Vitamin D dificiency

I was just diagnose with EDS (classical/hypermobil don't recall being given a specific 'type') and was told that my vitamin D was very low. I wasn't given any specifics to what this meant and also I don't know how much to take. I'm having dental issues right now and I think its due in part to the vitamin D difficiency.

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I had low vitamin D and was told to take 2000 mg of D3 one time a day. I took it for 2 months before my vitamin D got up to the low end of normal. I just bought it at the grocery. It was only 1 pill. Good luck. I know low vitamin D can make you really tired too.

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My level was at an 8 so the doctor had me take 8000 i.u. day. until my level got up to 30. I now take 2000 i.u. a day to maintain. I haven't had it tested in almost a year now so wonder what my level is???

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everyone, not just EDS-ers, have low (or extremely low) vit D levels. it has way more to do with our indoor and sunscreen area, than diet. since it has recently been the "hot new" pro-hormone, just about everyone and their cousin is on vit D supps now, from 500 to 5,000units/day. and you, like everyone, should have their levels checked on yearly physicals, and the supps are cheap, even come in gummy bear flavors :-)

a low vitD level did NOT cause or exacerbate your EDS. it is in general healthier to be in the >40 area when labs are checked, but that is true for everyone! we need our bones to be strong! and we want all the other benefits that are slowly being discovered about vitD = the wonder-hormone (sorry, i'm an MD, and at an international bone metabolism conference in 2008, that is all anyone could talk about.. it has finally trickled down into common medical standard of care practice).

PLEASE get your labs checked first and then take the amount recommended by your physician. it does not matter if it is over-the-counter: aspirin is, and the FDA would never ever approve the med now, given its horrendous side effect profile, so you cannot assume that everything over-the0counter is "safe". everyone has a different situation, and, for example, if you have any kidney or liver malfunction at all, you can become toxic.

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I'm going to have to chime in here with NyFrog but disagree too. Vit D deficiency does not cause EDS.  However, deficiency ABSOLUTELY exacerbates EDS.  Absolutely, absolutely, absolutely!!! Deficiency can cause pain and weakness in the muscles and bones ... only two of the many things it causes. How can it NOT exacerbate????? This is not my idea but the answer given when I asked, 'But why is my EDS getting better?" after agressive treatment.  The question was posed to a clinician and researcher of Vit D (30 years) and the reason there is a buzz about Vit D nationally and internationally.  

Dispatchninja: Your in Boston where the head of a committee of the endocrine society just release updated recommendations on Vit D.  See my recent journal entry.  It supports the NyFrog's recommendation of >40.  HOWEVER, there's a bunch of careful selected recommendations that almost seems contradictory.  This is because of a political struggle caused when the IOM formed a committee to review the literature on Vit D and make their own recommendations.  This wasn't just for intellectual fodder; it was released to the public.  When the Vitamin D Council (headed by an activist MD) challenged the committee, legally, to release information relevant to the release of their report, they refused.  This included release of industry affiliation.  So the Endocrine Society formed their own committee, headed by the aforementioned clinician/researcher) to establish proper guidelines.  Have you heard about this in the news as much as the IOM report? No.  And that is very telling.   

After the IOMs release, the committee dissolved... gone, no longer an entity.  So if you think you are getting the correct scoop when your doctor starts treating you for D deficiency, well think about all the infighting going in (there us a reason for this). See for all literature on it:

My journal entry of the E Society's report is conservative.  5,000 is many times used to just maintain a level or necessary to get to a level.  Toxicity is rare but if you have other conditions going on, you want to be under a physicians care so you are properly screened (which is a conundrum for most PCPs).

Vit D deficiency us just the tip of the iceberg. We've been told to up calcium way too much.  Calcium can be very detrimental to the body in levels when there us a supply the body can't use.  Vit D helps with that as with other things... But I'm digressing

Dispatchninja, you've could have collagen issues going on and you need to see a bone metabolism specialist. Cracks in the teeth, common when fillings put in, are destabilized when the bone underneath softens.  (it had happened with mine.) THAT is why you need to see an MD.  Also, your estrogen levels are up where you can really do some good for your bones . From about 30 and on we start to loose bone. You need to be evaluated endocrine-wise to eliminate issues and to have a contact for future issues. Don't rely on just being in Boston to nab this.  I've had to jump up and down at the best hospitals for myself and my daughter 20 now... Two odd spinal fractures).  Friend me and you can get an appt with the aforementioned clinician.  You will be seeing someone who has EDS patients and will treat you. I never recommend the best of the best because they are usually not as good a deal as the middle level "workhorse" physicians.  But this is a niche and he is the one.  He is a very good teaching clinician so it works.  Friend me and I'll give you the info (meaning the person who can chase him down and get you in sooner... He travels/lectures so usually it takes months to get an appt.)

NyFrog: I had to disagree on that one point.  I was treated in '96 by an alternative practitioner in Orthomolecular medicine for post chemo issues.  Everything being said today about Vit D rolled off his tongue in '96 because it showed up in epidemiological research and research outside this country.   I saw someone at the Dana Farber a few years ago (clinician/researcher/epidemiologist) who was amazed how ahead of the curve he was.  He probably saved my life.  I just saw him yesterday.  Here is the latest: he presented at an conference in Calgary. A Vit D researcher met him after  to discuss his presentation ... where he argued that Vit D absorption and utilization is not a geographical issue but  a genetic one.  Hence, different people need different amounts AND that is influenced as to what is going on in their bodies.  Sunlight does help but is not the full answer. He has a patient taking what would be considered toxic levels of Vit D (by the least conservative) and he can only get his levels up to 43.  They measured urine and stool.  The man is in the process of reducing metastatic melanoma.  The Vit D is getting metabolized by the cancer.  He is living proof, albeit a more extreme case, of the variety of needs for Vit D.  I think EDSrs are the same.  I bet the constellation of generic factors, especially for EDSIIIs, might prove to have something to do with this.

My endo says he sees EDS patients with a need for higher levels if Vit D because they mal -absorb.  My Orthomolecular Practioner will probably disagree on the reasoning.  However, my endo MD told me  immediately upon reviewing my records, "I know what Orthomolecular Medicine is. I'll write to him".  Well, I look it up later and the endo was just awarded for a second time by the Pauling Institute.  I chased down treatment that I knew worked for me in the past AND found an allopathic MD who knew a lot alot EDS AND Orthomolecular medicine.... it blew me away.  But now it tells me where medicine is headed. The bottom line for many EDSrs is the same for me in '95.  I  had an unusual case of cancer then  and basing treatment on a 62 yr old woman's profile wasn't going to cut it.  I insisted that my treatment be determined outside the box.  As it was, I got a treatment that was commonly offered 2 years later and 4 years later a study came out saying my full treatment was now recommended for patients with my profile.  At time of dx,I had a physician/ (I went to three) told me that in 5 years there could be something of value to me, by way of treatment.  My response was 'great but I have cancer now and I would rather say I wish I had waited rather than not be here to make a wish'.

As for EDS, there are some people who are REALLY suffering somewhere between insurance and clinicians not administering the art of medicine.  They have it NOW and will suffer irreversible damage.  While it would be stupid to not ask for medical surveillance when taking high levels of Vit D, it is equally stupid to not try everything that can be given to prevent deterioration.  Being careful not to fall becomes much less important when one's pants are on fire.  And while water would be the correct solution, a cup won't do. A river would kill the one on fire but something in between would be just right.  While we figure out the amount, we have enough knowledge to be able to handle the situation constructively.  I feel that Vitam D is the same.  

I argue that levels need to be above 50ng/ml.  Why not? The head of the endo committee mentioned  was 58 ng/ml last January (a low time of year), my Orthomolecular practitioner is 94ng/ml (cuz both parents died young of cancer) and my neuro-opthamologist (senior physician at a teaching hospital) went, accidently into the 200's ng/ml. I'm not suggesting this but the way he looked so youthful and happy,  compared to 6 months before, was amazing!!! So guess who are popping the Vit D... The doctors!   

EDSrs need to go to their physicians,get tested and insist on raising their levels safely.  A consult to rule out pituitary and other  issues and to avoid cloaking an issue with Vit D is mandatory for deficient EDS patients with pain.  It's an injustice of health care if they are not offered this as they are bound to have bone issues.  Luckily, it is something they can get if they become knowledgeable.  And yes, treatment is cheap!

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My Vitamin D level was very low recently. My rheumatologist prescribed 50,000 IU pills to be taken twice a day. I took them for three months, and now my level is in the 60's, and my calf cramps are much improved.

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My levels were down to 14 and I was having extreme pain all the time for months. I just figured it was a bad couple of months for my EDS. Turns out, it was due to the vitamin D deficiency. They put me on 50,000 i.u. per week for 6 weeks which got me up to 40 and I backed down to 2,000 i.u. per day, then 3 months later when we tested it it was back down to 30, so I have an absorbancy issue like a lot of other EDSers I've known. So, I now take 4,000 i.u. per day and have my levels checked every 3 months. You can OD on vitamin D so you have to be careful, but I think the risks for being too low are far greater.

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For anyone who, like me, gets nauseated with about every pill, especially gelatin caps, I'd like to suggest an approach I've been trying. Since EhDoSomething's Vitamin D advocacy came to my attention, I have been poking a hole in the gelatin cap and mixing the oil with a skin cream (Aveeno) with dimethicone. Then I rub it on my skin right before bedtime. I have terrible skin issues, and instant redness, burning, etc, when I try something new. So, I tried it first on my inner elbow. There was no reaction. My hope was that the skin cells would be all set to deal with vitamin D, and since I eat a high vitamin D diet, I figured my gut cells were already sucking up whatever they could. I haven't seen any amazing positive results yet, but I will try it for a month and then stop. Usually that is how I can tell something was helping.

I think it is worth a try, not very expensive. Feedback welcomed!

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yup, some people definitely have different absorption of vitD (and yes, EDS-ers are associated with GI malabsorption and motility issues), and other compounds as well! so i am not disagreeing with you at all! and i also agree that there were many practitioners who realized vitD's importance well before it hit the medical "top 10" list: that is exactly why we need the good thoughtful healthcare providers to publish articles about their success with prolotherapy, or whatever, in their EDS patients, because for the millions out there not lucky enough to stumble onto that really bright doc, if it isn't in print, it unfortunately doesn't exist.

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Just a minor point in response to the post made by EhDoSomething above: I would say "Vit D deficiency CAN (my emphasis) exacerbate EDS symptoms in some cases." Like most things EDS, it seems to be individualized: there are examples of correcting a vitamin D deficiency in EDS patients that provided no efficacy in the manifestation of any symptoms. My daughter is one such patient, unfortunately; I think raising her Vit D to normal levels may not have hurt, except for providing an unnecessary delay in getting some actual help for her symptoms (which worsened, despite the correction and on-going maintenance of her Vit D level), but it definitely did not help. I think this is one of those issues that can be of great help to some, but can also be a complete red herring for others. At my wife's primary care clinic, Vit D deficiency is basically epidemic among the patient population, even among those whose lifestyle suggests they should test normal (proper nutrition, lots of outdoor exposure and exercise, etc.); yet almost no one in otherwise good health sees much difference when they are treated for it. There are even some doctors who argue against treatment because it lacks overall efficacy in the population at large, despite the fact there are obvious cases where it has helped people greatly (such as EhDoSomething) and it is a relatively safe and cheap treatment to try. I do wish SOMETHING in medicine was clear cut/black and white, especially as it relates to EDS, but it seldom is that easy.

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NyFrog: have you seen Borgstein et al re: prolotherapy?  She's always looking to 'poke' someone but prolo doesn't work well unless the problem can be defined to a specific issue.  I wonder if the EDS patient is particulary less of an optimal case since 'failures' or less than optimal results due to more diffuse patterns of pain can lead to assumptions or even lack of case studies due to not qualifying.  

Seascoutchick: it it tough to OD on Vit D.  It's probably more important to have a comprehensive lab work up to be sure of things, which may exist, aren't causing the imbalance.  I had this conversation with a Children's Hosp/Boston geneticist and fellow. (The geneticist hailed from MGH Adult genetics so she was seasoned) they warned my daughter about the 50,000 IUs she has been taking weekly for, at that time, a year.  They were suggesting she might be hurt by taking so much. I was disturbed that they would jump to that before asking more about the prescribing physicians care.  But they did not have access to those records (a #1 issue in health care today) and clinicians tend to focus what's on the computer.  All I can say is that I was glad I was in the room.  This geneticist has been excellent  for everything up to this point.  So I took the stance that she had something to offer and we could look at what was going on from a different perspective.   I cited that the benefits were very worthwhile and that my daughter really needs to know more. Well, the issue became that toxicity has been cited in the literature.  I zero'd in on that and asked how much,  how long and if there was monitoring.  The fellow looked it up on the computer and said it was  a much higher daily high dose, for about three years, without any surveillance.  So they acknowledged that there were benefits and that if under an MDs care, it was probable okay.  It was actually a very good discussion because everyone learned. And that is what one wants with a young adult patient and a fellow in the room. What made this really happen was the physician who readily took questions and conversed.

But one can see how hard it is for MDs ..... even in the same city with a guru of Vit D ... to understand or put into practice Vit D surveillance of EDSrs.  And this is an MD who gotten input from Dr. Francomano.  The bottom line is that there are a lot of sick people and our disorder is relatively rare.  An MD can't be in all places at one time. Which brings us back to forming a national and state presence to represent our needs... backed up by fundraising.8   It can be done but it's gotta be run like a business (which is why I'm hopeful about recent changes in EDNF).

AnotherMother: one can't eat a high Vit D diet that will correct deficiency. Let us know about the skin cream...but if your Vit D goes up it is probably due to sun exposure this time of year, particularly in San Diego.    If you don't want to swallow it, a good way to absorb Vig D is broken oil capsule(s) under the tongue.  I absorb it better that way (proven in a small study). You really can't judge your levels until you have done the labs.  Don't shy about asking.  Lot's of suntan lotion equals less UVB rays. Also, there are injections but with the EDS skin issues your probably better off with sun and sublingual. 

Spdytalk: THAT's the way deficiency is treated. It's encouraging to hear.  I had the same results... Also increased muscle tone, memory difficulties subsided (weird facial recognition stuff).  The only thing I can say that I absolutely disagree with my endo about Vit D3 vs Vit D2. So I take D3 & he's fine with that.

Reims: i'm unaware of your daughter's symptoms. You will need to know the test results in order to say whether she was high enough to make a difference. Many MDs call 30ng/ml normal. It's about as "normal" as a woman having a hemaglobin level of 12 or a hematocrit of 37.  Yes, they are in range but I sure feel awful when those are my levels.  I had osteomalacia and I suspect the other poster with bone pain did also. By the time I got to the MD, I had been taking Vit D and it measured 27.  He was sure I was coming from a lower range because of my symptoms.  One doesn't have such  symptoms at that level. The other reason is that there is significant variety in the accuracy of the results from lab to lab.  Lab Corp and Quest are well regarded.  So maybe the results could be off.  It makes a big difference when one is boarderline. But the answer is to use the range of acceptable results to buffer the differences between labs.... Meaning at least > 40 as NyFrog stated.  It is all in the article in my journal.   

The other thing I question is the approach of your practitioner: large amounts of Vit D without some effect noted within 4-6 weeks (I knew within a week due to energy level) should have prompted further investigation.  Since they waited 3 months, they were letting her hang a bit long. What if it was sonething needing more immediate testing?  An MD should have the patient leave with a plan of "take this and if some improvement is not noted in 'x' weeks, come back in. Otherwise, see you in 3 months".    
I assume your daughter has hyper-mobility.  Vit D deficiency causes lo-tone but not hyper-mobility or soft skin.  Vit D doesn't cause Morton's foot or blue sclera.  So there was probably reason to prescribe the Vit D AND continue to look further since she had symptoms.

Just be sure her levels are above 50ng/ml.  If they are, then I agree, the Vit D doesn't make a difference (although there us a very small chance a level up to approx 80 meets her individual needs).  The range is 30-100 so she us well inside the safe range.

I'd check the numbers and repeat testing to be sure.

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There was a study done at the University of Washington about EDS:
The clinician confirmed that in EDS affected population, Vitamin D levels were potentially low and that with supplemental D, pain and inflammation could be reduced. As soon as I read the study a couple of years ago, I had my doctor test my levels. Bingo! Ever since I have taken 5 to 8,000 units of D per day, and I am only at 48, not the optimal 50. I also spend every spring, summer, and fall outdoors in my garden. The easiest way for me to take D is a liquid suspension. The only other ingredient besides D is pure coconut oil, so you can even just put the drop (one drop = 4,000 IU) on the back of your hand and lick it off!

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Would you please tell me the name of this liquid suspension? I don't see any liquid vitD in the 3 stores I've checked. Right now, I open the gelatin cap and mix it with coconut oil. But it does have soybean oil listed, which I already know can make me feel sick!!

Just want to add, putting the Vit D oil under my tongue (sublingual) also makes me nauseated. Sorry!! I did try it. It feels like a layer of heavy wax, is the best way I can explain it.

PS I LOVE coconut oil, cook with it every day!! I really think my cell membranes need this type of saturated fat, medium chains, to keep my skin intact. Maybe because I can't eat meat with saturated fats?

Thank you!

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It is Carlson Vitamin D3, soy free, sugar free, wheat free, etc. It comes in 1,000-4,000 concentrations. Some are available at Amazon but I found it online here: Q

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Thank you! I'll look for it.

Here is another article, short but sweet, about vitamin D and dental health and fighting illness:

It makes me wonder about those of us with the "mast cell hyperactivity" problem taking vitamin D, though? The immune system is so incredibly complicated.

Any thoughts?

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my daughter is 11 and her vit D levels are 30. her calcium levels are perfectly normal. i was told that this is unusual because vitamin D helps the body absorb calcium, therefore because her vit D is low, her calcium should be high. i dont understand it all.

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Completely OT, but...I never miss an opportunity to talk about the foundation when it comes up...

EDNF has been the national voice for 25 years. EDNF *has* been run like a business for years, not just recently. You figure it out though: 1500 members at $25 each is an annual budget of $37,500, the rest of which has to be raised through fundraising. And we are not a large market, which makes corporate fundraising even more difficult: at 1 in 2500 there are but 165,000 of us or so nationwide. It can't be a very big business with those numbers.

Being run like a business, however, often runs afoul of members, many of whom screamed about 50¢ for a copy of an MRG to pay for the printing costs, for instance. So we don't print them anymore, but that also means none of us have professional looking copies to hand doctors—home-printed MRGs look like anything else that you pull of the Internet, not like the professional publications as they were created.

Being a national advocate is something EDNF used to do *much* more heavily. It requires more dedicated people who can attend all the meetings, who can travel, who can represent us well. It also raised complaints from members: why were we part of NORD, TAD, GenTAC, etc. when members were needy, what possible use was all this representation to us at home? So now we're back to doing conferences every year. But this means the foundation does almost nothing but organize a conference six months out the year, we simply don't have the money or manpower to do much else while the conference is being organized.

EDNF is a very difficult thing to manage, to volunteer for, to try to direct. Nonprofits in general are very difficult to run, because it is impossible to make everyone happy, and they have different goals than businesses. Businesses exist only to make money. Nonprofits exist to provide value to their members or constituency. In medical nonprofits, particularly those with a largely ill membership, volunteer labor is slim to nonexistent, which makes money more important, although you have to be careful about fundraising, too, to retain an objective, independent stance that isn't compromised through alliances with pharmaceutical or appliance manufacturers.

And the people who are happy are not frequently the ones you hear from.

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BTW, raising my vitamin D has done nothing for my pain levels or energy, either. I was hoping...

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thanks and well put, EDSerMark. I for one am very very happy to be attending the conference in two days.
I THANK YOU for all the work you (and everyone at EDNF have done and do. :-) = happy member of

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