General Question

DrasticDreamer's avatar

I'm vitamin D deficient. Is there a particularly good supplement I can take?

Asked by DrasticDreamer (23996points) August 29th, 2014

My doctor just prescribed 50,000 units of vitamin D2 to me today (7 pills, one per week) because I’m well below where I should be for vitamin D levels, and then I have to switch to 2,000 units per day.

However, after doing some research, I realized the general consensus among doctors is that D3 is preferred over D2 to actually make a difference in deficient patients, but that D2 is often prescribed because it can simply be really difficult to find D3 in high enough doses that will make a difference in someone as deficient as I am. The drawback, apparently, is that D2 might raise your levels, but only very, very shortly – which defeats the entire purpose of being placed on such a high dose to begin with, and some people even claim that D2 can have some negative health consequences.

So… although I’m going to follow my doctor’s orders, I would like to find a 2,000 unit supplement, but in D3, not D2. Is there anyone here who was really deficient, took D3 supplements and saw a difference in levels after a blood test? If so, what brand did you take?

Observing members: 0 Composing members: 0

51 Answers

ARE_you_kidding_me's avatar

I took the 50,000 and while it worked there are better ways.

Gummy D vitamins worked better, each has 1000Iu so I took five daily. Now I take Carlson’s D enhanced cod liver oil. Two spoon fulls daily to catch up and one to maintain. My D tests around 70 whenever I have my physical. I already have sundamaged skin so the natural way is out for me. I spend plenty of time outside but with gobs of sunscreen. D3 is what you really want, I don’t understand why D2 was even considered.

snowberry's avatar

D3 is best absorbed with Vitamin K. I did show up as low in Vitamin D, and my doctor put me on this supplement, but I never got a re-test. He had extensive experience prescribing that same supplement on other patients, and we both were comfortable because my symptoms improved.

My doctor never prescribes D2 for exactly the reasons you give: It’s temporary, and therefore not very effective. Better to do it the right way in the first place.

Edit: This is the brand my doc told me to take:

DrasticDreamer's avatar

Thanks guys, any advice is welcome. I’m really deficient and seem to be dropping, so I need to get D3 in me ASAP. I asked my doctor if she could change the prescription to D3 instead, but I haven’t heard anything back from her yet. :-/

ARE_you_kidding_me's avatar

Be sure to thank your doc for even testing. Most don’t. I have not had so much as a cold in five years since getting my levels up. Some shrug it off but I think it’s that important.

DrasticDreamer's avatar

@ARE_you_kidding_me Yeah… I had a lot of stuff go very wrong for me, quite suddenly, a few years ago. After doing a lot of reading about what being deficient in D can cause, I’m almost beginning to wonder if this is the source of most of my health issues.

hearkat's avatar

I take the MegaFood Vtamin D3 2000 IU at my Doctor’s recommendation for low D and autoimmune diesease. I like the brand and we take several of their supplements, because they are naturally sourced from GMO-free food. Most of it is organic and a lot of it is also vegan and/or gluten free. The company was founded in 1973, so it’s not as if they’re jumping on some health trend, either.

talljasperman's avatar

Some time in the sun will raise your vitamin D3.

JLeslie's avatar

My advice is take the prescription to get your levels up initially. It’s the easiest way to get large doses. Once your numbers are up above 40 then you can switch to OTC, but beware I would bet money 2,000 IU a day will not come close to maintaining your levels in normal ranges.

Even if you opt to not take the prescription and take 8,000–10,000 a day OTC D3 at first, still be warned switching to 2,000 IU’s after getting to a good level most likely will not be enough. When you switch to a lower dose for maintainence be sure to get tested again within three months.

My experience was I finally got up to 49 and then switched to 2,000 IU daily and within three months I was back at around 20.

I take as much as 70,000 IU’s a week to stay up in nornal levels, the 50,000 pill, plus additional daily. I lower it when I am out in the sun a lot (which is rare). I did an experiment going out in the sun in my bathing suit for 15 minutes every other day and it was not even close to enough sun to raise my D level on its own. It isn’t worth the wrinkles for me or cancer risk. Although, when I do go in the sun and tan during a weeks vacation I feel great. Incredibly strong, and my D level has been as high as 70 during that time of lots of sun and continuing to take the 50,000.

Also, when taking “high” doses of D your doctor is supposed to check your calcium to make sure it doesn’t get too high. High blood serum calcium is very bad for you.

Lastly, to further comment on vitamin K, the way I understand it K aides in getting calcium into the bone, not in absorbing D. The combination and K2 and D is a good idea for soft tissue and heart health. When the calcium doesn’t go to the bone and floats around in our blood stream it settles in arteries and other soft tissues, which narrows and stiffens arteries and can stiffen organs. The likelihood that your calcium number will go above nornal is very low at the dose of D you are prescribed assuming you are not taking tons of calcium. Still, good to check the number though and get the blood test. Very cheap test that is part of the regular CBC.

Vitamin D is my magic pill.

I truly believe low D levels is a contributor to why so many women have autoimmune problems.

syz's avatar

I swear, I think the standards have been changed – literally every woman that I know that has blood-work in the last year or two is D deficient (I took a poll).

ZEPHYRA's avatar

I take D quick fix in drops.

DrasticDreamer's avatar

@JLeslie Thank you for your answer! I’m at 20 right now, as well, and I really don’t want it dropping even lower, so I’m a little concerned. I wouldn’t have known to have my calcium levels checked either, so thank you for that info.

DrasticDreamer's avatar

@syz I live in the Pacific Northwest, so I guess it’s pretty common to be low or deficient in D here, but I’m ten points under the lowest acceptable level – which is 30.

@ZEPHYRA Do you know if they actually help raise your D levels?

JLeslie's avatar

@syz The normal range was changed about 15 years ago I think. Women are more likely to be dificient because we worry more about sun protection and use more sun protection. Most women wear SPF on their faces daily, and for people who work indoors that is often the main place they receive sun. The studies about ony needing 15 to 20 minutes of sun exposure daily are done with the assumption of 40% of your body exposed.

Men are more likely to take their shirt off on the weekends if they are outside, get burnt on the back of their necks (women are more likely to have hair protecting their neck) and I see more men with a golf tan than women. I saw results for one study in Miami and the number of people in the sample who were D deficient was about the same percent as northern studies. In FL we protect ourselves better and more consistently than up north. If I wind up outside when I didn’t expect to be, within 30 minutes I am burnt. At 20 minutes I am already starting to show signs of red. That can be just talking to a friend an extra bit before I finally get into my car. The result is I am generally extremely white living in the sunshine state. No tan no D. I don’t believe most people can get enough D just from food, unless they happen to eat a lot of foods extremely rich in D and most Americans don’t.

Their have been studies showing correlations (maybe it is actually a causation, not sure) or low D and malfunction of the parathyroid. I think that is partly how they came up with the low number for the new nornal range. The old range had to do with rickets, the new range is considering other maladies.

Taking extra D does not do much of anything in my experience, unless the dose is therapeutic, and that is why the blood tests are so important. I could take 2,000 daily for weeks and months and still feel like crap. Hell, I did it. The real change for me starts when my numbers get into the thirties, even better near 50 and 60. I never would have thought it would work. I was shocked to find out through blood tests how much difference the D made. I thought my thyroid was the main cause of many of my problems at the time. It took me a while to single out what was affecting what.

Your poll is why it is pretty upsetting to me that there are doctors who still don’t test for it. Even by old ranges most women are borderline if I remember correctly. I guess we could try to google the old range.

Now science is doing or has done some studies regarding D and diseases like MS and Parkinson’s. MS clusters in the upper Midwest, so lack of sunlight has been a theory. I think studies have been inconclusive. Also, there have been studies that low D is related to Alzheimer’s. I don’t know what else they are looking at, but I do know several people who are sure D helped tremendously with muscle pain. Two people I know basically were limping at times before finally getting enough D. The others were experiencing either one or more of the following: pain, weakness, cramping, and shakiness.

@DrasticDreamer Next visit have them check your vitamin B12, I know a lot of women who are very low. Most of them were still in normal range, but extremely low normal, and being actually outside of the nornal range is really bad, so I think we should not risk dipping below the normal threshold. Also, check iron or all the red cell numbers on the CBC (things like hemoglobulin, hematocrit). Most doctors don’t mention screwy red blood cell numbers on the CBC if they are borderline, but for me getting my iron up (which positively impacts the red cell numbers) makes a huge difference in my strength, stamina, whether I feel tired easily, and also I believe it effects whether I catch colds easily.

I’m a big believer in actually knwoing your numbers, I don’t believe in just popping large doses of pills on a guess. Once you track your D for a year and try different doses, then you will know what you need and can get tested less. I check my D about twice a year now. At first I checked it 4 times a year. I check my CBC 2–3 times a year, but I have the anemia problem, you might not. I check B12 one time a year if I remember. I never was actually dificient, but very low. Taking a supplement seems to work, so I don’t worry too much about it.

Please update us on how the D works out. If it helps you. I’m always curious to hear stories related to vitamin D.

JLeslie's avatar

Sorry for the typos in my last post like their instead of there.

One other thing, D should be taken with food, preferably someone thing that has a little fat in it. Also, better to not take it with milk or other dairy products. Dairy slows absorption of many minerals. It’s ironic D is added to milk.

Iron supplements, since I mentioned iron above usually are best on an empty stomach or with a little OJ. Vitamin C helps absorb iron. The acidity of citrus helps absorb minerals usually. But, beware with some drugs (not vitamins) some are very dangerous to take with grapefruit juice, and I don’t personally risk them with OJ either.

DigitalBlue's avatar

I started with the prescription D2 about five months ago, I have a follow up next week, is it standard for them to prescribe some kind of upkeep? I live in Ohio and we’re heading into autumn/winter, so I am curious, as well.

DrasticDreamer's avatar

@JLeslie Yeah, the stuff about MS being linked to D deficiency is interesting because a doctor just told me not too long ago that I have a whole lot of MS symptoms – which I’ve been wondering about for quite a while now. If vitamin D makes all of the MS-like symptoms disappear, words will never be able to accurately describe how happy that will make me. Even thinking about feeling normal again is enough to make me cry.

@DigitalBlue After my 50,000 units of D my doctor said she absolutely wants me to continue taking over the counter vitamin D. I just bought some D3 yesterday so I have it on hand and I can start taking it immediately once my Rx is gone. If you have very low levels and you’re deficient in D, I would continue taking a D3 supplement daily.

JLeslie's avatar

@DigitalBlue If after 5 months your level is around 50 I would say your maintenance dose needs to be the dose you are taking already or very close to it. If it was too much D your number will be up at 80 or 90. Even then I caution you not to cut your dose more than half. The example here, and wI tried it as well, of going to 2,000 daily is 14,000 IU a week, which is way less than half of 50,000. Way too drastic a cut. If you stick with the prescription you could go to skipping a dose one week a month, or taking it every other week, and taking D3 in a multivitamin or on it’s own. Don’t wait more than three months after lowering your dose to check your levels. Doctors wait way too long for retesting so many things.

If you are pale white throughout the summer, no tan, there is no significant difference between summer and winter months for you really. No tan no D. I think of you as being very white, but you might tan in the summer months I don’t know.

Do you feel any better?

@DrasticDreamer I hope it helps with your MS like symptoms. You haven’t described what your symptoms specifically are, but I think you should be optimistic. I really believe my doctor who diagnosed the D dificiency probably saved me from developing some sort of serious problem in the future. At first I was very reluctant to take the large dose of D, because I hate taking pills and I don’t usually buy into whatever “natural” medicines are being pushed. However, the blood tests help to convince me I was deficient and had to try something. I played with just taking some extra D3 initially, but I was going by daily recommendations in the mainstream, not wanting to take the large doses. Now I am convinced about D and it’s effects on the body and the need for therapeutic doses.

Looking back I must have been D deficient for years. I think over time it affects the body and some things, some symptoms, are reversable and some aren’t. I don’t know if people with an actual MS diagnosis actually get relief from D, maybe by then some of it is too late. The nerves already have lost some sheeting, or something I know very little about it. I think the D can help prevent or stave off the progression of some of the diseases they hypothesize are connected to D.

DigitalBlue's avatar

I don’t understand why vitamin D seems to be broadly ignored by doctors or treated as an afterthought, it appears to be linked to a long list of health concerns, from depression to Alzheimer’s to dental concerns. I know there are links to fertility issues and you would think that dealing with a patient who is struggling with infertility (in my case), that would be high on the list of things to look at, but I am the one who requested the test.

@JLeslie I have a really faint tan. I do get 10–20 minutes of sun most days, I have made it a point this summer to go out in shorts and expose my legs to sun for a little while, because of the deficiency. I have a little farmer’s tan that is probably barely noticeable, my chest and arms are a different color from my torso. My face doesn’t really tan anymore, it just freckles and gets rosier. I think we were expecting my final number to be closer to 30? That’s the low end of the desired spectrum, if I remember correctly, and I thought that was our goal, but I could be mistaken. I’ll see what it is on Wednesday, I have a follow up appointment then.

I felt great after my surgery in April (unrelated to vit D, which you know), and I still feel infinitely better than I had, but something is still wrong. Going to an endocrinologist next, I think we’re still chasing my thyroid around, GP tested that again last week. Now, instead of feeling like I am constantly running on empty with a chronic ache, it’s like I feel like a million bucks and overflowing with energy to zilch. It’s like a vacuum cleaner that you have pushed to far and yank the plug out of the wall, I go from 100% to zilch very rapidly. It’s hard to know what is from getting my levels up and what is from surgery and what lingering issue is causing the complaints that have not been alleviated in this recent treatment. I had expected the joint pain to be vit D related, but it appears that is not the case. In any event, I’m happy to have my levels in a normal range (hopefully, anyhow, won’t get the results until this coming week.)

@DrasticDreamer do you know why yours are dropping? Are they dropping while you’re on treatment?

JLeslie's avatar

@DigitalBlue I never had joint pain, unless you count my shoulder from my injury, but that is a totally different thing, so I can speak to joint pain and vitamin D. Joint pain is observed in some thyroid patients, but that was never my complaint.

I start feeling better once my D is above 30. Meaning I have lots of problems before 30, and once it moves up above 30 I get significant relief. Hovering around 30 is too risky in my opinion, because you can easily dip to 25, and how would you know unless you really start to feel terrible, who wants to feel terrible? Or, if you happen to be getting a blood test that week. I like a cushion, I like to stay around 50. If I go up to 60 fine, if I go down to 40 also fine.

I’m interested in what the endo says. This is the first time you are seeing a specialist for thyroid right? My endocrinologist is actually the person who prescribes my vitamin D.

As for why doctors don’t check it or don’t believe in it. I think the studies are inconclusive or there were some studies done showing no change for patients and doctors have stuck with that study’s finding. I don’t know how well each of the studies was conducted. I think rarebear was one of the doctors not buying into the vitamin D thing, and he gave a link on one Q. It might not have been him. I could try to search for it. My endocrinologist says she sees people like me every day. That she has to prescribe the 50,000 pill, plus people take extra on top of that. They many many patients describe a vast improvement.

DigitalBlue's avatar

This would be my first visit with an endocrinologist, yes. Maybe I will bring up the vitamin D with that doctor, as well. You’d almost think they would have more input, isn’t vitamin D considered a hormone? I could be mistaken.

DrasticDreamer's avatar

@DigitalBlue I was put on 2,000 units of D3 a few months ago, maybe slightly longer. The second time I was tested, I only came up by a point, because I now know that 2,000 units for how deficient I am isn’t nearly enough to bring my levels up. For my third test, my levels dropped lower than they were for the first test. So in my case, I think it’s just that up until now, I hadn’t been put on a high enough dose for it to do me any good. It may not, even now, since my doctor put me on D2 instead of D3 (sigh), but my fingers are crossed this will help me. Also, yeah, you’re right that “vitamin” D is actually a hormone.

@JLeslie The symptoms I have/had are numerous: Extreme fatigue, numbness on the entire left side of my body (literally from head to toe), tingling, muscle spasms all over the place, horrible dizziness – which is one of the most persistent and lingering symptoms that has been life-changing in a very bad way, frequent constipation, slurred speech and stuttering (which had never before been a problem) , major breathing problems in the beginning – which have lessened but still occur, swallowing issues, and the list goes on. Every single one of those issues hit me all at once and they were all brand new for me, after the entire left side of my body went numb one night, and it was the beginning of the hardest part of my life and was a contributing factor in why I left Fluther for so long. All kinds of tests were done on me (except to check for MS and a doctor only very recently said it looked like I might have it).

JLeslie's avatar

@DrasticDreamer I’m sorry you have had so many health problems to deal with. I can’t believe they didn’t think MS initially. I’m pretty sure MS is diagnosed by ruling other things out.

So, I’ll assume they did an MRI of your brain, checked you vitamin B12 (if they haven’t this is an absolute must for your symptoms) and your iron and thyroid. Some of your symptoms could be thyroid. Do you have high or low blood pressure? Or, is it always nornal?

I’m also going to assume your MRI was nornal. Did they do a nerve conductivity type of test? Where they prick you with a little needle to see how your nerves move the electricity?

Is your dizziness neurological or positional? When does it happen. I think my girlfriend has positional dizziness and the neurologist don’t bother to consider it or check her for it and it drives me crazy! I keep trying to get her to be specific about when it happens or to go to an ENT and she doesn’t.

Have you been to a neoruologist? A rheumatologist? An endocrinologist?

I do think some of your symptoms will be helped with the D.

I swear I don’t understand why any doctor starts with 2,000 IU a day for people who are deficient, I have never heard of it working for anyone. 2,000 IU is the common recommendation now, and it proves the standard recommendation is not being really researched in my opinion, and that doctors prescribe all the time without research, things just become standards. It’s why I always tell people to get the blood tests. What you have been taking would not have changed your symptoms. It’s like an adult taking a baby aspirin for a headache, it isn’t enough to do anything. It’s also why I say take the prescription for now and add some D3 along with it in your multivitamin. Take a multivitamin. It has mini levels of most things, but in case you are missing some other things not tested it will give you a little. Or, just do the D for now so you can narrow things down. You can take extra D3 alone, not in a multi. Take the script on Sunday, and another 2,000 whenever you think of it a couple times a week.

Don’t wait months for retest. Get it done 6–8 weeks later and make sure the dose is doing something. The fucking doctors are allowing you to feel like shit for months and months and months. Every new thing you try takes time to see if it is working, it’s not (again I’ll use an aspirin example) like taking a pain reliever and the headache goes away in an hour. You have spent what sounds like 6 months trying to get your D level higher never having taken anywhere close to enough D.

For me, taking the prescription starts to make a difference in just over a month. I go up about ten points in that time. Significant difference with my muscles.

JLeslie's avatar

@DrasticDreamer Another thing, don’t do any extremely restrictive no carb diets. Carbs are the primary source of energy for our nervous system.

Also, I want to emphasize how important the B12 test is. Your symptoms also fit B12 deficiency, which is very serious and can cause permanent nerve damage.

Is your dizziness the room actually shifting or spinning? Or, is it light headedness?

JLeslie's avatar

Ugh, sorry for multiple posts. I want to mention B12 normal ranges have been changed in some countries. The low nornal is now higher in those countries. America is not one of the countries that has changed the range. If you are towards the low side of nornal I recommend trying to get the number up. I try to keep mine above 500, my sister thinks it should be more like 700+. B12 is measured differently by different labs so those numbers might not correlate to your lab, but the point is the same to not be near the bottom of the nornal range, whatever the range is for your lab.

snowberry's avatar

Your average medical doctor has very little training in nutrition, and yet we routinely consult them in areas of nutrition such as in this case, and they usually think they’re some kinds of expert when it comes to such things. It’s probably your typical “god complex” in action again. It’s totally bassackwards, but that’s how it is.

That’s why I make a point to go to a doctor who knows nutrition as well as medical stuff. Even if I have to pay out of pocket (these doctors never take insurance of any kind), it’s so worth it. It’s saved my health 20 times over.

ARE_you_kidding_me's avatar

Keep in mind natural practitioners including chiropractors don’t usually either. There are few places to get actual scientific training in nutrition. It’s hard to know who is legit and who is a quack. Ultimately it’s our responsibility to get informed.

JLeslie's avatar

Well, her doctor did diagnose the D deficiency, so we have to give him credit for that. Almost all doctors understand the gravity of B12 deficiency, although most don’t test B12 in the absence of serious neurological symptoms, which is unfortunate. With the symptoms she presents with I would be shocked if they failed to check B12, and if they did fail to test it I would say that is total incompetence.

Moreover, I would encourage the OP to see more than one doctor if she has been sticking with her regular GP/internist just to get another set of eyes looking at the problem, even if it isn’t a specialist, although I think a specialist isn’t a bad idea.

@ARE_you_kidding_me It’s pretty upsetting that so many doctors with years of studying and practicing have trouble deciphering common problems sometimes. We are responsible for our health? The doctors are supposed to know more than us and care enough to do a medline search when they are stumped, and should be aware when they are stumped. When the standard of medicine isn’t working. If we go in asking to many questions and taking responsibility for a medical care most doctors hate it. We are screwed if we have a chronic problem that is difficult to diagnose or treat. Millions of women have that very problem. Some men too.

I had a dietitian tell me I’m probably not deficient in vitamin D, because vitamin and mineral deficiencies are so rare in America. Really? She didnt know I already had done the blood tests, I was just talking to her about supplements. when I told her she was shocked, I hope I influenced her to request the test for her patients. I know so many people deficient in D, iron, B12, and I believe probably iodine too, because packaged foods usually are high in sodium and it is not iodized salt. We no longer use table salt in the same quantities as we used to. Many chefs don’t use iodized salt, so you don’t get iodine in the restaurants either. I also wonder, I’ve never researched it, if we around the country actually eat more crops now from the goiter belt with the large commercial farms in the country now and the way we ship foods around.

snowberry's avatar

@JLeslie said “We are responsibile for our health? The doctors are supposed to know more than us…” @ARE_you_kidding_me said, “Keep in mind natural practitioners including chiropractors don’t usually either. There are few places to get actual scientific training in nutrition. It’s hard to know who is legit and who is a quack. Ultimately it’s our responsibility to get informed.”

Actually it’s not that hard to find informed practitioners IF you know where to look. I have yet to meet a traditional medical doctor who has had as much training as your average naturopath. Here’s a the required course load for Naturopath at the Trinity School of Natural Health: I counted 320 hours in required nutritional training, and an additional 320 hours in training that includes nutrition as part of the coursework. Can your average medical doctor boast as much? NO.

So the answer is always, remember YOU are the consumer. YOU get to tell your doctor what he can and cannot do with you. It’s YOUR responsibility to find out what nutritional training they’ve had. If your doctor is prescribing nutritional support and yet they haven’t had significant training in nutrition, they’re irresponsible at best, and you would be well served to go to someone who knows what they’re talking about. My chiropractor has had more nutritional training than your average MD down the street, but that’s my chiropractor. I can’t say that for every one.

JLeslie's avatar

All I know is I took one nutrition class in college, and that provided quite a bit of information. Just being a living human being no matter what specialty the doctor is in, they themselves should have some interest in nutrition and for that matters the basics of heart disease. One in three people get heart disease, it touches everyone. I have no empathy for the limits of their education, they can read and be interested in basic health. Or, did they just become doctors to make money?

I wind up responsible for my health, but I find it horrible. I am not the one with the medical degree, why am I the one responsible for health decisions. Sure it’s my body, so I am able in the end to decide what I will allow to be done to my body, but the responsibility, well that is the doctors job. It’s like saying I am responsible for the stability of my house. No. Florida helps ensure it is built to code, I can hire an inspector to double check that, I have no fucking idea how to build to code, I am not trained for it. I have to trust the builders and inspectors, just like I should be able to trust the doctors to know something. Especially something commonplace.

I remember being disgusted when friends of mine didn’t know their boyfriends give them cervical dysplasia and cancer. Their doctors never told them. You can read fucking Cosmopolitan magazine and learn that. Finally Merck wanted to make a shitload of money on their vaccine they just had approved and all of a sudden even doctors are talking about HPv and cancer. Some doctors did talk about it with patients before the vaccine, but I think most didn’t, and I’m think many had no fucking idea about the science and that the hypothesis had been basically proven that HPV can lead to cancer. They knew it was I was a teenager over 25 years ago. HPV affects risk over 80% of the female population.

It’s inexcusable, especially for GYN and GP’s not to have been up on that science.

snowberry's avatar

Sorry @JLeslie In my experience, you can’t trust medical doctors anymore than you can trust anyone else. Some of them are in it but they barely passed their medical exam. Others never got training in nutrition but persist in offering nutritional therapy anyway. Others may have gotten top scores on their schooling, but they have an obscenely huge god complex. I don’t know about now, but when I was growing up most doctors smoked, and yet more than anyone, they should have known better. Why would I trust a doctor who smoked with my body? It seems to be a total conflict of interest to me. I trust my naturopath up to a point, but I still do my research.

JLeslie's avatar

@snowberry I am not arguing that you should trust them, I am telling @ARE_you_kidding_me how dissappointing it is that we can’t.

And, stressful! The majority of my anxiety in my lifetime is from doctors.

A woman I met a few weeks ago was telling me her doctor gave her the rubella vaccine when she was pregnant! Total incompetence.

ARE_you_kidding_me's avatar

For the record, I will trust a good medical doctor over ANY naturopath, chiropractor or other pseudo-scientific quackery. I really don’t have a high opinion of many of them. There may be some that are legit especially if they started as a medical doc but not many. There is SO much medical snake oil out there that it boggles my mind. Many of them sell their “products” using the “medical doctors don’t know WTF they are doing but we do” pitch.

JLeslie's avatar

@ARE_you_kidding_me Me too. There are MD’s and DO’s that kind of specialize in a more natural approach and tend to check vitamins and minerals as a matter of course.

I am afraid of chiropractors, I have never used one, and doubt I ever will. I tend to not believe claims of herbal cures and similar things. As much as I know we create many of our pharmaceuticals from nature, I also think there is a ton of untested snake oil out there with no regulation that is total bullshit.

DrasticDreamer's avatar

@JLeslie They did an MRI in the very beginning because at the time the two biggest concerns were a possible stroke or Lupus. I actually had multiple doctors wanting to absolutely rule Lupus out because I guess my symptoms also matched that to a high degree. I’ve had two or three full CBCs done, so would that include a check for B12? I was checked for anemia and I was good that way, and yeah, somewhere along the way they checked my thyroid, too (this all started about three years ago, so the timeline gets a little confusing for me sometimes). The nerve test that the neurologist did involved putting sensors on a finger and a toe, but apparently it was normal. They didn’t actually stick a needle into my skin, which is what I thought they were going to do. My dizziness has stumped doctors thus far, but it was chronic to the point it severely and negatively affected my life. I still can’t drive because of it. In the beginning, it happened at all times and I never had a break from it – it was something that I had to live with 24 hours a day. The severity only lessened very recently, but I still get bouts out of nowhere that almost knock me over. There are times it hits me so hard that I have to hold a wall or I’ll almost fall over even if I’m already sitting down. It’s not an inner ear thing either, because I had it checked.

As of now, I’ve seen a neurologist, a heart doctor, a GI doctor because I also developed horrible indigestion at the same time as everything else and for the first time in my life, and because my throat was having bad spasms – which were terrifying. I was always too scared to bring MS up as a potential because I had very, very bad experiences with a couple of doctors when I was trying to establish a primary and they made me feel like I was nuts. Needless to say, it killed my confidence and hurt my faith in doctors – so I’m trying to rule things out gradually. However, I love the primary I finally found, so I’m hoping some progress is made. It was actually an ER doctor who said it seems like I have MS, and he was so confident about it that he said to absolutely talk with my primary about it – even though he said there’s not much that can be done if that is the case. I was SO relieved that a medical professional brought MS up, because it’s been on my mind for a long time now.

It also worries me, because although my symptoms have been slowly improving since the beginning, I know that some people who have MS experience it in cycles. Just knowing what’s wrong with me would be comforting in and of itself.

Thank you so much for taking the time to give me information, though. It means a lot to me.

JLeslie's avatar

@DrasticDreamer Oh man, I really feel for you. I completely am familiar with the feeling of doctors being dismissive and condescending and intimidating. Having a chronic undiagnosed illness is so awful. It’s terrifying and affects our identity.

Your dizziness does sound neurological or maybe inner ear, it doesn’t sound positional that’s for sure. I know only basics about dizziness, so I have no real advice. One recent Q a jelly said the nitrates or something in bacon caused him to have vertigo episodes. He narrowed it down by writing down what he ate and then seeing when the vertigo occured and got lucky and found a connection.

Doctors tested me for Lupus three times I think, even though I don’t have most of the symptoms. When a doctor wanted to run the tests a fourth time I refused, I’m tired of the waste of money, and the iron in my blood is precious. They also tested me for Sjogren’s more than once. That usually involves drying of mucous membranes and other things. My dryness gets incredibly better when my thyroid is better and when my iron is up. Be wary of doctors wanting to make a diagnosis, because as much as I can understand why you might want to be able to put a name on what you have, a diagnosis sometimes means they stop looks for what actually might be wrong, or actually the underlying cause. Generally, autoimmune diagnosis means the doctors believe you are just SOL and your body is attacking itself. I don’t buy it. I think there usually is an underlying cause, science just might not have figured it out yet.

I don’t think you listed a rheumatologist. They often treat MS and I guess neurologists do too? I know a couple people with MS, but I never asked them about their doctors.

I know how difficult it can be to see another doctor. I laugh also when one person says I am a hypochondriac and am trying to cherry pick doctors, and then another person will say I need to go to the next doctor and the next until I get some answers.

I am pretty sure an MRI shows signs of MS. This you would have to check me on, and even if it does, I don’t know if you were in the beginning stages if it might not show up in the brain yet.

A CBC does not check for B12. Doctors do not regularly order a blood test for B12, but I would hope your primary or neurologist has ordered it. Your going to have to start keeping a copy of your lab information if you aren’t already. You cannot trust the doctors to tell you everything or test for everything. They especially might not tell you when your test is nornal, but very very close to being out of bounds.

If your thyroid has not been tested in three years you might want to repeat it. I think women should have that checked every so often anyway. Although, I didn’t think that explains everything either.

I really think the vitamin D will help, but it probably is not the whole answer. Did you start taking the 50,000 pill? take it! Promise me you will. Kick start your D levels so you can rule in or out if any of your symptoms are related to D deficiency.

JLeslie's avatar

I think you will find this article interesting about various causes and possibilities for some of what you are experiencing.

ARE_you_kidding_me's avatar

One I would do right away is start taking the best quality probiotic you can find. They must be refrigerated so unless it is don’t bother. This cured years of IBS for me. I’m convinced if left untreated it would have lead to other medical problems. That’s one thing my doc did not consider even after he basically gave up trying to figure out my issues. I’m also somewhat of a hypochondriac so it’s not surprising. Seriously though, the probiotic yielded dramatic results for me.

JLeslie's avatar

@ARE_you_kidding_me There are probiotics packaged on punch cards that don’t need to be refrigerated. They are great for travel or storing at work.

ARE_you_kidding_me's avatar

@JLeslie are they still high potency? I tried several like that in the past but did not feel like they did anything.

JLeslie's avatar

Yes, I feel I have had good luck with them. The last lot I bought my pharmacist recommended. I asked her what she recommends, because I was taking mega antibiotics again and it was the type of antibiotic that really destroys good bacteria, and I feel the probiotic was very helpful. I might have some left in my OTC box of stuff if you want to know the brand. I actually took that one and one I had leftover from a few months before. I took one of each per day for a couple of weeks.

Even if your fridge one has more billions, having this as a back up for when refrigeration is impossible isn’t a bad idea in my mind.

ARE_you_kidding_me's avatar

Yeah, if you don’t care send me a pm

DigitalBlue's avatar

So, I saw my doctor today, and my vitamin D is still only 25. He’s referring me to an endocrinologist, but they said it takes 3 months to get in to see that doctor, my doctor said my body isn’t holding on to the vitamin D. That sounds similar to what you were saying, @DrasticDreamer. I forgot to ask my doctor, but do we know why that might happen?

It’s the end of summer, I’ve been out in the sun every day possible, if I can’t get my levels up now, how am I supposed to get them up at all?

snowberry's avatar

Look at the link I provided for the delicate balance between D and K and do an Internet search for reasons your body might not be absorbing D. Here’s a link for that. If you don’t like my links, find your own. They are out there.

JLeslie's avatar

@DigitalBlue I think I said this already, so if I did excuse that I am being repetitive. Make sure you are taking the D with food that has some fat, and best not to take it with dairy. Also, I was taking 60,000–70,000 IU’s to get my numbers finally to go up initially. The script pill once a week and then extra D3 on top of it OTC. If I missed taking the extra 2,000 one day, I just took 4,000 the next and I take a multivitamin sporadically that has some D.

My endocrinologist says she it all the time that even 50,000 isn’t enough for some people. Also, if you’re a soda drinker you might try to reduce that to help absorb vitamins and minerals.

I couldn’t help but wonder about how D is used in the body when I realized I had to take so much. So is every little bit of extra I take being used up if it is that hard for me to get enough D to raise my blood levels? Or, is it an absorption thing? I don’t know.

The sun didn’t do much for me either in little bits. I really question the recommendation that just 15–20 minutes of sun exposure is enough, I don’t believe it. I think someone made that up and it caught on. Sun makes a difference for me when I spend hours in the sun days in a row. It’s almost impossible for me to do, because I burn in less than 30 minutes. I need to go in the sun, then go again later that day, then again later that day, and do it for days. That’s basically what happens when I am on vacation, never during regular daily life.

snowberry's avatar

My doctor told me that people who live in places like Indiana that have cloud cover much of the year are always deficient in Vitamin D. Add to that a sedentary lifestyle, nobody should be surprised..

JLeslie's avatar

@snowberry The whole country is deficient. When I lived up north I went in the sun more in the summer, and worried less about protecting my skin. In FL I protect my skin all the time, all year. Clothes and SPF block the D, it’s just like being in cloud covered Indiana if not worse. However, I agree being in a state with a lot of winter and very little sun over half the year makes it much more difficult to have good D levels all year round. If the person sunbathed a lot in the summer or worked out in the sun, and got the levels very high, it might take them through a few months in the winter. We do store D as opposed to vitamins like B and C. One problem in the US is we usually don’t eat large quantities of D foods.

My husband usually had good D levels in TN, usually around 45–50, his only supplemet was a few hundred D3 in his multivitamin and we eat very little D enriched foods like milk and he doesn’t eat herring, although he does eat some D foods. His last test now living in FL was borderline, right at 30. I’m glad his new doctor here thought to test him. I think it is because living in an apartment he isn’t out washing his cars every weekend. He used to get a lot of sun doing that. He has been paler than usual.

In the last 20 years, women especially have been protecting their skin, and so it will be interesting to see if occurances of MS and other diseases that are thought to be associated with D deficiency start showing up in more southern states. Previously, the availability of the sun made a difference I think, but I would bet not so much anymore. As I mentioned above I saw one study done in FL that the random sample of participants were just as deficient in D as studies done in northern states.

DigitalBlue's avatar

@snowberry it’s not that I’m surprised, far from it, especially given how long our winters can be in this part of the country and how gloomy the rest of the seasons can be. However, as I mentioned above, I’m trying to get pregnant, I already deal with secondary infertility, and vitamin D deficiency has a negative impact on fertility. So, getting my levels up is very important to me, common as it may be.

I am, however, surprised at how challenging it has been to get my levels up to an acceptable level. It’s the end of the summer, I am outside in the sun most days, and I have made it a point to forgo sun protection for a portion of that every day in order to accumulate some vitamin D. Generally, I’m a sunscreen user, but this summer I have made getting my vitamin D up to be the highest priority, and despite taking OTC D3 with my supplements, 50,000IU of prescription D2 once a week, and being out in the sun on every day possible, my levels are going up even slower than they were when we first started supplementing 6 months ago. That is surprising to me.

JLeslie's avatar

@DigitalBlue It is surprising it’s been this hard. It’s like your body is sucking in all the D and using it up. At least that’s how I feel about my body.

I always was a little nervous about taking the 50,000 once a week if I got pregnant, so I wanted my D to be up in a good range so if I got pregnant I could switch to D3 daily at a more reasonable dose.

Have you tried probiotics to try and improve the bacteria in your stomach? I know there is a school of thought that the bacteria when screwed up inhibits nutrient absorption. I don’t know about it in relation to D.

DigitalBlue's avatar

I always take probiotics, plus I eat yogurt and kefir and other fermented foods regularly, so I don’t think it’s that. I’m not sure what it is, though.

ARE_you_kidding_me's avatar

@DigitalBlue Try taking it a different way. My levels came up with the 50,000Iu supplement but not very fast. They came up faster using gummy vitamins but they came up right away using the D enhanced cod liver oil. It gives you your fish oil also. If you try it be sure you get Cod liver oil with added D3 otherwise you’ll end up getting too much vitamin A. Two spoonfuls of this stuff daily will probably get you there.

JLeslie's avatar

Be careful with A. Too much A is dangerous for a fetus.

Answer this question




to answer.

This question is in the General Section. Responses must be helpful and on-topic.

Your answer will be saved while you login or join.

Have a question? Ask Fluther!

What do you know more about?
Knowledge Networking @ Fluther