had again crashed and burned. This situation is almost circular. Thanks to a number of different causes, I live in a lot of pain. Others that deal with this know that it is very very hard just to get out of bed. Going outside can be a mere miracle, therefore none of that good sunlight bestowing that glorious Vit D. Even though I know the consequences, it is so very hard to get outside. I'm starting my supplement again but as many of us know, artificial-ish supplements don't work as well as the organic one. However, saying that, considering the alternative, I am thankful to have the pill. I have been so exhausted which may have something to do with my depressingly low level. Perhaps as my level increases, I hopefully will have enough energy and drive to get my butt outside. One strange thing did occur a month back; I see a psychiatrist to monitor my Cymbalta rx. If you don't know, it is an ssri antidepressant but works wonders for chronic pain sufferers. If you know someone fighting daily excruciating pain, mention this. I am never surprised how many doctors don't cross over to a antidepressant that has been proven to work on pain, and work amazingly well. Didn't know how well it worked until my med cocktail for pain was changed and it was not included. Boy, was I suffering. Any who, this same doctor when asked if he would check my Vit D level said he didn't think Vit D mattered and he didn't check for it. He felt it was a lot of hype in the medical world. He is not an older doc that still follows 1942 protocols but someone my age (40s). I had to wipe the carpet fibers off my chin as it bounced off the floor. I knew I had other appts coming up with sane doctors so I just let it go. But are you kidding me. My last bone-density scan showed I was at a -2 at the important areas of bone. Needless to say, I lost A LOT of respect for him and I may look for another doc to monitor my Cymbalta (write the scripts basically). Sorry to ramble but I have had some serious issues with my D. Take it or even better go outside, preferably in the morning. Namaste. Kathryn in Mobile, AL

      over 6 years ago
    • Net's Avatar
      Net

      Thank you tam4givin I switch to D3, Will be waiting for my next blood test to see the results.

      over 6 years ago
    • carmein's Avatar
      carmein

      I was already taking vitamin d a 1000 units a day. It was the only vitamin my oncologist said I could keep taking

      over 6 years ago
    • Anamaria's Avatar
      Anamaria

      Hi tam4givin, my onc told me to take calcium and D3 prior to my first chemo treatment session in March. I hope things work out for you. The popular answer is D3 and I can only speak from my experience. That my blood test have been normal since I started taking D3.

      over 6 years ago
    • punalei's Avatar
      punalei

      You need sufficient calcium and vitamin D3 to help keep your bones healthy and prevent bone mets. As my oncologist said "Don't give it fertile ground."

      about 4 years ago

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