help with vit D levels

coonie

Vitamin D level went from 25 in May to 39.1 this time. My doc told me to quit taking the D daily and just take the 50,000 IUS once monthly, but I'm thinking the way I got it up to 39 is BECAUSE I was taking it daily too. I'm afraid if I quit, it'll go back down again????

MariannaLaFrance

I just got my levels retested, and I went from an initial level of 32 to 69! I took 2 weeks of the Vitamin D2 50,000, then switched to Carlson's Vit D drops. I take between 4,000- 6,000 daily, plus I get a little bit of sun each day on my bike ride.  I am ecstatic that my levels have increased so much, and I really feel a lot better. Now working on the rest of the nutrition puzzle with my new nutritionist..... supplementing with Magnesium (needed for calcium absorption), Taurine and B6.  Changed diet as well-- no sugar, wheat (gluten) or dairy for 4 weeks.  Hoping I can make it through the sugar withdrawals!

MariannaLaFrance

JO, that was not a side effect for me. I am not sure why you would be having that as a side effect, but definitely check out the Vitamin D Council's website.... maybe you could ask their doctor-in-residence about it and he could tell you why that's happening. He seems to be an expert in Vit D, and has a Q&A forum on the site.

juli0212

Funny how every doctor/person gets different medical advice, isn't it?   :O

I took the D2/50,000ius for 12 weeks, then a break of NO vitamin d at all for 6 weeks, then retest.

I had a clear mammogram, and waiting for results of the bone density which we do yearly due to hyperparathyroidism/parathyroidectomy/calcium issues.

I am interested in the vitamin d drops, thank you all for mentioning them.  They seem to be more potent and probably more easily absorbed?  I know I'll be on a large maintenance dose.

Reading about side effects of AI's, I am NOT looking forward to stopping the tamoxifen for them!  But being post-menopausal since Oct. 2006, Monday my oncologist probably will be switching me, we waited as long as possible due to bone effects (no bone issues right now thankfully).

Thanks again everyone...you're all very helpful!   Enjoy...to be HOTTTTT again...ugh...no sun for me though!   (Migraines)    ~juli

coonie

Jo----------it'll be interesting to see what your vit D level is now. It may all be in my head, but I think I'm not feeling as good either since I stopped taking it daily. Since I'm only at 39 I think it can't hurt to take at least 1000 IUS a day. I see my onc again in December and just feel like I can't overdose on Vit D that quick.

Juli-----it IS weird about the difference in opinions of doctors.

ananda8

Coonie,

Everyone is different in how they metabolize D.  Some on this board have had success with D2 once a week.  It did nothing for me.  I got my level up with 4800 IU D3 a day (over the counter supplement) and when I reduced my intake to 2800 IU D3 per day, my level dropped. 

Some on this board do fine with 2000 and some take 10,000 IU.  Each one of us is doing so under the care of a doctor.  In my opinion, it is the blood test that should be the key.  I had to tell my doctor I was going to take 4000 IU.  I went back for a retest 90 days later.  Now I retest every 6 months.

Best wishes for getting your levels up.

juli0212

coonie:  I was taking 1000ius of D3 for over a year, and became very deficient.  In my mind, that is simply not a large enough dose, but that could just be for ME.  As others have said, everyone metabolizes vitamin d differently.  I do not believe the D2 helps, but we'll see after 9/8 after testing and NO vitamin d for 6 weeks after the 12-week dosing of D2/50,000ius.  It's interesting and also a bit frustrating!   I will be having a LONG talk with my endocrinologist, as my oncologist wants the level to be as close to 70 as possible (was at 30 last time).   All my best to everyone.

~juli

elimar86861

I was just thinking about retesting, may I ask what most of you are doing about that...

Is it better to retest every three, four, or six months?  Should it be done summer & winter (which I suspect would be hard to compare, but I guess results could be compared to the previous summer & winter?)  

juli0212

AH drat...my bone density came back with an almost 9% loss since 2005.  My PCP called, not my endocrinologist.  He feels we need to protect the bones with a weekly drug.  I called my endocrinologist and left a message, as we feel he should be the one to follow this.  Drat...too early for bone loss, and still on Tamoxifen cus my oncologist feels the AI's would complicate bone issues (parathyroid issues/calcium).   Double-Drat...:(    Ah well, we'll see what endocrinologist says, waiting for a callback.  I doubt he'll want to wait til Vitamin D testing 9/8. 

Sorry, just got the news, so kinda venting here?  Having cancer, parathyroid, vitamin d deficiency issues sure gets complicated!  PLUS:  Add daily, debilitating migraines to the mix, and lots of things that make them worse (read:  supplements!)    LOL....sorry all....will get it all figured out!

ALL my best....oh, and elimar, I think it's best to test every 6 months depending on what D3 you are taking?   Or best to ask your doctor if you're under doc's care for vitamin d deficiency?

THANKS all for listening (did I give ya'll a choice?  LOL)    :O    ~juli

elimar86861

No, I am not under a doctor's "care" for this because I was the one to ask my MedOnc for the test, which he then misinterpreted the results of, and I am quite positive he has no plans to retest me, so I will have to lead the interval testing myself.

Are you all trying to achieve a constant level of Vit. D, or is it more natural to have the number drop after the winter months?  I don't mean drop below the current advised range, but if I get to 80 after spending months in the summer sun and it drops, say to 60 or something after the winter months, that's o.k. isn't it?  That seems like a natural fluctuation of the seasonal cycle.  What I am getting at is, do you (any or all of you) use MORE supplements during the winter, or just stay on your regular dosage throughout the whole year?

chrissyb

Elimar, I have been using Vit D for about ten years now and I stay on the same dose all year round.

juli0212

elimar:  I DO hear you on doctors and what 'they' feel is important.  It is up to us to manage our own health, and I'm glad you do so also.  Since I don't get into the sun (migraines), I was on a maintenance dose of constant yearly/daily 1,000ius of D3, to which I became deficient again.  We are testing again 9/8 after my 12 weeks of the 50,000ius of D2, which I don't believe will change the levels that much.  Will have MUCHO discussion with my endocrinologist, maybe a conference call is warranted between him and my oncologist now with bone density loss issues.

You are right though, most people don't get enough vitamin d from the sun.  Best to you~~~juli

(Endocrinologist's office called, doc is on vacation this week...will see onco on Monday anyway, and will discuss with him, maybe he can call endocrinologist as it does affect whether and when we switch from tamoxifen to an AI)

Anonymous

Elimar, I'm like you and supplementing with D3 (3500 mg/day) on my own.  I had to ask my MedOnc for the Vit D test as he did not know of it's importance and when it came back at 32 he said it was in the normal range - because he doesn't know any better.  I will have it tested again when I see him end-Sept and see where it's at.  Need to arm myself before then with info to present to him about the benefits.

juli0212

Hi Jo~

I never felt any different on the high dose of D2, or the 1000ius daily of D3.  I feel the same, tired/fatigued.  I have more head pain when on the high D2 (50,000ius), but that's not a surprise for me, who cannot tolerate many meds or supplements, even pain meds make my head pain (migraine/vomiting) worse.  I now have bone loss of 10% in the lumbar spine, and don't feel any pain in any of my joints or bones.  No bowel problems, sick to stomach comes with the migraine territory, nothing new there for 30+ years daily.  I DO hope you feel better when on a good maintenance dose of D3...let us know your results!  GOOD LUCK!   ~juli

elimar86861

patoo, I was at 39.  I take a total of 2800 mg/day, not counting whatever I have added to that by purposely getting 15-20 minutes exposure of natural sun most days over the last few months.  Probably will ask for re-test at next MedOnc visit in Nov.  I am hesitant to take a larger dose until I see what this amount has accomplished since (let's say it together) "everyone's different."

olivia218

Well I have been working on my vitamin D level for the last few months and it is lower, I was at 18 and now I am at 10.  It is really frustrating.

Anonymous

olivia218, what kind/dose are you taking and how often - daily, weekly?  Are you working on it with a doctor or on your own?   10 is very low and would seem to me to be dangerous - please take care of yourself. 

ananda8

Elimar,

I tried reducing my dose this summer when I was getting sun in the garden.  I went from 4800 IU per day of D3 to 2800 IU per day.  My levels dropped.  Although I was getting well over 15 minutes of sun per day, it did not offset the reduction in my supplements.

I often wonder where these pearls of medical wisdom come from.  Who decided that 15 min per day was enough?  Was there an assumption that I would be standing in the full sun at high noon while naked?  All doctors say this but where is the science for the statement?

Anonymous

notself - they gotta say something!  I asked, probably a few pages back or maybe it was even on another thread, if driving with the sun beating down on my shoulder and forearm for 30 minutes would give me the benefit of Vit D from the sun?  You might be right - probably have to stand outside, butt naked at high noon, but is it 15 mins, 20 mins, 45 mins?  Oh, don't forget the SPF-60 on the face.

elimar86861

notself, I think you had mentioned that earlier, about your levels falling.  Maybe it was someone else.  When I finally do get tested again, I will be able to figure out if I need to take a higher dosage.  I do not want to take more now, because I am conducting my own "trial" with the 2800/mg., so I don't want to change up the dosage until tested again.  I don't really know how to factor-in the sun.  I have left myself some wiggle room to take a higher dosage, since I am at the low end of what most of the women on here take for their supplemental dosage.

On the dosage I am taking, the main difference I have noticed is that my sleep has improved a little.  Of course I am also interested to take it for the beneficial role it may have for women with B/C, but I have no way to check if it is actually doing something along those lines or not.

[I was going to go off on a tangent about why I feel we all (myself included) hop on the "flavor of the month" supplements bandwagon (like wasn't it just EFA's and flax oil before this?) but decided to spare everyone instead.  Oh, if only I had a nickel for every time I gave someone my two cents worth.]

ananda8

elimar,

I totally agree about being on a band wagon.  The impact of nutrition on health is just beginning to be recognized by the medical community.  Everything is tentative.  All we can do is read everything and use ourselves as experimental subjects.  But, like good researchers we need to read the literature, test our hypothesis and analyze our results. 

aussieched

Hi everyone,

I am just responding in regard to all your comments regarding levels of Vitamin D. My vitamin D level was 21 when I was diagnosed 3 years ago at the age of 52.  It has taken me 2.5 years to get the level to an acceptable limit.  My Onc said he would not be happy until it was at 100.  So  after all the surgeries, I finally got myself motivated to get out walking in the sun, mainly at the beach, most days in summer, and when I can during the winter.  I also work full time, so always sit out in the sun for my 30 minute lunch break even during the middle of winter. I started taking 2000 IU of vit D3 a day, however it was taking such a long time for it to rise, I increased it to 3000 IU a day and continue to take that. Over many blood tests it gradually rose 10 to 15 points each time I had a blood test, with it finally now being 116 when I last had it taken in June.  So it is not always an instant fix, and can take a lot of Vitamin D and a lot of sun to get to the required level.

juli0212

Hi aussieched:  WOW!  That is terrific news and a higher level than I'd have thought.  You give good wisdom/advice here, that it does take a terrifically (word? lol) long time to raise our vitamin d levels, it sure does.  It's good to hear.  Like you, when dx'd, my level was at 17.  Waiting to see what level is now, but I'm liking your dosages, as well as what Elimar wrote about maintaining her dosage for now.  All good food for thought, thank you again all.   ~juli

ananda8

Ausieched,

Is your doctor using nm/l as a measurement (nanomoles/liter) or ng/ml as a measurement (nanograms/milliliter)?  110nm/l is around 35-40ng/ml.  I forget the converion ratio.

If you are being tested in ng/ml, how does your doctor arrive at the ideal level of 110ng/ml.  I would love to know because I thought the level should be around 50-60ng/ml.  If I am wrong I want to correct it by showing some research to my doctor.

aussieched

Hello again notself,

Looking at my pathology results, here in Australia, they measure vitamin d in units nmol/L and they quote that the range 51-140 is an acceptable range.  As stated before, when diagnosed I was 21, and my general practitioner was happy when I reached the level of 60, however my Onc, said no, I want it to be at least 100, so on I continued with my last test being the first test to be over the magic 100.

Looking at the bottom of the  pathology report it states the following categories for vitamin -

Mild Decifiency 25-50 nmol/L

Moderate Deficiency 12.5 - 25 nmol/L

Severe Deficiency  <12.5 nmol/L 

I have not only had trouble trying to elevate my vitamin D, but also having lots of trouble trying to decrease my cholestorol and blood pressure.  Never ever had a problem at all until I started Femara.  They both shot up through the roof.

Hope the above information will be of some help to you.

Regards 

ananda8

Thank you for your explanation.  I was concerned that there may have been confusion because of the two types of measurements. 

100ng/ml is the very top of the range for Vitamin D3.  100nm/l is mid range.  Your doctor is recommending that you stay in the mid range so for those who are measured in ng/ml (nanograms/milliliter) that level would be 50-60ng/ml.

weety

Yay, I went from 33 to 57ng/ml in the 5 months since I started taking 5000 D3.  I had to ask my regular doc for the initial test and the retest.  My onc doesn't seem to care (or know much) about vitamin D.  When she saw my latest result of 57, she said, "oh, you have plenty of vitamin D."  Since being on this board, I knew that really was just mid-range, but I didn't say anything.  I'd like to get up to about 70.  I wonder how much longer that will take?

squidwitch42

Hello,

 I thought I would post an update on my Vitamin D challenges (for research purposes I started at 4 in March, two months later made it to 16, two months later and I am at 22.  I have kept with the D2...50,000 units per week.  I do get sun when I walk my dog....have been trying to allow those rays to hit me.

I have noticed a decrease in my bone/hip pain...However, my pain MD started me back on regular Ibuprofen 600 mg two to three times a day..so cannot say for sure if it's the D.  Now here is a TMI example (brace yourselves...) I think I am a bit stronger in my thighs...or I feel more "stable." Getting up and lowering from the toilet was more precarious in the past..felt weak and had to grab on to things.  I notice I was stronger and had better balance, and have not done any specific exercises for this part of the body.

I check in a lot to see how we are all doing on the Vitamin D front...I also am curious...my Oncologist is not the one addressing this issue. I, through my education here, asked for my levels to be drawn.  I was shocked at my results! My Onc has not been proactive in regards to diet recommendations, Vitamin D and breast cancer...I feel it should be part of every new Cancer patient's intial blood work.  Are you all being monitored by your Oncologist?

and one more thing..my Pain MD absolutely believes low Vitamin D contributes to muscle pain, and exacerbation of underlying pain syndromes.  So at least he is supporting me.

Jo, how are you feeling ?

Traci

mbtlcsw01

Traci, I can't say that I know any of this for sure, but I have been on Femara for 15 months and got to where I could hardly walk, had something called pseudo gout and was so scared about what was going to happen to me.  I was on lots of ibuprohen, too for the pain.  I had my vit D level checked for the first time around this time and it was 34.  I started taking 1000 ius a day (onc only wanted me to take 200) and had my levels checked again several weeks ago.  It is up to 54.  I have almost NO pain anymore.  a bit stiff sometimes, but nothing in comparison to what it was like before.  I live in Florida and do get sun, but not enough to think it makes that much difference.  I think you may be on to something with pain issues and vitamin D.

squidwitch42

Mary,

Luckily, there has been a lot of info in the news lately regarding the potential relationship between Vit D and Cancers...and Vitamin D/immune system functioning.  The ladies here have been very proactive in sharing info...Also, as you know, pain is a powerful motivator...and a lot of Pain management specialists have been looking at some of the underlying issues with chronic pain, fibromyalgia, etc...and studies targeting pain patients have shown a larger percentage of Vit D deficiencies as compated to the general population. 

I am soooo glad your pain is almost gone!  Just wonderful....I love when people's pain is managed or gone...pet peeve of mine for people or animals to suffer.