help with vit D levels
Comments
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Carolyn: Good luck with the tamoxifen. I was on it for 3 1/2 years (due to chemo-induced-menopause, was totally pre-menopausal before chemo)...now just switched in past month to Aromasin (for POST-menopausal women). I had very little trouble with tamoxifen, hot flashes/night sweats (but menopausal too--so that would've happened anyway)...once in great while had a calf cramp when walking, but can't complain! Hope you have few if any s/e's. Good for you on educating yourself...and yes, the Vitamin D subject can get real confusing, but as most agree here, it's DEFINITELY important...and finding out many of us were very deficient when dx'd with cancer...trying to get levels up takes time. Good luck with it all~~~juli
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Hi all, Just had fun reading up on the last few days' posts...haven't been here in a while. Someone asked about the difference in tests for D2 and D3, in kindergarten language....well here's perhaps an 8th grade version...Just know that D2 and D3 are very similar to eachother chemically, and so they can generally do a lot of the same things in the body BUT not exactly the same things, and unfortunately its not fully understood how different their actions are. Your body naturally makes the D3 form. D2 is made by mushrooms and packaged into pills. The appropriate blood test for vitamin D is for the form of it called 25(OH)vitD, and the test measures the vitD2 and vitD3 parts separately then adds them up for the total. So, if you see total 25(OH)vitD, that's 25(OH)vitD2 + 25(OH)vitD3. As can be seen in this forum, docs differ on their belief in the importance of D3 instead of D2. My personal feeling is that since our bodies make D3 and are used to utilizing it, and D3 is readily available at low cost in most places, then I'm going to supplement with D3 rather than take a chance with something that might not be same.
As for the recommended levels, in case some are not aware, I'll mention that the basis for the recommended minimum (32 ng/ml, I believe), is what's been well-established for bone health. The importance of vitamin D for bone health is well-established through decades of research, including the blood levels needed for optimal calcium/bone homeostasis and related biology. The unfortunate thing is that dosing of supplements (or sun) to get any one person to at least that min level is highly variable, as everyone's story here demonstrates. The only way you can be sure you're replete is by having yours tested.
In the last decade or two researchers are finding that vitamin D is active in all sorts of places in the body not apparently related to bone health so there's a new appreciation that vitamin D is probably important for the health of these other tissues, which then leads to the supposition that a deficiency might be associated with all sorts of diseases. My reading of the literature (and I know others have other interpretations), is that the research in most of these areas is pretty early and the associations are suggestive but not definitive yet. In addition, even where there appear to be associations, the "minimal" level needed for health in those tissues has not been established like it has for bone health. It may be that 5 ng/ml is fine for some biological fxns, but 50 or 100 ng/ml is needed for others, we just don't know. So docs who are saying if you're over 30 ng/ml you're "normal" would appear to me to be reporting it based on known data (the bone health data). Many docs are now saying to get to something higher than that (50, 70, 80 or even 100 ng/ml) to have some buffer and that biologically makes a lot of sense.
My pragmatic view is that for everyone here, at the very least we should get to the min known required for our bone health and if one doc won't do testing to be sure then I'd encourage you to find one of your others (onc, endo, GP, etc.) who will. We're all at risk for osteoporosis at the very least and vit D is definitively required to help minimize that risk, regardless of what the docs believe about its importance for BC or other diseases.
Did that turn into a lecture? Sorry if so. Just seemed like all of these things were coming up and I couldn't resist piping in. Happy Wed everyone! CS
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Oh, whippetmom, unfortunately I don't have a clue about your skin issues. (You looked great in LV though!) Nonetheless...good luck figuring it out, and do report back here if you come up with anything. It would seem unlikely that after 2 yrs tamox was the issue, although I do find that the skin on my hands gets dryer and dryer the longer I'm on it so maybe you hit some threshold and something just shut off/turned on/changed suddenly.
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cs: Oh...my skin was parched in Vegas also. But thanks...
you are sweet! After reading Luna's latest link, for me it could be sugar intake. I am really, really bad. I have had this addiction to Good and Plenty candy which started about a two months ago. So this is enough to turn me off G&P, if my daily consumption of same is in any way culprit for my skin woes.Just thought I would share a email exchange with my doctor re: Vitamin
Last year, my Vitamin D levels were at 50 [after a 50,000 i.e. prescription dose regime] My recent tests last month revealed the level is now at 41. I wanted to know why the levels were declining, despite the fact I was taking 2,000 i.u's as a maintenance dose, and I also asked about my D2 results, which were reported as <4.I wrote:
Dear Dr. M:
Would you please look at my recent Vit D test results? It appears as though, despite my 2000 i.us daily of D3, my levels are declining. Could I increase my dosage to 5,000 i.u's daily?
Also, the D2 levels I trust are unimportant? Just wondering...
Thanks so much..Deborah
Her response:
Dear Deborah:
Your Vit D levels are 40 - which is normal. We want them to be over 30 and not at 70. Please continue with vitamin D -2,000 International Unit(s)/day.
Take care,
Dr MSo there you go. These doctors are all over the map with the levels and numbers.
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Oh, and by the way, yesterday I started taking 5,000 i.u's of Vit D daily. Instead of "physician, heal thyself"...it is, "patient, treat thyself."
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unklezwifeonty, thanks for your response, and thanks makraz for yours. Anywayz I thought you guys would be able to get it for sure. What makes me tread with caution is that 50,000IUs of D3 is more than the upper limit of the 40,000IUs of D3 that is recommended on vitamindcouncil, which Ive noticed in my travels seems to be very highly respected, if not THE most highly respected source of info.
In NZ we cant buy it as such, but is only on prescription. Id be dicey on taking it without close monitoring by my GP as I get lots of reactions to things, like the stuff they pumped into me for my MRI.
Luna, yes I may look into this option, but it depends on the number of "hoops" I'd have to jump through to get them here, and I generally dont buy stuff online.
It looks like the name of these I'll be getting (if Im seriously low) are Cal.D.Forte Tablets. Ive downloaded a pdf datasheet on them. ....WHat do you think of this list? I'd appreciate any comments. Mmmm I bet theres some nasties somewhere in here (MSG/Soy/Aspartame/GMO'setc)
QUOTE:
Cal.D.Forte Tablets contain the following excipients:
Castor Oil
Calcium Carbonate
Povidone
Titanium Dioxide
Sucrose
Datasheets 20/06/2009 6
Acacia
Maize Starch
Beeswax
Shellac
Gelatin
Magnesium Stearate
Hydrated Silica
Purified Talc
Prepared Theobroma ( Cocoa Powder )
Powdered Cellulose
Lactose
Sucrose ( Icing Sugar )UNQUOTE
Musical
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Thanks Juli - I hope I have as good an experience as you did with Tamox
And cs7777 that was a great 'lecture' I understood it completely, your very good at writing simply and clearly. Thanks for taking the time.
One more question - does anyone know if it is ok to substitute "Tums" for calcium tablets? I can't swallow those monstrous tablet's but I can take the chewable Tums - aren't they the same thing?
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Dear ECT
I think you are right on Tums. If in doubt, compare the active ingredients on Tums vs. Calcium tabs or check with a pharmacist.
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My pcp says it should be at least 50. I've read normal is anywhere from 30-80. You need to take D3 and you should probably take it with a meal or milk. Don't take it with OJ. My pcp said 5000 iu's a day. Mine has gone from 26 to 34 so I am continuing to take the supplement.
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Thank you, Lindasa,and others, for your input.
I was under the impression last time I saw the endocrinologist, that my Vitamin D status was 68, and somehow presumed it was ng/ml.She said it was a good level.Ha ha......Now I find out that this value was in nanomols (yes, what the heck are they?) So not a good level at all.
I saw her again today and my level is now 108.....nanomols.Acording to the endo, a good level.But NO - I don't think so.It would appear to be at the low end of acceptable, so I will continue in my quest to raise the level.
I have osteoporosis from,variously, chemo, chemopause, aromatase inhibitors and primary parathyroid disease.I have now stopped the AI (after 5 years), had the hyperparathyroidism sorted (adenoma removed surgically), but still have a BMD T-score of less than -2.5 in the spine. The endo suddenly changed her treatment advice after consulting a website called FRAX,and has told me I don't need any chemical intervention (ie no bisphosphonates), and should also forget about supplemental calcium,owing to the latest research showing increased cardiac problems.So basically I have been sent off with NOTHING.....she thinks that 1,000 iu of Vitamin D per day is sufficient.
I am speechless.......
Sam
(edited for typos)
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Hi all, To the gal who was worried about the 50,000 IU doses, thanks for the warning, however, know that people taking the 50,000 IU doses are almost always taking them once per WEEK or even once per MONTH, not daily. Unfortunately that bit often is left unsaid. Its very common for docs to order a 4-12 wk repletion regimen of 50,000 IU 1x/WEEK (or sometimes 2x/wk, or 1x/month) to get someone who's deficient back into a good range. (It doesn't always work, unfortunately, but that's another issue.)
Sam, you point out an important issue here about the different units used for measurement, both ng/ml and nanomol/liter (nmol/l), and it's critical to know which units your meas are in to know if you're in a good range! The conversion between them for 25(OH)D3 in the blood is a factor of 2.496, that is, multiply ng/ml by 2.496 to get nmol/l, e.g., 30 ng/ml = 74.9 nmol/l. Sam, this would mean your 108 nmol/l is equal to 43.3 ng/ml, which is considered in the normal range although you'll have to decide how high you want it to be above that. (Someone asked what nanomoles are...fyi, "mole" units are just a different way to measure mass that's useful in chemistry.)
Whippetmom, I take more than my GP said too. After my 50,000 IU 1x/wk repletion regimen I went to ~ 5000 IU/d instead of the "max 2000 IU/d" my GP recommended. Her reasoning was that there was good data to demonstrate safety up to 2000 IU/d, but not for higher doses. But my reading suggested 2000 IU/d wasn't going to be enough so I did 5000 IU/d anyway, and continue to (& I'm now seeing a different GP who doesn't object, nor did my onc's PA although she noted "it's a lot"). Interesting about the sugar/good&plenty's and your skin. I hope you're right - let us know!
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Here is an interesting (and disturbing) story of how an osteoporosis drug ended up in the medicine cabinet of a woman --- healthy, athletic, in her 50's -- who showed slight signs of osteopenia. Sam, I went to a FRAX website and found it there.
http://www.npr.org/templates/story/story.php?storyId=121609815
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Lindasa, That is a powerful story!!! and one that you all should read. Isn't it true that so many helpful remedies, vitamins and therapies are never given serious press, because NO ONE IS MAKING MONEY OFF OF THEM!!! I feel really good about my 3,000iu of D3 per day and will probably increase it when I get my blood levels tested.
Thanks again for some interesting reading. Beth
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From the FDA today::
For Immediate Release: October 13, 2010 Media Inquiries: Karen Riley, 301-796-4674, mailto:karen.riley@fda.hhs.gov?subject=Bisphosphonates Consumer Inquiries: 888-INFO-FDA FDA: Possible increased risk of thigh bone fracture with bisphosphonates Labeling change adds warning about possible risks of long-term use of osteoporosis drugs The U.S. Food and Drug Administration today warned patients and health care providers about the possible risk of atypical thigh bone (femoral) fracture in patients who take bisphosphonates, a class of drugs used to prevent and treat osteoporosis. A labeling change and Medication Guide will reflect this risk. Bisphosphonates inhibit the loss of bone mass in people with osteoporosis. Bisphosphonates have been shown to reduce the rate of osteoporotic fractures -- fractures that can result in pain, hospitalization, and surgery-- in people with osteoporosis. While it is not clear whether bisphosphonates are the cause, atypical femur fractures, a rare but serious type of thigh bone fracture, have been predominantly reported in patients taking bisphosphonates. The optimal duration of bisphosphonate use for osteoporosis is unknown, and the FDA is highlighting this uncertainty because these fractures may be related to use of bisphosphonates for longer than five years. The labeling changes and Medication Guide will affect only those bisphosphonates approved for osteoporosis, including oral bisphosphonates such as Fosamax, Fosamax Plus D, Actonel, Actonel with Calcium, Boniva, Atelvia, and their generic products, as well as injectable bisphosphonates such as Reclast and Boniva. Labeling changes and the Medication Guide will not apply to bisphosphonates used for Paget's disease or cancer/hypercalcemia such as Didronel, Zometa, Skelid, and their generic products. "The FDA is continuing to evaluate data about the safety and effectiveness of bisphosphonates when used long-term for osteoporosis treatment," said RADM Sandra Kweder, M.D., deputy director, Office of New Drugs in the FDA's Center for Drug Evaluation and Research. "In the interim, it's important for patients and health care professionals to have all the safety information available when determining the best course of treatment for osteoporosis." Today's warning follows a March 10, 2010, Drug Safety Communication announcing the FDA's ongoing safety review of bisphosphonate use and the occurrence of atypical femur fractures. The FDA has since reviewed all available data on bisphosphonate use, including data summarized in the American Society for Bone Mineral Research Task Force report. The report recommended additional product labeling, better identification and tracking of patients experiencing these breaks, and more research to determine whether and how these drugs cause the serious but uncommon fractures. Based on the FDA's review, the Warnings and Precautions section of all bisphosphonate products for osteoporosis will be revised, and the FDA will require the inclusion of a Medication Guide to better inform patients of the possible increased fracture risk. The FDA recommends that health care professionals be aware of the possible risk in patients taking bisphosphonates and consider periodic reevaluation of the need for continued bisphosphonate therapy for patients who have been on bisphosphonates for longer than five years. Patients taking bisphosphonates for osteoporosis should not stop using their medication unless told to do so by their health care professional. Those taking bisphosphonates also should report any new thigh or groin pain to their health care provider and be evaluated for a possible femur fracture. Patients and health care professionals should report side effects with the use of bisphosphonates to the FDA's MedWatch Adverse Event Reporting program at www.fda.gov/MedWatch or by calling (800) 332-1088. For more information:
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NM, thanks for posting that. I've been expecting something to come out from the FDA or from Health Canada about this, as I've learned about some of the studies.
I know that osteoporosis is a very serious disease and I've known some patients who have suffered terribly with it. But it doesn't seem valid to put patients with slight osteopenia (including myself in that!) on bisphosphonates, especially when we're consuming calcium, magnesium, VitD etc., getting lots of exercise and eating well. Too many docs just grab the Rx pad instead of talking/listening to their patients and asking the right questions. Unfortunately, they're more inclined to listen to their pharmaceutical salespeople.......
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NativeMainer....WOW! Thank you for keeping up on this! My doctor is trying to convince me to at least take Boniva...but this latest finding sealed the deal for me...[
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I agree with you on that whippetmom. No one's trying to convince me to take any of those yet but I see it down the road. I'll take a scrip for weight-bearing exercise first, thank you very much!
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Musical....seems like too many ingredients in one pill. Does it say how much D3 is in there?
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Re the Biophoshonates....Nativemainer......is that the same thing that I read can cause jaw necrosis? I know one of these drugs does but is it these?
Oh, wait...found this on google......Bisphosphonates and Osteonecrosis of the Jaw - Conditions and ...
Jun 27, 2006 ... Over the past several years, a concept concerning the use of bisphosphonates and the possible association of jaw necrosis (an area of bone ...
www.hss.edu/conditions_14616.asp - Cached - SimilarBisphosphonates: An Introduction
Bisphosphonates have been used commonly for more than a decade for the treatment and prevention of osteoporosis, and are administered in two ways: orally and intravenously.
Alendronate (Fosamax), risedronate (Actonel) and ibandronate (Boniva) are available orally. The former two agents can be taken daily or weekly; the later agent can be taken daily or monthly. These drugs are generally well-tolerated, but a small percentage of patients note upper gastrointestinal irritation.
Pamidronate (Aredia), ibandronate (Boniva) and zoledronic acid (Zometa) are given intravenously. The former two agents are generally given every 3-4 months, and the later agent yearly, for the treatment of osteoporosis. While patients can develop a short-lived syndrome of low grade temperature as well as muscle and joint pain, these agents were, in general, felt to be well-tolerated and beneficial for the improvement of bone density and reduction in the rate of insufficiency fractures.
Bisphosphonates and Jaw NecrosisOver the past several years, a concept concerning the use of bisphosphonates and the possible association of jaw necrosis (an area of bone which has lost its blood supply) has emerged. This entity has been termed "osteonecrosis" of the jaw. Patients with this condition develop exposed bone in the jaw. The overlying tooth often falls out and a nonhealing, often painful lesion remains. Also, an associated drainage tract may be present, connecting the area of damaged bone to the gum surface.
X-rays may initially be normal, but areas of thinned bone (radiolucencies) commonly develop subsequently. Surgery for these areas of abnormal bone (debridement) can increase the size of the involved area. If a patient develops necrosis of the jaw, efforts are made to avoid any dental procedures in that area
Osteonecrosis of the jaw is more common in the lower than in the upper jaw. Although this entity has been termed "osteonecrosis of the jaw", bone pathologists agree that the pathology (disease development) is not similar to the "avascular necrosis," which is classically seen in the femoral head of the bone, often in association with corticosteroid or alcohol use. Necrosis in the jaw seems to be associated with underlying infection.
Assessing the Risks of BisphosphonatesRecent attention of the media to this condition has led to tremendous concern by patients who are taking these agents. Health care workers are trying as best as possible to assess the overall risk and to determine predictors of risk in any one patient. Osteoporosis is an ever growing concern for health providers and, as the population ages, there will be a greater number of insufficiency fractures, which means that more patients who will be candidates for bisphosphonate therapy.
A recent meta-analysis (Ann Intern Med 2006, 144: 753-761) reviewed the literature on the risks of bisphosphonate therapy. Ninety four percent of the cases of osteonecrosis of the jaw occurred in patients receiving high dose intravenous therapy (primarily pamidronate and zoledronic acid). The risks for females was shown to be slightly higher (3:2 female to male ratio). Sixty percent of the cases occurred after dental extraction or other dental surgery. There are less than 20 cases in the world's literature associated with oral bisphosphonate therapy for treating conditions such as Paget's disease or osteoporosis.
Although it is unclear how many cases were not reported, it seems to be quite uncommon, given the large number of patients that have taken these medications.
Assessing the Risks of Bisphosphonate AlternativesThere are clearly no perfect alternatives to bisphosphonate therapy. The Women's Health Initiative Study questions the use of hormone replacement therapy (e.g. Premarin) for the treatment of osteoporosis due to the associated risk of breast cancer, myocardial infarction and stroke. The SERMs (estrogen-like drugs, such as raloxifene (Evista) which have some characteristics different than estrogen, and which do not appear to increase breast cancer risk have been shown to reduce the risk of vertebral fractures, but not hip fractures. Calcitonin is felt to be of minimal efficacy in reducing fracture risk. The bone-building agent teriparatide (Forteo) does reduce the risk of both vertebral and hip fractures; the original study by Neer (NEJM 2001) was stopped early due to study rats developing osteosarcoma. Although this has not been demonstrated in humans, both patients and health care workers still grapple with this concern. On the other hand, bisphosphonates were felt to be a safe treatment for the treatment and prevention of osteoporosis. Millions of patients have used these agents worldwide.
Treatment of Jaw NecrosisWhen avascular necrosis of the jaw develops, it remains unclear how best to treat it. This has lead to the great concern that both patients and health care providers are experiencing. Treatment protocols are being designed; however, they have not been tested.
It seems prudent that all patients should have a dental exam and cleaning prior to beginning bisphosphonate therapy, and regular dental cleaning should continue throughout the duration of use. As infection is felt to trigger this condition, it is hoped that proper dental care will reduce the incidence of osteonecrosis of the jaw.
Discontinuing bisphosphonate therapy for low turnover state of bone may help prevent this condition (one way to measure turnover state in bone is the urinary N-Telopeptide, and some physicians suggest stopping bisphosphonate therapy if this result is less than 10).
If osteonecrosis does develop, there is some thought that acrylic stents (cavity supports) - with or without soft liners - may benefit exposed bone. Gentle surgical debridement (cleaning away of dead areas of bone) may also help, and oral antimicrobial rinses are frequently used as well. Bisphosphonate therapy is generally discontinued if this condition occurs, although there is no data to show that this leads to resolution of the problem.
Weighing the Risks and Benefits of BisphosphonatesAs when any medication is prescribed, the risks and benefits of that medication must be considered. For the treatment of osteoporosis, patients must understand that hip fractures can lead to significant disability and death (e.g., from clots in the lung related to leg clots that develop after fracture), and that multiple vertebral fractures can cause very significant pain and disability. This must be weighed against what appears to be a probable very low risk of osteonecrosis of the jaw. Oncologists treating patients with multiple myeloma and metastatic breast cancer have a different set of concerns, and use of bisphosphonates in the patient with cancer requires that a different set of issues be weighed. In patients being treated for osteoporosis, the consequences of untreated disease, with resultant fractures, must not be forgotten when striking the proper balance.
ConclusionOsteonecrosis of the jaw is a newly recognized condition that we continue to learn more about. The exact incidence and the relation to bisphosphonate use, especially the risk with oral bisphosphonates, still needs more study. We especially need more data on how the development of necrosis relates to the duration of bisphosphonate use. The bisphosphonates clearly reduce the risk of osteoporotic fractures and reduce mortality in many patients with malignancies, and they reduce osteoporosis-related disability and can reduce the risk of mortality related to hip fracture. However, it's worth reiterating that further study is clearly needed. At present, the overall risk associated with the use of oral bisphosphonate therapy for the treatment of osteoporosis appears to be low.
After balancing the risks and benefits, bisphosphonates will likely remain the best choice for most patients with osteoporosis. However, the decision regarding the optimal drug for managing osteoporosis in each patient is quite individual and should be determined on a case by case basis.
Read more on this topic in an ACR Hotline.
Posted: 6/27/2006
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Hi Luna,
"Cal.D.Forte Tablets contain 1.25mg of colecalciferol.
White Sugar coated 8mm biconvex tablet."I see the data sheet is 4 years old, so Im wondering if theres something more recent. Surely???
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There's a lot of discussion going on the medical feild about weather osteopenia is an actual disease state or not. The term is only a few years old, and the bone density levels that 'define' osteopenia were considered 'low normal' a few years ago. So the debate is around the bone density reading and what is 'normal' and what is 'abnormal' and requires treatment. The original intent of creating the term 'osteopenia' was to identfiy those at risk for developing osteoporosis in the hopes that earlier intervention could prevent progression to osteoporosis. The drug companies jumped in with the idea that drugs used to treat osteoporosis would prevent the development of osteoporosis. It's good to see some research being done on the issue and the long term effects of the drugs being used.
Musical--does the data sheet give the manufacturing company's name? The company's website often has more complete and more up-to-date information about things like ingredients.
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Big Pharma jumped on the osteopenia bandwagon when they saw the opportunity for $$$$. Remember, there are many drugs that get developed that Big Pharma looks to market at market segments. When one market segment fails, they just move to the next one..... for example, when Ritalin was developed, it was first targeted at inner city children who displayed "at risk" behavior. When the inner city communities rebelled against it, labeling it a crime against their children, BigPharma moved to their next target demographic: children of middle/upper middle class, with parents of XYZ income bracket, looking to increase their child's success factors. Thus an entirely new "industry" and disease is spawned, with the perfect consumers. Get them hooked young, then you have a "customer for life"..... but that is for another forum, another time. Sorry for the quick rant against BP.
Onwards to Vitamin
My nutritionist is asking me to get my levels upwards to 100. I am hoping to get another blood test drawn at the end of October, as my last levels were 69. He asked me to put 6000 IUs in my water daily, but I've only been doing 2-4, as I don' t want to exceed the upper range, and my body seems to be absorbing it?!? I am wondering what will happen in the winter months, as well. Though I live in the sun belt, I know that my outdoor activity level with level off in Dec/Feb, so possibly might bump my consumption up then. -
SAM: You and I have similar health background. I am currently in the 'normal' range of bone loss (though I've lost almost 10% in 5 years in lumbar spine). My primary doc is doing TONS of research, as he does believe I should be on some kind of bone drug to help prevent further loss. I agree with him, but boy, that is really scary reading about the bone drugs and their possible long-term effects in the body. I will discuss with primary doc (I no longer see my endocrinologist, and yes, Sam, I still have parathyroid issues, but my primary doc and I both believe it's due to vitamin d deficiencies, we'll see if it improves with the increased dose of D3 daily). We with parathyroid disease have our own issues with calcium (what we can and cannot eat/drink). Boy, this is sure a tough subject, vitamin d AND bone health. One really has got to just be their own advocate, work with a good doctor, and do the best we can! ~juli
**As always, I THANK everyone on here for the info provided, very very helpful**
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Hi
What is the upper level of vitamin D3 that I should be taking? I originally had a level of 28 and was put by an integrative doctor, with whom I consulted a year ago, on 5000 units a day My level went up to 40. But in my last test which was this week, I am down to 34. I have recently pretty much cut out dairy so there goes all of that "vitamin D fortified," and I suspect that is part of the problem. Would it be all right to increase it to 6000 or even 10,000. My PCP thought 28 was a fine level, a little low but fine. So this is up to me right now.
Would appreciate suggestions.
Mandy
PS This is anecdotal and not scientific, I have a close friend who is an orthopedic surgeon. He said years ago, he had heard of this "bone strengthening" bisphosphonates. They sounded pretty good and he prescribed them for a few patients who had osteoporosis. Low and behold, they came back to him and said they had lost teeth because of the medicine. After the third patient, he stopped using the medicne and notified the drug company--his theory was that you were trading one problem for another. He felt awful but he said there was no information about jaw necrosis when he first prescribed these drugs.
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Mandy: Wow, more info on the bisphosphonates from an orthopedic doc no less. GEEESH, it's hard to determine the best course of action then on preventing more bone loss...will really have to discuss in full with my primary doc (no endocrinologist anymore--he's been fired due to his lack of knowledge/respect for the vitamin d deficiency, and bone density loss).
I also increased my vitamin d3 to 5,000ius a day, not sure yet what my new levels are, will know in a few weeks. If my levels are NOT increased enough, my primary doc said he'd tell me to increase the daily dose of D3, not sure how much though. Not sure what's the high end range to take daily, but many on here will chime in I'm sure on their experiences. I was also told 1,000ius was PLENTY, and the low D3 levels 'meant nothing'...ARRGHHHHH! This is a tough subject, what do docs REALLY know about the importance of Vitamin D3???? I SOOOOO believe it's part if not THE cause of my parathyroid adenoma, continued parathyroid disease, and breast cancer, not having a family history of either. At least we're bringing it more to the attention of our own doctors, which can only be a good thing. Sorry, I am rambling! ~juli
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Mandy, How much to supplement is always a puzzle because everyone reacts differently to diff amounts and how much you absorb may vary with so many things too. The only thing you know is that if your level is 34 (ng/ml I assume?) then you're on the low end of normal and if you want to be higher you either have to take more, eat more, or get in the sun more (w/o sunscreen). If you have cut out dairy then you may well have cut out several servings of 200-400 iu, which is the typicall fortification amount per serving. If you had no D problems before cutting that out, then it seems reasonable you could add that back in in terms of supplement and be no different than before you cut out dairy. The problem is no one really knows what is a problematic daily dose. But, we can try to triangulate...The medical profession prescribes 50,000 IU 1x/wk (and sometimes even 2x or 3x/wk) doses for months, so even that massive dose at 1 wk intervals isn't toxic. Daily might be another story though. One main issue that's brought up is stimulating formation of kidney stones in some people because of changing your calcium metabolism (which is regulated by vitD), hence the caution with "high" doses. I've read arguments that there's no data showing that even 10,000 IU/day over a long term is unsafe, and I've read arguments that there's no data showing that anything over 2000 IU/day is safe. So conservative people say, no more than 2000 IU/day, and less conservative people say up to 10,000/day. Unfortunately the needed controlled studies haven't been done for various doses. I guess that was a long-winded way to get to my OPINION that you're probably fine raising your dose by one or two or three thousand IU/day as there are certainly others out there (and here) taking 5000-10,000 IU/day and we're not hearing about epidemics of vitD overdose, but you're right to be cautious and you'll have to do it in a vacuum of hard data, unfortunately. The Vitamin D council website has a reasoned discussion of all this - google it and look for the link "Toxicity".
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Hi Juli......It might be worth you looking at the FRAX website (just google the word), and do the calculation.All you need to input is your age, weight, height,BMD score at hip and a couple of other things like smoking,previous fracture etc.It comes up with a graph showing the percentage likelihood of a serious fracture in 10 years.Then it asks you to click on a link to NOGG (National Osteoporosis something -or-other) and it shows whether you fall in the treatment area or not.
I am not convinced by all this, but this is what my endocrinologist used.According to this, even though I have osteoporosis of the lumbar spine,I fall outside the area where treatment would be recommended.She is now saying that the whole thinking of osteoporosis treatment is being re-evaluated, and reiterated the health risks from taking bisphosphonates and for post-menopausal women from taking supplemental calcium.(She says to get it from the diet).So I am left with vitamin D.....and I plan to really up my dosage.
It is a minefield...and ,yes, we have to be our own advocates.
Sam
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Sam, thank you, I will try that site. Yeah, us with parathyroid issues and calcium, no-no for us. Like you, I will continue to monitor the vitamin d doses/levels. Tricky issues with the bone drugs now...ugh. THX! ~juli
It's kind of hard to use the FRAX site, as my BMD is the loss over 5 years. 8.9% decrease in lumbar spine. That is what had my primary doc call me personally, but my endocrinologist said it was not significant. I'm now NOT sure I want those bone drugs at all. Will discuss with primary doc next week when I see him for follow-up/bloodwork--vitamin d levels, as well as parathyroid levels...hoping the PTH improves when the vitamin d3 improves! THX ~juli
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"Musical--does the data sheet give the manufacturing company's name? The company's website often has more complete and more up-to-date information about things like ingredients. "
Hi NativeMainer. Talk about confusing. With this pasted info below, I googled "PSM Healthcare NZ" as my Doc didnt mention D-3-50 caps, but the Cal D Forte Tabs. In the below info it says they are D3 but I can only find "Calciferol Strong 1.25mg (50,000 iu) 12s."
Im confused about the word Calciferol. I thought Calciferol was D2 and Cholecalciferol is D3. Anyway I cant find any links to info. However Im given a tollfree # so I'll give them a call.
QUOTE Pdf info's
High dose vitamin D3 (cholecalciferol) capsules,
consumer medicines information.
Brand Name for capsules: "D-3-50" (There are also vitamin D3 tablets made called Cal D forte tablets).
Generic Name: cholecalciferol (vitamin D3) (KOE le kal SIF e role).IMPORTANT NOTICE - PLEASE READ.
Currently 50,000 IU vitamin D3 tablets and capsules have not been assessed for approval by the Australian Therapeutic Goods Administration (TGA) for use in Australia. This includes D-3-50 capsules and Cal D forte tablets. This means that these products have not been considered by an Australian regulator with regard to quality, safety and efficacy.
Overseas, D-3-50 capsules are manufactured by Biotech Pharmacal of Fayetteville, Arkansas, USA. This manufacturer holds a US federal government manufacturing license and is registered with the US Food and Drug Administration. Cal D forte tablets are manufactured by PSM Healthcare of Auckland, New Zealand and have Medsafe NZ registration.NAME AND ADDRESS OF SPONSOR
PSM Healthcare Ltd - Trading as API Consumer Brands
PO Box 76 401
Manukau City
Auckland
Phone 09-279-7979
DATE OF PREPARATION
June 20th, 2006 -
I'm betting the "Medsafe NZ registration" is similar to the USP or GMP designation in the US. I've googled PSM Healthcare and API Consumer Brands, and can't find a site that lists all the ingredients of the products they make. A phone call is probably your best bet for getting a complete ingedient list. The info from the PDF is, indeed, confusing.
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