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Old 04-12-2010, 06:41 AM   #1
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low vitamin D

I'm hoping those of you who have experience with low vitamin D can offer me some insight. I am in my mid 30s and have been feeling lousy since I was 29. I am so ridiculously tired ALL the time, to the point where I was put on adderall a few years ago because I just couldn't stay awake.
I also have tons of other vague symptoms, including sometimes having sore muscles and burning feet, I feel weak, I have digestion trouble, and I retain TONS of water, so much so that my neck sometimes even feels like it's got fluid in it, and my ankles are always swollen no matter what time of month it is.

Over the years every test came back normal, including tests for thyroid, celiac disease, diabetes, etc. I've been told my iron levels, sed rate, liver function, kidney function, etc are all fine.

I even had a sleep study done. One sleep doctor said it was normal, and then at follow up with a second doctor she was absolutely insistent that I had narcolepsy, which all my other doctors scoffed at. (I don't think I have narcolepsy either, from what I've read about it).

Finally after all these years my gynecologist of all people decided to test my vitamin D level. I fully expected to get a note from her telling me it was in the normal range. I do live in the northeast US, so getting enough D from the sun for half the year is impossible, but in the summer I do spend lots of time outdoors, and I'm not great about wearing sunscreen - I usually on use it on my face. I eat tons of foods that are vitamin D fortified - and although I've read it's difficult to fortify foods with a sufficient amount of vitamin D, I think I eat enough of them, on top of getting sufficient sun exposure, that deficiency didn't seem like a possibility.

Lo and behold, my level came back at 15ng/mL. The range for the lab that did the test said the normal range was 30 -100ng/mL.

Could my level have been this low for years, and I just didn't know it?
Could this low level be responsible for all my unexplained symptoms? Could it be why I'm so tired all the time?

Also, for the past 2 years I've been having episodes of hair loss, which have been attributed to going off and then back on the birth control pill. But not only does my hair fall out, I find that some of the pieces are very short and don't have any follicle, as if they're broken. To me this seems like it could be a nutritional deficiency - if I'm deficient in vitamin D should I be tested for other deficiencies as well? I had my B12 level tested just over 3 years ago and it was 451 (with a normal range of 200 - 1100). My last ferritin test 2 years ago was 56.4 (normal range 10 - 154), which was actually higher than the test I'd had the year before (which was 46), because I started eating lean red meat about once a week, which I hadn't done before.

I was prescribed 50,000 IU vitamin D (and I'm aware of the thinking that this prescription D2 is not as helpful as D3, but I've read a bunch of stuff on PubMed and I'm comfortable taking this for the 8 weeks and getting retested like my doctor said, and then I'm going to start taking over the counter D3).

I would love to hear from anyone who's been treated for low vitamin D, what your symptoms were and what if anything improved after starting treatment, and how long before you saw any improvements. And also what you take now for over the counter supplementation, how many IUs, etc.

Thanks in advance!!

 
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Old 04-12-2010, 08:14 AM   #2
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Re: low vitamin D

I am interested in that answer also. I am taking 50,000 i.u. also, mu reading came in at 22, so I was surprised I was low, I did not feel tired, etc. So side affects were not there for me, I was just surprised. I am taking the 50,000 i.u. and I don't feel any different, but like I said, I didn't feel any different before, I was just having a physical. So I have ordered d3 1000. Does anyone think that is the right amount, or too much? When I am finished with the 50,000 i.u. I am going to start the D3. Tiredpoet, have you had your thyroid checked, since you are losing hair, I would think it is your thyroid. Let me know how you are doing.

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Old 04-12-2010, 09:33 AM   #3
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Re: low vitamin D

Sounds like a possible thyroid problem to me, too.
My daughter had all the thyroid tests done with blood and came back fine time after time.

Doctor noticed her neck looking "thick" and sent her for an ultrsound. The report came back that she had some nodules.

She has half of her thyroid now because of surgery and is Hashimoto's. *and intolerant to gluten!

Hope you find out soon and take care!

 
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Old 04-12-2010, 09:51 AM   #4
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Re: low vitamin D

Thanks for both of your replies - I've had my thyroid tested every year since symptoms began. My TSH at last check was 1.17, which apparently is so optimal I should feel great.
But I don't, I feel lousy. Since vitamin D is low and nothing else is apparently wrong I'm assuming the symptoms are related to the low vitamin D.

 
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Old 04-14-2010, 09:37 PM   #5
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Re: low vitamin D

I don't know about the vitamin D symptoms, but I noticed that your ferritin level was a 56 and that could be the cause of your hair loss. I have a similar level for ferritin, but I have been experiencing hair loss, fatigue, and lightheadedness for months. Finally, I went to the dermatologist and was told that although my ferritin was in the normal range (as you indicated), the level needed for hair growth is at least 70. I've been put on iron supplements because event though the iron tests come back normal, that's what low ferritin means. You should consider seeing a dermatologist, I found it really helpful.

 
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Old 04-15-2010, 09:23 AM   #6
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Re: low vitamin D

Thanks lana222. I did see a derm the first time I experienced diffuse hair loss, but boy did I pick the wrong guy! Every single appointment I'd sit in the room waiting for him to come in, and he'd open the door and say, "So, how's your acne doing today?" Um, I'm not here about acne, my hair's falling out - just like it was at my last visit, and the one before that! When I finally got him to remember and take notice that I was there about my hair, he said it was due to switching birth control pills (which I suppose is possible) and never offered any advice.

I then started taking prenatal vitamins to get more iron and also other nutrients that would be good for my hair. The hair loss seemed to stop, but then a few months ago it started thinning again. I'm hoping correcting the vitamin D deficiency will help. I am going to request to have my iron checked again too though, to see if my levels have improved at all. I would love to get them above 70 if possible.

 
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Old 05-26-2010, 06:21 AM   #7
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Re: low vitamin D

Do you take a multivitamin (eg Centrum) and iron each day? It would be well worth trying those for a while and seeing if they make a difference, as well as your vitamin D

 
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Old 06-04-2010, 10:12 PM   #8
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Re: low vitamin D

It is very common to be low in D. I was diagnosed several months ago and, I hope this is not just coincidence, but since I've been on supplements I've not experienced the sporadic depression episodes that have hounded me for years.

Good luck!

 
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Old 06-06-2010, 12:03 PM   #9
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Re: low vitamin D

I am also being treated for Vit D difficiency. My levels are at 13. I have been on therapy for one year and my gyn is also the one who checked my levels. At that time I was at 15 and she put me on 100,000 Units, taking one 50,000 twice a week. I recently went in for a check up and she reduced my dose to once a week at 50,000. Well I developed severe muscle cramps in my legs and especially when I went to bed. I was also told to take 1500 mg of Calcium a day as well, which I kept forgetting to take. Please remember to take the Calcium, the Vit D has to have it to work right, so I am told. To try and make this short, my primary thought I was reacting to the Statin which can also cause muscle cramps after long term use, and my gastro thought it might be my ulcer med. I took a dose of my vit D and the cramps went away. I was sent to a rumatologist and she did a work up on me and my vit d levels fell to 13 even though I was on 50,000 units a week. So now I am back up to 100,000 units a week and feel better however I am still a little stiff. All this medication that is becoming normal to be on such as the statins, is what I think is causing some of the vit difficieny in people. I am off everything except my Vit D, and my hormone therapy now and am starting to feel good again. I was on statins for at least five years and they worked great, however I do not know if they have tested these statins for depleting your body of other things besideds fat, such as Vit D. This may be why so many people are difficient these days. I do get sun as I own a pool and am always working outside, so it does not make sense that I am not getting enough D naturally. I am concerned taking such large doses of Vitamins. My GYN said I would have to take them the rest of my life.

 
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Old 08-18-2010, 09:48 AM   #10
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Re: low vitamin D

tired,

Is this still of interest to you?

You mention having your TSH tested but what about the very important - Free T3 and Free T4? Your symptoms sound very hypothyroid ... to me. You might post your numbers on the Thyroid board here as some very knowledgeable people hang out there.

Jen

 
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Old 08-19-2010, 12:26 PM   #11
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Re: low vitamin D

Hi all, new b12 sufferer here. Just started injections 3 days ago for a 197 starting value on the 211-945 lab scale. Have had all symptoms listed here over the last month and a half and am worn out. So far I have 1/2 good days and 1/2 bad days with no rhyme or reason. Would like to know when things might level out? What are your experiences with the cessation of symptoms. Most aggravating right now are the tremors (feel like old man wobbling around), fasciculations, cramps, jolts, blurred vision, and shakiness. Good luck to all.

 
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Old 11-04-2010, 11:18 PM   #12
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Exclamation Re: low vitamin D

Quote:
Originally Posted by tiredpoet View Post
I'm hoping those of you who have experience with low vitamin D can offer me some insight. I am in my mid 30s and have been feeling lousy since I was 29. I am so ridiculously tired ALL the time, to the point where I was put on adderall a few years ago because I just couldn't stay awake.
I also have tons of other vague symptoms, including sometimes having sore muscles and burning feet, I feel weak, I have digestion trouble, and I retain TONS of water, so much so that my neck sometimes even feels like it's got fluid in it, and my ankles are always swollen no matter what time of month it is.

Over the years every test came back normal, including tests for thyroid, celiac disease, diabetes, etc. I've been told my iron levels, sed rate, liver function, kidney function, etc are all fine.

I even had a sleep study done. One sleep doctor said it was normal, and then at follow up with a second doctor she was absolutely insistent that I had narcolepsy, which all my other doctors scoffed at. (I don't think I have narcolepsy either, from what I've read about it).

Finally after all these years my gynecologist of all people decided to test my vitamin D level. I fully expected to get a note from her telling me it was in the normal range. I do live in the northeast US, so getting enough D from the sun for half the year is impossible, but in the summer I do spend lots of time outdoors, and I'm not great about wearing sunscreen - I usually on use it on my face. I eat tons of foods that are vitamin D fortified - and although I've read it's difficult to fortify foods with a sufficient amount of vitamin D, I think I eat enough of them, on top of getting sufficient sun exposure, that deficiency didn't seem like a possibility.

Lo and behold, my level came back at 15ng/mL. The range for the lab that did the test said the normal range was 30 -100ng/mL.

Could my level have been this low for years, and I just didn't know it?
Could this low level be responsible for all my unexplained symptoms? Could it be why I'm so tired all the time?

Also, for the past 2 years I've been having episodes of hair loss, which have been attributed to going off and then back on the birth control pill. But not only does my hair fall out, I find that some of the pieces are very short and don't have any follicle, as if they're broken. To me this seems like it could be a nutritional deficiency - if I'm deficient in vitamin D should I be tested for other deficiencies as well? I had my B12 level tested just over 3 years ago and it was 451 (with a normal range of 200 - 1100). My last ferritin test 2 years ago was 56.4 (normal range 10 - 154), which was actually higher than the test I'd had the year before (which was 46), because I started eating lean red meat about once a week, which I hadn't done before.

I was prescribed 50,000 IU vitamin D (and I'm aware of the thinking that this prescription D2 is not as helpful as D3, but I've read a bunch of stuff on PubMed and I'm comfortable taking this for the 8 weeks and getting retested like my doctor said, and then I'm going to start taking over the counter D3).

I would love to hear from anyone who's been treated for low vitamin D, what your symptoms were and what if anything improved after starting treatment, and how long before you saw any improvements. And also what you take now for over the counter supplementation, how many IUs, etc.

Thanks in advance!!
Hair loss, iron deficiency, ferritin levels should be up over 75 I've read to correct that. Potassium defieincy I suspect would contribute to water retention since it takes salt out of your body and balance it out(do you eat 7 bananas per day to get enough? Nope, read up take lots! I hear we are all deficient based on the US diet and it can cause very long-term damage to your heart to be stay potassium deficient).

 
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Old 11-11-2010, 12:25 PM   #13
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Re: low vitamin D

The body does not use D2 the same way it does D3. Vitamin D3 is more readily absorbed and will improve levels, while taking D2 has virtually no effect on serum 25 hydroxyvitamin D after a week or two, levels usually remain what they were before vitamin D therapy was started.

Many/most of the symptoms described by the original poster could be from a severe vitamin D deficiency as well as hypothyroid. The only way to know if it's Vit D deficiency is to get the levels up and see how the symptoms abate. I myself showed all the classic symptoms of being hypothyroid for years, only to have all labwork come back in perfect ranges of normal, and I would even pay out of pocket to get the free T3 and free T4 readings as well.

I am not sure what my Vit D baseline was, but I supplemented with 12,000 IU daily for 7 months only to find that I had brought my levels up to 45. I found noticed a great change in my physical being, most notably after 5 months of supplementation.

1,000 IU is quite a low starting dose, I would think 5,000 IU might be a little more effective having low levels. As long as you are getting bloodwork done every 3 months or so to see where you are at there should be no problems. Just be sure not to dose later in the afternoon as Vit D can have an energizing effect, and be sure you take it with food to help with absorption as it is fat soluble. It is also recommended to be taking Magnesium along with the Vit D, especially if you are taking a calcium supplement, many calcium supplements are coupled with Mag.

Last edited by mellowfish; 11-11-2010 at 12:25 PM.

 
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Old 11-13-2010, 10:15 PM   #14
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Re: low vitamin D

To say that D2 has no effect is utterly ridiculous. D3 is a better choice, but D2 is not an inert compound.

You can buy 10, 000 iu capsules of D3 quite cheaply (NSI is a good brand that can be brought online, a years supply will cost you about 15 dollars)

There are also liquids that contain several thousand IU's per drop if you prefer a liquid.

Take the supplement with some fat to allow adsorbsion (a spoonfull of peanut butter for example)

Given your other concerns, a daily iron tablet (65mg) and a multivitamin/mineral such as Centrum might also be wise, for a few months trial to see if they help.

of course, let your doctor know what supplements you are taking

Last edited by jonnstar; 11-13-2010 at 10:19 PM.

 
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Old 01-30-2012, 05:54 PM   #15
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Re: low vitamin D

tiredpoet - I was wondering if you have any success with the vitamin D. My situation sounds exactly like yours - normal thyroid, hairloss etc. I used to have a lot of blonde hair and now it is so thin I hate it! I was recently told that I was vitamin D deficient but i'm wondering if the vitamin D worked for you and if you noticed a change. Or if you had any other solutions or tests done? Anything you can share on your progress would be really appreciated

 
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