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Hello. I just joined this forum because of recommendation from another forum. I just found out I was vitamin D deficient with a level of 15.2 on a scale of 30-100. I've now heard even 30 is low. Anyway, I've been struggling for months with fatigue, weakness in workouts(quit working out actually), muscle and joint pain, 'erectile problems, elevated BP, major depression, gained 8 lbs, , dry skin, etc…. I'm on trt and thought for sure I was having E2 issues. Tried lowering my dose. Didn't help. Took a.bunch of exemestane and I'm sure totally depleted my estrogen for a while. I just never recovered and finally figured it can't be E2 issues. Had them checked and they were at 39 on a scale of like 5-65. Had a sleep study. Not that. Lymes test not that. My dr said lets check Vitamin d leveles. Ok, it can't be that. Really losing any hope. People were thinking it's just in my head. Very frustrated by that thinking. Well it turned out i am Vitamin d deficient. Now what? 2 weeks ago I started taking 50,000 iu of D3. Is this going to bring me back? Obviously don't really feel anything yet. I hear it can take months. I get rechecked in 3 months. I'm not that worried about numbers but more about symptoms and getting my life back. Anyway, it's been really rough. Any of you with similar experiences or any insight? I really don't know what to hope for or what to expect. Thank you much

Asked by  JBone on September 23, 2017

Answers
  •  JBone on

    See title

    Answered by  JBone on
  •  IAW on

    The first thing I have to ask is this. If you live in the USA the chances are the 50,000iu once a week may be D2 and NOT D3. You need to figure out which one you are taking and tell me. This is extremely important!
    Next how much do you weigh total! How much Vitamin D to take also goes by weight.
    Don’t panic you should be able to correct all of your issues/symptoms.
    I look forward to the above answers and I can then better assist you!

    Answered by  IAW on
  •  JBone on

    Thank you so much. My dr prescribed me D2. I found out D3 was better and am now taking that at 50,000 a week. I weigh 195 now after gaining 8 lbs during this set back.
    Thanks for the hope.

    Answered by  JBone on
  •  IAW on

    Please read https://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/. It is very important!
    The next thing is that science has already proven that it is better to take Vitamin D daily and not weekly or worse monthly. So if possible switch the 50,000iu to a smaller daily amount. (If money is an issue I will work with the 50’s. Something is better than nothing and maybe you can use them up later. For now taking daily may speed up your recovery.)
    The 50,000iu is about 7-8000iu a day. When you are deficient it takes more on a daily basis to correct the deficiency and then later you take a maintenance dosage. This is usually 5000iu for the average weight of 150lbs. For every 25 lbs over, take an additional 1000iu. So for you that would be a maintenance of minimum 7000iu. If you do not take the maintenance dosage, your levels will plunge again.You really want a level of 50ng/ml or better.
    So 10,000iu a day is the safe “official” amount to take. You would have to take 40,000iu or more “a day” before you “may” become toxic with too much Vitamin D which means hypercalcemia. There is no lasting harmful affects but you do have to stop the Vitamin D until your levels decrease.
    You could take the 10,000iu a day or if you want too, you can try 15,000iu a day. If in the 3 month time frame you feel better, then cut it back to 10,000iu. If OK on the 10 then try 7000iu but not until you feel 100%.
    It usually takes 8 weeks of taking the same amount of Vitamin D to know what your level will end up being on any given amount.
    If you get any new symptoms or old ones get worse, come back and tell me. Usually means a deficit in a mineral which is usually magnesium.
    Muscles use a lot of Vitamin D!
    You can always come back and let me know how you are doing or ask for more advice!
    If you have any more questions, just ask!

    Answered by  IAW on
  •  JBone on

    You are a wealth of knowledge and I really appreciate your time and efforts.
    Could I buy the Spring Valley 5,000 iu D3 at Walmart and take 2 of those a day or isn’t that as effective as pharmacy grade?
    Also, I’d like to eventually find out why I became deficient. Maybe I always was and the symptoms finally caught up with me. I can’t figure out why my testosterone levels were low. I’m on trt thankfully. Maybe vitamin d deficiency caused this issue. I’ll probably never know.

    • This reply was modified 3 weeks, 6 days ago by  JBone.
    Answered by  JBone on
  •  IAW on

    The supplement industry is not regulated. Therefore any supplement should be purchased from a reputable company. Not sure what you mean by pharmacy grade? The Walmart brand is probably fine but further than that, I cannot comment. I try not to recommend brands but I use Biotec brand. When I first started taking Vitamin D and had 5 people to buy for, it was the most cost effective and later on it was the one recommended by the council. This is because it is free from dyes and fillers and is batch tested. (Again, I am sure others are just fine.)
    I was not specific enough. All of your symptoms including the low testosterone is coming from low levels of Vitamin D. There are studies that show this. So I always try and warn people that if they “correct” a problem with Vitamin D to be careful. In this instance for you, your testosterone levels will probably start to increase naturally. So make sure between that and what you are taking, that your levels don’t go too high or make sure someone tests them.
    As for the “why” your D levels are low. The VDC exists because no one in this world is getting enough to keep a human healthy. Even in India most of the population is deficient. Everyone works in doors, leisure times in the summer are spent lots of times indoors. In winter at most latitudes, you can’t even make any Vitamin D. So if most people are chronically “low”, they may be sent “over the edge” so to speak by an illness, surgery, accident or stress. So having said this, if you can now think of a “reason”, let me know what it is. (I’m just curious!)

    Answered by  IAW on
  •  JBone on

    I can’t think of a reason. I remember about a year ago I started seeing very small signs of a problem. I noticed a little bit of depression, fatigue, gained a couple lbs, lost a little strength in workouts, BP elevated a little.
    Then all of a sudden wham!
    Lost a bunch of strength like over night, BP skyrocketed, very tired and light headed, vision got worse, penis had no life to it, etc… this was so traumatic and I had no idea what happened.
    I imagine I was always low even though I get a lot of sun. Maybe like you said, “ I got sent over the edge” and then that’s when this became so bad in many ways. Every bad symptom I’ve read about seems to have struck.
    I don’t understand the erectile issues. Must have something to do with poor blood flow because of lack of vitamin D which may also relate to BP spikes somehow.
    I think I’m gonna continue the once weekly 50,000 D3 but also add another 5,000 daily D3.
    A friend of mine has a friend who just recovered from this. Don’t know any details yet but I guess he started Vitamin d supplements and gradually felt better to feeling great in about 6 months. That’s good to hear and also gives me hope.
    So, what about you? You obviously have had something happen. Sorry I don’t know more about you or this forum. I just joined by referral. Did you go through a very traumatic time? I hope not but if you did, what happened.
    Thanks

    Answered by  JBone on
  •  IAW on

    I have literally read everything that has been written by Dr. Cannell and the VDC. After you know how humans were meant to get Vitamin D from sunshine and just what it takes to get “enough” to keep you healthy, you wonder how any of us have made it this far.
    For me though the “straw that broke the camel’s back” was contracting Lyme. It took 10 years to be diagnosed. I first started going to alternative health care providers to try and figure out what was wrong because conventional doctor’s were not helping . The first provider I saw would have been when there just started being more and more talk about Vitamin D. Personal computers and the internet were just in their infancy. He checked my level and it was 11ng/ml. No one else had bothered to check my level. I believe at the time only the Mayo Clinic had something about Vitamin D on the internet. As the years went on each doctor, though, increased the amount I should take. Finally 10 years later, on my first visit to a new doctor, I described all of my symptoms and literally within 5 minutes he said I had Lyme. I said “No I had the tests.” He said something to the fact that he guessed no one ever told me that the blood tests for Lyme aren’t any good. He would treat me without relying on the blood tests. So I said test me again anyway because I do not have to pay for it. Sure enough I was positive!
    So several years later I sent my husband to the same doctor I was seeing. He came home with a “fact sheet” about Vitamin D and where it comes from besides supplements. So I got back on the internet again to do more research and lo and behold found this website and Dr. John Cannell. After reading his website, I literally went back and read every “blog post” that he had done over, I believe, a three year period.
    Now that I know a whole lot more about what Vitamin D does, I started to wonder. Since D plays a big part in the immune system, I wonder if a lot less people would actually contract Lyme if we all had higher levels. I wonder if a lot of Lyme symptoms are actually caused be low Vitamin D and not the actually Lyme. I wonder if I had taken huge amounts of D could I have cured the Lyme without anything else. (Not really saying I am cured at this point.)
    You may or may not know that the biggest discovery is that Vitamin D helps turn “genes on and off”. Which in layman’s turns means “helps genes function properly”. So we can now no longer blame everything on our “genetic make-up” because genes cannot function properly without Vitamin D.
    So here is the last fact you may want to know. At levels below 40ng/ml your chances for cancer and autoimmune disease rises dramatically. By dramatically, for some cancers, 60%. So if you have “loved ones” you may want to try and convince them to take their 5000iu a day. Just warning you though, it’s not easy.
    Come back and let me know how you are doing!!!

    Answered by  IAW on
  •  JBone on

    Hi there.
    Things are weird. My BP has dropped dramatically. It’s where it used to be before this 9 month period.
    I’m not as depressed either.
    However, I feel really weak and light headed. Vision is blurry. Even more fatigued than before treatment. It’s been 3 weeks of D3 at 50,000/week.
    I’ve read that you can get worse before you recover from vitamin D deficiency. Something about cells recovering and your body being in an imbalance.
    Any knowledge or advice on this? Sound normal? Magnesium?
    Thanks.

    Answered by  JBone on
  •  IAW on

    Vitamin D should only make you feel better. I would get the magnesium and try that to start and see if those symptoms go away. Vitamin d uses a lot of magnesium. DO NOT get magnesium oxide.
    If that doesn’t change things in a week or two, then come back and tell me.
    If you take too much magnesium the worse that can happen is loose bowels and then you have to cut back on how much you take. So the guess is 250-500mg.

    Answered by  IAW on
  •  JBone on

    Thanks. Got some 100 mg magnesium citrate. I’ll probably start with 300 mg. I imagine this is daily right, or just when taking the weekly D3 pill? Also, when and if I get on a daily maintenance dose, do you think magnesium will still be required?
    thanks again.

    Answered by  JBone on
  •  IAW on

    I honestly do not know if you will still need the “extra” magnesium later on. Sometimes I wonder if Vitamin D can cause a “temporary” shortage when you start taking it. Only way to find out is once you are all better than stop using it and see what happens.

    Answered by  IAW on
  •  JBone on

    I cant imagine me feeling this bad is just from Vitamin D Deficiency. I’m almost thinking of asking dr to look at the possiblilty of Multiple Schlerosis.
    I don’t know how bad the effects of vitamin d deficiency can be but I cant imagine feeling this bad from that.

    Answered by  JBone on
  •  IAW on

    When you originally started this posting, you listed a “bunch” of symptoms and trailed off with an “etc….”. So you did not list everything which is fine. Now it appears some symptoms have gotten better but you said “I feel really weak and light headed and vision is blurry.” You said I am “Even more fatigued than before treatment.” (So we decided you should get some magnesium and see if that helps.)
    Sometimes Vitamin D can cause hypercalcemia. The symptoms of hypercalcemia include: feeling sick or being sick, poor appetite or loss of appetite, feeling very thirsty, passing urine often, constipation or diarrhea, abdominal pain, muscle weakness or pain, feeling confused, feeling tired and bone pain. I do not think you have this. Vitamin D can cause any mineral to go low but usually it is magnesium rather than calcium or potassium and the last two usually cause some kind of “pins and needles” or “numbness and tingling”.
    There are a total of 129 news or blog posts that have to do with Vitamin D deficiency and multiple sclerosis at https://www.vitamindcouncil.org/?s=multiple+sclerosis&submit=Submit. Multiple Sclerosis is autoimmune and there are many more autoimmune diseases. So you could have very well started one of these autoimmune conditions from a lack of Vitamin D but the answer to any of them is probably high amounts of Vitamin D.

    Answered by  IAW on
  •  JBone on

    Thank you so much for all your time and knowledge. That in itself makes me feel better.
    I have Dr appointment on November 2. We are going to discuss next steps if I’m not better. That’ll be almost 2 months into supplentstion. I’m hoping that I will be able to cancel that appointment because by then I should know if I’m recovering or not.
    Thanks agaIn and have a great weekend.

    Answered by  JBone on
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  •  JBone on

    I’m 5 weeks into recovery. Been taking 50k D3 every 6 days.
    Don’t want to jinx it but I think i’m getting better. Along way to go but better than going the other way as that is how it was feeling for a couple weeks. I was feeling really bad. The magnesium didn’t seem to help. In fact it may have risen BP. Who knows cuz theres probably many things going on in thousands of cells as my body and mind is hopfully recovering. I cannot wait.
    People have said that the recovery can be a rollercoaster with feeling better then worse and back and forth. Seems to have applied to me.
    Any way just wanted to check in and see if anyone had any thoughts or experiences .

    Answered by  JBone on

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