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Wondering How Many People Have Found They Have Low Vitamin D Levels


blueskies

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Hi all,

Just wondering how many of you have found they have too low vitamin d levels and if supplementing vitamin d helped anyone to feel better?

Apparently I have low vitamin d levels -- at 40 instead of 80, apparently. I've just been researching it and have found out that vitamin d isn[t really a vitamin at all but rather a hormone. As it's summer here in Australia I've elected to get out in the sun every day for 15-20 minutes, exposing 45% of my body, between 10am and 2pm. EXACTLY the opposite to recommendations given by the Cancer Council in Australia - it's slip slop slap, here - Slip on some clothes, slop on some sunscreen and slap on a hat when going out in the son -- so I'm not suggesting anyone do what I'm going to do as there is the skin cancer factor which is certainly serious. It's a chance I'm willing to take to see if low vit d levels are making me feel sicker. But again, Not Suggesting that anyone else do it. Besides which, 15-20 mins in the sun could not be that harmful, I figure.

I'm hoping that the short exposure to the sun everyday will up my vitamin d levels without having to resort to vitamin d tablets which can cause constipation - one of my worst symptoms. It's a pity I can't drink cod liver oil because it's high in vitamin d apparently but my skin would probably react to its probable high amine levels.

blue

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I have a pretty bad vitamin D deficiency, I still haven't managed to get my level up even though I take 2000 IU per day. I'm almost at the point where I'm willing to try tanning to help, but I may just invest in one of those therapeutic lights.

I will say, I have issues with constipation as well and the supplements have had no effect on that, and I take a high dose. It may be different for you though, I have bad constipation issues with other supplements.

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My understanding based on reading some articles is that 30 D3 is what the lab considers "normal", and 50 what vitamin D enthusiasts consider normal? Who told you 80 was normal? I was borderline when I was at my sickest when I first got sick a year ago in the mid 20s - I've been supplementing with 2600 IU a day (D3 + multivitamin has some D) and now I'm in the low 40s.

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2 months ago my vit. D level was at 20. I live in Florida and have heat intolerance, so in the summer I could only go out early in the morning or after the sunset. I was taking 3000 IU a day at that time, but obviously it wasn't enough. I was told by my family doctor to take 5000 IU a day. She wants to test me again in January. She said it needs to be over 30, but nothing about the upper limit.

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My D levels always hang in the 15-18 range. I try either prescription or OTC pills for a little while and get my levels up to around 30, but the pills make me feel awful, so I quit. I am now committed to getting sunshine beginning next spring. I am heat intolerant also, but I am going to push myself for that 15 minutes of sun.

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My levels are quite low too. They were around 18 a while back and I finally got the level up to 25 this summer. I don't feel so well on supplements either, but my nurse practitioner said to try tanning salon as she said several of her patients felt better with pain etc. I was reluctant to try it but did so and did not feel worse from the tanning. Stopped for a while and am going to start again now that it is almost winter. I can't tell if I felt better in the spring when I did it but it is worth a try. I go in for 8 minutes,, twice a week. There have been some posts on this in the past.

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My Vit D level was 8 (normal range 30-100). Dr prescribed a once per week 50,000 unit Vit D for 8 weeks. It came up to 44. I now continue (when I remember) to take a 1000 unit supplement per day.

I did not feel any differently after it came up.

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Yes I have vitamin D deficiency, I was started on D3 supplements but I'm not sure they have really helped so far. My endocrinologist is going to prescribe me a higher dose, so we'll see how that goes.

As to the difference in what people here think is a normal level, I'm pretty sure that is because vitamin D levels can be measured either in nmol/L or ng/ml. 80 nmol/L is equal to around about 30 ng/ml. I think that's right anyway! :) You can always look it up online to check.

Lyla

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Hi,

I'm in Australia and often our blood tests are measured in different ways -- often making it hard to work out what is 'normal' on a mostly American site -- Thanks Beforethemorning for making that clear -- now I know the difference, at least in regard to vit. d

My gp ordered a full blood workup.

Thanks everyone for your imput. I'm not surprised that vit d. (which is really a hormone, not a vitamin -- something l learned yesterday) levels are low for a number of us.

There's a couple of a youtube videos I found interesting. I don't know how to link to them but the first is called:

Dr Stasha Gominak Discusses Sleep and Vitamin D (you can watch it in 5 parts or all at once.

The second one is:

Vitamin D: The Original Source - How to use it

Sorry I couldn't put up the links but you will get to them if you search you-tube.

I learned a lot. Missed more than I learned due to brain fog. But it was very interesting. I take all this info with a grain of salt

blue

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My vitamin D has been as low as 12. I don't feel better with supplements. I have Multiple Chemical Sensitivities with adverse reactions to multiple meds, and I'm afraid to take high dose vitamin D. High doses of some B vitamins have caused bad side effects for a long time, and they're supposed to be water soluble. I saw haloes around lights for a long time after my doctor had me take high dose vitamin B-2 for awhile for migraines. I also believe it caused me to have my first complicated migraine with stroke-like symptoms. it definitely didn't help my migraines, and I ended up in the ER.

My vitamin B12 is low, too. I had bad heart arrhythmias and other symptoms for a long time after taking a high dose of B12 sublingually. I think it was 2,500 mcg. I can tolerate 500 mcg. sublingually (8,333% RDA). My doctor wants me to take 1,000 mcg., but I'm afraid to do that. My Ferritin level also runs low.

I never feel better taking any vitamins or minerals even when my levels go up some. I've also had kidney stones, and I've read that some vitamins and supplements can cause them. I know I need to take them, and I hope I never get anymore kidney stones.

I lost my older half-sister to melanoma, and my younger half-sister has had melanoma, too, so getting vitamin D from a lot of sun isn't an option for me. I'm also very heat intolerant, and I sunburn very easily.

I hope you'll be able to get your vitamin D levels up and feel better. My vitamin D has never been anywhere near 80. I believe my vitamin and mineral deficiencies do play a role in my symptoms.

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My vitamin d levels were low.... 25 on the 30-100 scale. I tried supplementing with d3 pills but I felt really sick, fatigued, and depressed from them which is the opposite of what I would have expected it to do. Everytime I stop I feel better. When I start them again I feel sick. After doing this many times I have accepted the fact that the supplement makes me sick. Sunlight seems like a much better source and doesn't make me feel sick but doesn't get my levels up.

Does anyone know exactly why people with dysautonomia have low D levels? It really amazes that in 2013, almost 2014, researches and docs can not identity the role of this hormone in certain conditons and how to deal with it. I don't believe supplementing or just taking it is the answer for a lot of conditons and would argue that it actually makes a lot of conditons worse. You would think we'd be further along in this stuff but it is what it is I guess. Like most medical stuff it's a complete crap shoot. Go figure?!?

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Hi ShinerKitty,

I'm so sorry to hear about your oldersister. And with your youger sister also having a melanoma I understand why you would not be tanning.

Hi Jon,

I think medicine has such a long way to go, too. I was at my allergist's on Monday trying to work out how to have some teeth removed by the dentist as I've become allergic to the local anaesthetic and twilight reaction (we've decided on general anaesthesia which seems like overkill but with my allergies I don't have a choice). We were talking about an anaphylactoid reaction I had about 4 years ago and I mentioned how my body had broken out in itchy urticarial redness that covered half my body but not straight down the middle of my body. It was on a smaller part of my back for example, and a larger part of my front. How they gave me meds for it and it disappeared but not long after, and before I was discharged it from hospital, it came back, only it was all over the other parts of my body that had not been covered the first time. I asked her how the body knows to do this, why the body does this, and she just shrugged. It seems it's a mystery. It happens but they don't know why. Since my pots journey started some 11 or 12 years ago that's pretty much the standard opinion of most docs. Things happen, they aren't sure why, they may or may not be able to treat different symptoms. Just not enough is known about pots and so many other illnesses. It's a pain in the butt that's for sure.

blue

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My vitamin d levels were low.... 25 on the 30-100 scale. I tried supplementing with d3 pills but I felt really sick, fatigued, and depressed from them which is the opposite of what I would have expected it to do. Everytime I stop I feel better. When I start them again I feel sick. After doing this many times I have accepted the fact that the supplement makes me sick. Sunlight seems like a much better source and doesn't make me feel sick but doesn't get my levels up.

Does anyone know exactly why people with dysautonomia have low D levels? It really amazes that in 2013, almost 2014, researches and docs can not identity the role of this hormone in certain conditons and how to deal with it. I don't believe supplementing or just taking it is the answer for a lot of conditons and would argue that it actually makes a lot of conditons worse. You would think we'd be further along in this stuff but it is what it is I guess. Like most medical stuff it's a complete crap shoot. Go figure?!?

Hey Jon,

Could it have been an additive in the supplement that you were taking that made you sick? Perhaps you could try another brand? Also if you were supplementing with D3, you could try D2. It's not as effective since the body needs to convert it into D3, but in your case it might be worth a look. Of course there's also foods that are vitamin D fortified that you can buy.

Good luck!

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I had a very low Vitamin D level last fall, it was 16. It was the first thing I was diagnosed with when I got sick. I'm actually going to get this and my potassium levels re-tested on Friday - I'm really curious to see how I'm doing. I made my husband have his Vitamin D tested a couple months ago and his was 14. He has a hyperthyroid issue that is doing very well now, but he has no POTS-like symptoms like I do. His endocrinologist said his level was only a 5 at one point. From all the doctors I've asked regarding Vitamin D, it doesn't seem to cause problems but it exacerbates problems that are already there. I was hoping getting my Vitamin D up, I might feel better, but I feel the same. Looking forward to seeing what they are now.

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I also have had very deficient D levels. I was at 17 a few months ago and have been down to 13 before. I'm taking 50000 units of D once a week and levels are slowly rising. It's strange that so many of us have this similar issue

I don't think it's really that strange. People with POTS are unlikely to be majorly active outdoors and are often on restricted diets. Therefore the main sources of vitamin D (sunshine, food) maybe out of whack.

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I also have had very deficient D levels. I was at 17 a few months ago and have been down to 13 before. I'm taking 50000 units of D once a week and levels are slowly rising. It's strange that so many of us have this similar issue

I don't think it's really that strange. People with POTS are unlikely to be majorly active outdoors and are often on restricted diets. Therefore the main sources of vitamin D (sunshine, food) maybe out of whack.

Dave,

I think your are right in a way. I think low vitamin d (due to lack of exposure to sunshine) and weird diet due to food intolerances could be a factor in why I'm not getting better from pots. (But I don't think it's why I got pots in the first place).

Those with problems tolerating vitamin d:

For those that have adverse reactions to vitamins it could be because of something else that is in the multi-vitamin pill. It would seem it could be the same with vitamin d. I can tolerate multi-vitamins but only a few different brands. Luckily most of the food intolerance studies have been done in Australia so in this instance I am able to buy the ones without things in them to which I'll react because they've already been 'passed' by Royal Prince Alfred (RPA) Allergies and food intolerances Clinic. For those of you who are struggling with food intolerances and problems with vitamins the fedup.com.au site with Sue Dengate is a good place to start. Just keep in mind that it's really unwise to put yourself on the strict elimination diet without guidance from a dietician and also going so strict can cause one to become even more sensitive to many foods -- as happened to me. Grr.

RPA Allergies and Food intolerance Clinic is supposed to be a world leader in this allergy/intolerance field. But not sure if that's their opinion or the opinion of docs in other countries. LOL

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I work with someone who also works in a doctors office and she says that a lot of the doctor's patients are low in Vit D, so I think it is very common in the general population.

For years, we've been told to avoid the sun and use sunscreen if we are in the sun, so I'm not surprised in the least that a lot of us are deficient.

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Yeah I was going to say, for those who have had an adverse reaction to a vitamin D supplement, it may be worth trying another type. My doctor has said there is no way that the D3 itself could be an issue for me, as it is a naturally occurring hormone in the body, but I am sensitive to chemicals. The first brand I tried seemed to make me extra tired and achy, I switched to another drugstore brand and now I feel fine.

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