Vitamin D deficiency
BabysBaby2003
Posts: 16 Member
My 16 year old daughter was recently diagnosed with a level of 16 of Vit D. She had severe bone acheyness, migraines, and extreme fatigue that has caused a lot of missed days of school. Also, she was chronically ill with sinus infections and general illness. For 2 years I have been trying to find out the cause and thought it may be related to the mono she had. I would love to get all the money I spent going to our doctor back b/c she would constantly say it was depression and she was so wrong. I even took my child to a psychologist who, after 3 visits, told me my daugher was not depressed and in fact is a well rounded, happy child. My family physician argued that she still thought she was depressed! So last month I decided to find a different doctor. We went and he ordered about 20 or so tests. All of them came back normal except she had a severe Vit D deficiency. His office girl told me to put her on 1000iu per day. I put her on 2000iu. When we returned to see him, he said all was normal and didn't know what was wrong with her! I asked about the Vit D and he looked puzzled and double checked the chart. He totally missed it! He said it was slightly low and to put her on 2000iu which is the dose I decided to give her at the time. We left and I was not happy. I decided to do my own research and set her up with my endocrinologist who I think I may just make our primary doctor for now on.
I learned that gel Vit D made from olive oil is far better than the ones made with soy, that a normal level is 50-100..not 30-100 as most doctors who even know about Vit D suggest, that it's good to take K2 with the D3, that calcium will not absorb without Vit D, and that Vit D deficiency is being linked to many disorders and diseases such as autoimmune disorders, weight issues, depression, cancer, and diabetes. I have just ordered a couple of books on Vitamin D deficiency and I ordered Vitamin D3 in 5000iu gel capsules. I now have my daugher taking 2 capsules in the morning (do not take later in the day or you won't sleep!) and I have a feeling the endocrinologist will raise this dose even higher until my daughers level is within normal range. I'm also having mine checked tomorrow and I'm sure I am deficient as well. I've also learned that you can't trust what doctors say if your intuition is telling you there is more going on. We know our bodies better than anyone and a mother knows when to dig deeper for her childs sake. I mentioned to my cardiologist about my daughters diagnosis and that I am being tested also. He didn't know much about it but said he's been hearing a lot of scuttle butt about it. There is even Vitamin D Council that you can go to their website and sign up for their newsletter.
I hope that any of this information helps someone out there that may be struggling but not getting any answers to why they feel so bad. I am not a doctor and can't give medical advice, but I can certainly help possibly send you in the right direction as to where to start.
I learned that gel Vit D made from olive oil is far better than the ones made with soy, that a normal level is 50-100..not 30-100 as most doctors who even know about Vit D suggest, that it's good to take K2 with the D3, that calcium will not absorb without Vit D, and that Vit D deficiency is being linked to many disorders and diseases such as autoimmune disorders, weight issues, depression, cancer, and diabetes. I have just ordered a couple of books on Vitamin D deficiency and I ordered Vitamin D3 in 5000iu gel capsules. I now have my daugher taking 2 capsules in the morning (do not take later in the day or you won't sleep!) and I have a feeling the endocrinologist will raise this dose even higher until my daughers level is within normal range. I'm also having mine checked tomorrow and I'm sure I am deficient as well. I've also learned that you can't trust what doctors say if your intuition is telling you there is more going on. We know our bodies better than anyone and a mother knows when to dig deeper for her childs sake. I mentioned to my cardiologist about my daughters diagnosis and that I am being tested also. He didn't know much about it but said he's been hearing a lot of scuttle butt about it. There is even Vitamin D Council that you can go to their website and sign up for their newsletter.
I hope that any of this information helps someone out there that may be struggling but not getting any answers to why they feel so bad. I am not a doctor and can't give medical advice, but I can certainly help possibly send you in the right direction as to where to start.
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Replies
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I've been taking a daily dose of Vitamin D3 for well over a year now and have seen many Good Things from it - I was not sick at all this past winter (even in Iowa!) and I didn't go through the typical winter blahs that hit usually at the end of January, beginning of February.
Oh yeah....it's good stuff!0 -
My doctor suspected a Vitamin D deficiency and ordered a blood test. I was very deficient, and she ordered 2,000 IU supplements daily. A follow-up blood test showed I was still deficient so she had me begin 4,000 IU daily. After that, my levels returned to normal. I now take 2,000 IU of Vitamin D every day.
The reasons she suspected a Vitamin D deficiency were my depression, ache-y joints, and asthma recurrence. Yes - Vitamin D deficiency can lead to all of these problems.
I'm happy to say that none of those problems exist for me today, thanks to some Vitamin D supplements.0 -
There's a whole lot of over reaction in this post. I'm just going to go ahead and throw down the gauntlet here. I'm a cancer survivor, and while my Vit D levels were extremely low during the time of cancer diagnosis and treatment (probably much lower than your daughter's), no one had the audacity to throw out words like "severe." Please. I was given a script for 5,000 miu's (or whatever those letters are), and never filled it. I just bought some 1,000 miu stuff @ rite aid and make sure I get plenty of sun. Most people in the northern US would be "severely low" during the winter months anyway when no one gets sun.
You need to let go a little. It's nice to know she should get a little more Vit D but it's really not a huge deal.0 -
Not sure if you already know this but it's also good to make sure you take it with a meal that includes fats (normally toted as largest meal of the day but any meal is fine as long as there are fats) because Vit D is fat soluble. The one I take is combined with fish oil so it's a kill two birds with one stone kind of deal.
Good for you for doing your homework and being assertive!
I've never heard of not taking it at night - I take mine after dinner and have had no trouble sleeping. Maybe that's an individual thing?
Mine was low for years and I honestly don't notice a difference now that I'm taking a regular dose. I'm one of those lucky pale folks who just doesn't absorb it via the sun regardless of how long I'm outside. Even argued with my doc about needing it but she finally convinced me to give it a try due to many of the issues listed in the OP. I'm curious to see what my levels are like when I get tested again.0 -
Yep, found out about my deficiency when I took a nap after work and didn't wake up until the next morning when I had to go back to work. Not sure what my 9 year old did all evening and night but it turned out well. Get more sun!0
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Yep, found out about my deficiency when I took a nap after work and didn't wake up until the next morning when I had to go back to work. Not sure what my 9 year old did all evening and night but it turned out well. Get more sun!
Is it wrong that your post made me laugh out loud? I'm glad you're ok! 0 -
I live in Seattle and take 2,000 IU's daily. I take one pill in the morning, and one pill at night.0
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I'm also having mine checked tomorrow and I'm sure I am deficient as well. I've also learned that you can't trust what doctors say if your intuition is telling you there is more going on.
My intuition tells me that someone with a medical license knows more than you do. My intuition also tells me that you are going to keep looking for a doctor who tells you what you already decided is true.0 -
Vitamin D deficiency sadly is super common. I also had a very low blood test (luckily my bone scan came back good). My doc had me on 50,000 each day for 2 weeks to build my levels back up and then after that, 5,000 daily dosage to keep them up. I went from a 12 to a 78. Vitamin D is a really important vitamin and can screw up a lot of different processes if it's low (ignore that terrible cancer survivor's advice). If you can't get enough sun, the dietary supplement is the way to go.0
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I broke my foot and it didn't heal. My orthopedic surgeon put me on Vitamin D 6,000 IU's daily. I started the Vitamin D and my foot began to heal. Who knew....0
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It is becoming more known and a more common problem. I think its my husband's problem in the winter, but he won't listen to me. He gets sluggish and doesn't do anything, but once it gets sunnier and warmer out he starts getting up and doing stuff.
The more we stay indoors and don't get out in the sun the more common the problem. When I was a kid, you were outside any sunny day, even in the snow. You walked to and from school, you had outdoor recess always. Nowadays, kids are playing video games in the house, no one walks anywhere they get a ride, etc. (I am talking US) Get out in the sun, no sunblock for at least 20 minutes everyday. besides the supplement. the sun is the best source for vitamin D. It isn't always possible, get the boost for sure.0 -
There's a whole lot of over reaction in this post. I'm just going to go ahead and throw down the gauntlet here. I'm a cancer survivor, and while my Vit D levels were extremely low during the time of cancer diagnosis and treatment (probably much lower than your daughter's), no one had the audacity to throw out words like "severe." Please. I was given a script for 5,000 miu's (or whatever those letters are), and never filled it. I just bought some 1,000 miu stuff @ rite aid and make sure I get plenty of sun. Most people in the northern US would be "severely low" during the winter months anyway when no one gets sun.
You need to let go a little. It's nice to know she should get a little more Vit D but it's really not a huge deal.
You really couldn't know it is not a huge deal. Vitamin D deficiency could be a sign of malabsorption issues, which can be a very huge deal. Anyone experiencing symptoms should see a doctor.0 -
Just about anyone north of Texas is going to be Vitamin D deficient. Especially seasonally. We see it ordered a ton in our lab. Everyone is low - just varying degrees. If you live in the northern half of the US, you may as well just take a supplement, in my opinion. I started taking 3,000 units this winter after my ankle fracture. Not sure if it helped the healing, but my mental health improved within 2-3 weeks. Very noticeably.0
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I'm also having mine checked tomorrow and I'm sure I am deficient as well. I've also learned that you can't trust what doctors say if your intuition is telling you there is more going on.
My intuition tells me that someone with a medical license knows more than you do. My intuition also tells me that you are going to keep looking for a doctor who tells you what you already decided is true.
As I said, I'm not a doctor...just sharing what I've learned. And, nope, not "doctor shopping". Just sick of being told nothing is wrong with my child when obviously there is. As also stated, we are going to an endocrinologist who specializes in this field and I am very satisfied with her opinions. It was a journey to get there but had I just taken what the first doctor said or had not the second doctors nurse called with the results so I knew them before our visit, I would still not have any answers and my child would still be suffering. This post was not meant to be negative..just enlightenment.0 -
I'm also having mine checked tomorrow and I'm sure I am deficient as well. I've also learned that you can't trust what doctors say if your intuition is telling you there is more going on.
My intuition tells me that someone with a medical license knows more than you do. My intuition also tells me that you are going to keep looking for a doctor who tells you what you already decided is true.
As I said, I'm not a doctor...just sharing what I've learned. And, nope, not "doctor shopping". Just sick of being told nothing is wrong with my child when obviously there is. As also stated, we are going to an endocrinologist who specializes in this field and I am very satisfied with her opinions. It was a journey to get there but had I just taken what the first doctor said or had not the second doctors nurse called with the results so I knew them before our visit, I would still not have any answers and my child would still be suffering. This post was not meant to be negative..just enlightenment.
It's important to be an advocate for your own health. And intuitive knowledge is important too. A lot of people experience similar things with thyroid disorders. It took over 10 years until I finally got the correct diagnosis after my first suspicions -- and it was because I finally took my health seriously, did my own research and challenged my then-doctors on several issues. Western medicine often focuses on fixing catastrophes (broken bones, open wounds, cancer, etc.) and overlooks more quality of life issues until they get very, very bad.0 -
My 16 year old daughter was recently diagnosed with a level of 16 of Vit D. She had severe bone acheyness, migraines, and extreme fatigue that has caused a lot of missed days of school. Also, she was chronically ill with sinus infections and general illness. For 2 years I have been trying to find out the cause and thought it may be related to the mono she had. I would love to get all the money I spent going to our doctor back b/c she would constantly say it was depression and she was so wrong. I even took my child to a psychologist who, after 3 visits, told me my daugher was not depressed and in fact is a well rounded, happy child. My family physician argued that she still thought she was depressed! So last month I decided to find a different doctor. We went and he ordered about 20 or so tests. All of them came back normal except she had a severe Vit D deficiency. His office girl told me to put her on 1000iu per day. I put her on 2000iu. When we returned to see him, he said all was normal and didn't know what was wrong with her! I asked about the Vit D and he looked puzzled and double checked the chart. He totally missed it! He said it was slightly low and to put her on 2000iu which is the dose I decided to give her at the time. We left and I was not happy. I decided to do my own research and set her up with my endocrinologist who I think I may just make our primary doctor for now on.
I learned that gel Vit D made from olive oil is far better than the ones made with soy, that a normal level is 50-100..not 30-100 as most doctors who even know about Vit D suggest, that it's good to take K2 with the D3, that calcium will not absorb without Vit D, and that Vit D deficiency is being linked to many disorders and diseases such as autoimmune disorders, weight issues, depression, cancer, and diabetes. I have just ordered a couple of books on Vitamin D deficiency and I ordered Vitamin D3 in 5000iu gel capsules. I now have my daugher taking 2 capsules in the morning (do not take later in the day or you won't sleep!) and I have a feeling the endocrinologist will raise this dose even higher until my daughers level is within normal range. I'm also having mine checked tomorrow and I'm sure I am deficient as well. I've also learned that you can't trust what doctors say if your intuition is telling you there is more going on. We know our bodies better than anyone and a mother knows when to dig deeper for her childs sake. I mentioned to my cardiologist about my daughters diagnosis and that I am being tested also. He didn't know much about it but said he's been hearing a lot of scuttle butt about it. There is even Vitamin D Council that you can go to their website and sign up for their newsletter.
I hope that any of this information helps someone out there that may be struggling but not getting any answers to why they feel so bad. I am not a doctor and can't give medical advice, but I can certainly help possibly send you in the right direction as to where to start.
I had a Vitamin D level of 6 a few years ago and have gotten it up to 34 by taking 1000 iu tablets a day. My endocronoligist likes to joke that everyone north of Florida is deficient in Vitamin D. Can you cite your source (or sources) that say that 30 -100 isn't ok, that 50 - 100 is normal because I've got a few top notch doctors who do a fabulous job taking care of me who say 30+ is fine.
Dial it back a bit and chill. A vitamin D deficiency isn't the end of the world.0 -
I live in a tropical location that has sun all year, but my Vitamin D levels were low. Once when I tested it, it was 17! Such a shocker because we're an outdoorsy family. Being outside in the sun between 10 am and 4 pm is no guarantee that your Vitamin D levels are adequate. It also takes a long time to get the plasma Vitamin D levels to where they should be. My doctor wanted my D3 levels at 50 at a minimum and 80 ideally.
I'm a cancer survivor too.0 -
There's a whole lot of over reaction in this post. I'm just going to go ahead and throw down the gauntlet here. I'm a cancer survivor, and while my Vit D levels were extremely low during the time of cancer diagnosis and treatment (probably much lower than your daughter's), no one had the audacity to throw out words like "severe." Please. I was given a script for 5,000 miu's (or whatever those letters are), and never filled it. I just bought some 1,000 miu stuff @ rite aid and make sure I get plenty of sun. Most people in the northern US would be "severely low" during the winter months anyway when no one gets sun.
You need to let go a little. It's nice to know she should get a little more Vit D but it's really not a huge deal.
I'd say a vitamin that is responsible for the activation of over 900 genes a pretty big deal.0 -
Vitamin D deficiency sadly is super common. I also had a very low blood test (luckily my bone scan came back good). My doc had me on 50,000 each day for 2 weeks to build my levels back up and then after that, 5,000 daily dosage to keep them up. I went from a 12 to a 78. Vitamin D is a really important vitamin and can screw up a lot of different processes if it's low (ignore that terrible cancer survivor's advice). If you can't get enough sun, the dietary supplement is the way to go.
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I'm glad your bone levels were good. Unfortunately, I subsequently found out that I have osteopenia - I can't blame it completely on Vitamin D deficiency, but it certainly didn't help.0 -
My 16 year old daughter was recently diagnosed with a level of 16 of Vit D. She had severe bone acheyness, migraines, and extreme fatigue that has caused a lot of missed days of school. Also, she was chronically ill with sinus infections and general illness. For 2 years I have been trying to find out the cause and thought it may be related to the mono she had. I would love to get all the money I spent going to our doctor back b/c she would constantly say it was depression and she was so wrong. I even took my child to a psychologist who, after 3 visits, told me my daugher was not depressed and in fact is a well rounded, happy child. My family physician argued that she still thought she was depressed! So last month I decided to find a different doctor. We went and he ordered about 20 or so tests. All of them came back normal except she had a severe Vit D deficiency. His office girl told me to put her on 1000iu per day. I put her on 2000iu. When we returned to see him, he said all was normal and didn't know what was wrong with her! I asked about the Vit D and he looked puzzled and double checked the chart. He totally missed it! He said it was slightly low and to put her on 2000iu which is the dose I decided to give her at the time. We left and I was not happy. I decided to do my own research and set her up with my endocrinologist who I think I may just make our primary doctor for now on.
I learned that gel Vit D made from olive oil is far better than the ones made with soy, that a normal level is 50-100..not 30-100 as most doctors who even know about Vit D suggest, that it's good to take K2 with the D3, that calcium will not absorb without Vit D, and that Vit D deficiency is being linked to many disorders and diseases such as autoimmune disorders, weight issues, depression, cancer, and diabetes. I have just ordered a couple of books on Vitamin D deficiency and I ordered Vitamin D3 in 5000iu gel capsules. I now have my daugher taking 2 capsules in the morning (do not take later in the day or you won't sleep!) and I have a feeling the endocrinologist will raise this dose even higher until my daughers level is within normal range. I'm also having mine checked tomorrow and I'm sure I am deficient as well. I've also learned that you can't trust what doctors say if your intuition is telling you there is more going on. We know our bodies better than anyone and a mother knows when to dig deeper for her childs sake. I mentioned to my cardiologist about my daughters diagnosis and that I am being tested also. He didn't know much about it but said he's been hearing a lot of scuttle butt about it. There is even Vitamin D Council that you can go to their website and sign up for their newsletter.
I hope that any of this information helps someone out there that may be struggling but not getting any answers to why they feel so bad. I am not a doctor and can't give medical advice, but I can certainly help possibly send you in the right direction as to where to start.
I had a Vitamin D level of 6 a few years ago and have gotten it up to 34 by taking 1000 iu tablets a day. My endocronoligist likes to joke that everyone north of Florida is deficient in Vitamin D. Can you cite your source (or sources) that say that 30 -100 isn't ok, that 50 - 100 is normal because I've got a few top notch doctors who do a fabulous job taking care of me who say 30+ is fine.
Dial it back a bit and chill. A vitamin D deficiency isn't the end of the world.
I don't have any cites, but my doctor also wants me higher. He told me over 30 was "fine" but not optimal for most people. So, he recommends at least 70 if possible (as there is only potential benefit from that higher level and no detriment).0 -
I don't know. I had a "severe" level as well, I was at a 14. But I had no symptoms and though I took the recommended 5000 dosage and continue to take 2000 now that I am "normal" I still haven't noticed any difference in how I feel. So while I agree that it was important to get it to a better level, it didn't rock my world or anything... Maybe it does cause issues and I just got lucky? :huh:0
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It sounds like your daughter has developed Chronic Fatigue Syndrome following the Epstein-Barr infection (mono) to me. Although the vast majority of people recover fully after a mono infection, a small percentage don't and contract CFS. I was one of the unfortunate few. Getting her Vitamin D levels normalised is a good idea, but the deficiency may not be the cause of all of her symptoms. I hope she gets some answers soon!0
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I was vitamin D deficient with symptoms that mimicked hypothyroidism. I was always cold, tired and my hair was falling out by the handfuls. The thyroid specialists was referred to was quick to check me for vitamin D deficiency. I now take 4000 iu and my hair is growing back. I am so thankful for that!0
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Okay, i feel some of those things sometimes...I'll get my vitamin D checked, I'll try not to alienate any dr's by panicking in the process though.
also, just a thought, I suffered from migraines as a child and as an adult removed any and all migriane "triggers" systematically from my diet. turns out caffeine was the culprit for me. the biggest one. if I had known this as a child I would have not consumed caffeine. (in the form of soda and iced tea, etc.)
talk to her dr about this and other migraine triggers and follow thier suggestions about how to wean off because if these are a problem for her cold turkey will be painful and trigger migraines. i quit under the strict instructions of a neurologist and was migraine free for 2 years. i recently 'fell off the wagon" and have to quit again but at least when my levels are steady for caffeine intake, the headaches are way less of an issue.
try to remain emotion free as possible as emotions get in the way of logical thinking which you need to sort through all this.0 -
My husband had similar symptoms to the OP's daughter, and was put on a daily high dosage of Vit D after blood tests showed it was very low.
Supplements didn't change his levels after 6 months.
Further tests have found that he has *some* kind of immune disorder (possibly Rheumatoid Arthritis, maybe MS) and what looks like sub-clinical Hashimoto's (ultrasound showed thryroid has been degraded). The Dr's did say that constant low Vit D can be a symptom of a Cancer.
BTW I have no idea if the Vit D levels have come up, it's been 12 months now. He has has started DMARD's for the joint inflammation/pain, although no inflammation showed on his recent MRI, it IS helping a lot. The Dr's still don't know what's making him ill.
Just throwing this info out there... it's a complex issue.0 -
My husband had similar symptoms to the OP's daughter, and was put on a daily high dosage of Vit D after blood tests showed it was very low.
Supplements didn't change his levels after 6 months.
Further tests have found that he has *some* kind of immune disorder (possibly Rheumatoid Arthritis, maybe MS) and what looks like sub-clinical Hashimoto's (ultrasound showed thryroid has been degraded). The Dr's did say that constant low Vit D can be a symptom of a Cancer.
BTW I have no idea if the Vit D levels have come up, it's been 12 months now. He has has started DMARD's for the joint inflammation/pain, although no inflammation showed on his recent MRI, it IS helping a lot. The Dr's still don't know what's making him ill.
Just throwing this info out there... it's a complex issue.
I hope they find answers and a diagnosis for your husband soon!0 -
I also had chronic migraines, a thyroid issue, and autoimmune disease. I take 5000 iu/day and it's taken me years to get it back to a normal level. It took so long, my dr kept testing me for celiacs because I wasn't absorbing it well. I went gluten free on my own and have felt much better...that's when my levels really started rising too. I'd look into leaky gut and healing it. There are many things she can do and she's young, so it's a good time...she will heal much faster. Good luck!0
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I'm in the sun a lot, don't use sunscreen (whoops) and have fairly tan skin so I did not suspect a vitamin D deficiency. Recent blood work and it shows that I'm low, which makes sense with some of the recent symptoms I've had in the past year. Prescribed 50,000 IUD/week.0
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also, just a thought, I suffered from migraines as a child and as an adult removed any and all migriane "triggers" systematically from my diet. turns out caffeine was the culprit for me. the biggest one. if I had known this as a child I would have not consumed caffeine. (in the form of soda and iced tea, etc.)
Especially the sinus issues. I had chronic sinus infections for 20+ years until an ENT who was also an allergist tested me for food allergies/sensitivities. My sinus infections were the results of GERD (not an upset stomach the result of post-nasal drip, as I'd always thought.)
As a kid, my parents told me my stomach aches were between my ears and caused by stress. I believed this into adulthood. Nope, they were due to tomatoes, onions, tree nuts, etc. So, get her a tine test for food sensitivities. It may be the trick for her.
I've been sinus infection free ever since I started eliminating tomatoes and onions -- which presents some serious culinary issues for a foodie but I've got some work-arounds I can share. Message me if you are interested.0 -
Given that you have to take A HUGE amount of it for it to get toxic, I have no problem recommending that most people get more than they do now. There's a reason why Europeans evolved fair skin... those with darker skin were dying due to Vit D deficiencies. It's a "master hormone" vitamin, and is used for so much more than building bone density. It has huge effects on the immune system. There's no need to do a daily dose. I take a single 10,000 IU pill per week. When I started doing that, the tendinitis I had in my wrist went away.0
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