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Vitamin D deficiency success stories

Posted , 122 users are following.

LyLy
LyLy

I am in the midst of this deficiency trying to recover from the horrible symptoms that it can cause. I want to hear from people who have overcome this deficiency and how they did it. If there was adverse affects of long term use of vitamin d supplements.

How long did it take to make a full recovery and any hurdles you ran into along the way.

I am just in need of encouragement right now from this deficiency. It has stopped me in my tracks and life just stopped for me. Being frozen in time while everyone continues on with their life while I suffer and wrestle with the symptoms.

Dealing with doctors who are not knowledgeable with this deficiency can be very frustrating.

Please share your story so I know after the storm comes a rainbow. Your stories will bring encouragement and hope not only to me but for everyone out there searching for answers on vitamin d deficiency.

Thank you and God bless!

11 likes, 448 replies

448 Replies

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  • lottie_44623
    lottie_44623 LyLy

    Posted

    Hi everyone

    Ive just been put on 10.000 iu a day for my deficiency after seeing a new dr as the last one was wrong! 

    my question is odd but do any of you have problems with your tongue with vit D deficiency? my tongue feels much weaker at the back somehow and when I move it from side to side it feels heavy and sort of numb on one side?

    The tongue is a muscle so it makes sense that it could be effected but my dr was not concerned...but its making me feel like I cant speak properly.

    I do have migraines with aura though so it could be that but never had it before.

    just wondered thanks x 

    • sally28732
      sally28732 lottie_44623

      Posted

      Yes Lottie, I do with my tongue, I am hoping the same as you, that its because it is a muscle that it is affected in that way by low vit b. Sometimes it feels like its is burning, which can apparently be one of the odd signs of menopause (which I am having too) During my pregnancies I had really bad morning sickness (all day!) and had that odd taste on my tongue, so if its hormone related like that for me I can see the link. I am also wondering if I am more aware of my tongue and swallowing etc because I am taking more tablets than I usually would, and then worrying about it.

      I also have migraines from time to time, they dont usually affect my tongue though, its usually visual flashing lights.

      Are you also taking Magnesium and K2? These are supposed to help the vit d levels to increase.

       

    • filippo54861
      filippo54861 sally28732

      Posted

      I also think that vit D deficiency could lead to the symptoms in your tongue. But do you also feel nauseated and sometimes do you retch/dry heave? Because i feel nauseated most of the time and i don't know if It's normal. I started to take magnesium only this week after 7 of 50,000iu of vit D each and I'll start with k2 tomorrow

    • sally28732
      sally28732 filippo54861

      Posted

      Yes I am feeling a bit sick too, just think its affecting my whole body. I try taking tablets after food, so nothing on an empty stomach to try and help, as my tummy seems to rumble and bubble more than it used to. I sometimes heave when I take my magnesium as its a larger pill and it seems to stick to my tongue. I try not to think about it too much, as anxiety and worrying can cause other symptoms, as well as affect the way we perceive pain etc. I too have my k2 on order, hoping it comes tomorrow. I understand they are best taken about 8 hours after the vit b. But there are so many tips/suggestion on forums its difficult to know what evidence/truth there is behind some of it.
  • terr28862
    terr28862 LyLy

    Edited

    Hi Everyone! I'm so glad I found this discussion thread. I've been feeling pretty lost and alone with my symptoms and was relieved to find others out there who are suffering as I am. About a month ago, I went down pretty hard with extreme fatigue, heart palpitations, chest pain, chills, dizziness, foggy-headedness, trouble concentrating and with memory, and blurry vision. Looking back, I've had these symptoms off and on for a good 7-8 months. I had seen a cardiologist for these symptoms a few months earlier and had been through some tests including a Holter monitor with no results. I am very active at 43 with two kids, and I run and lift weights. About a week later, in addition to these symptoms, I started getting 'tremors,' muscle twitching, and numbness/heaviness in my right foot and hands. Sometimes I feel so out of it I feel like I'm drunk and it's hard to just get through the day! I had a stress test (clear) and went to a different internist because my original doctor thought I was a little crazy. I got tested for many things and it turns out I have low vitamin D, low ferritin, and high B6. I also was referred to a neurologist and after additional blood tests, an MRI, and EEG, all that turned out to be normal too. I have a history of GI issues after my gallbladder removal and have been on PPIs and H2 blockers long term. I am no longer on them as of a month ago. I also found out I am gluten intolerant and have not been eating gluten for three months. I suspect my GI issues have contributed to malabsorption and my symptoms. 

    I am now on 50,000 of D2 once a week for eight weeks and take 4,000 ius of D3 at my neurologist's recommendation. I am also taking carbonyl iron to try and get my ferritin up. I only started this regiment last week. From all my research on the internet, it looks like a slow road to recovery. I have good days and bad days, but knowing there are others out there with the same thing I don't feel so alone! (or crazy!)

    Does anyone think I should get tested for any other vitamin issues? My B12 and Magnesium are fine, though magnesium is on the lower end. I did not have my folate tested. 

    Those who are going through this, how long before you felt better? Did you symptoms get more mild as time went on?

    Thinking of everyone who is going through this challenge!

    • gail38077
      gail38077 terr28862

      Posted

      The minute I read this I had to weigh in. I am so thrilled to hear you are off the PPIs/proton pump inhibitors/protonics. They are very dangerous when used long-term. They were not meant for long-term use, but many doctors don't know this and prescribe them to people with digestive issues, particularly reflux. Problem is if you stay on them for any length of time, they eliminate/remove any stomach acid you had left, and then you don't have the stomach acid you need to absorb key vitamins and minerals that you need from food. You likely just learned this and that's why you came off this. It's a well-kept secret and many people with vitamin deficiency don't know that PPIs was at the root of their issue. I, like you, had issues with low ferritin (i needlessly went for about 60 - 70 IV iron treatments to treat severe iron-deficient anemia). Doctors couldn't figure out what the heck was wrong with me. I had radiation and surgeries in the intestinal area for cancer treatment, so they thought it was the cause, and it may have contributed, but when it got to the point that even the iron treatments weren't keeping my anemia under control and I needed blood transfusions, that was it for me. I went cold turkey off the PPIs and never looked back and within a month or two my iron levels went back to where they should have been and I haven't had a problem since. Others should weigh in, but I heard that you need the stomach acid to get what you need as far as vitamins and minerals go from food, in general, but in the case of D, you need to have enough fat in your diet to absorb it. Welcome others throughts on this.

    • gail38077
      gail38077

      Posted

      Oh one more thing. Many people who have reflux issues actually have reflux due to low stomach/not enough stomach acid vs. too much acid, so the PPIs just make things worse and worse. I take a teaspoon of apple cider vinegar mixed in a cup of warm water about 20 minutes before dinner (my biggest meal of the day. After just a few months of doing this ritual, I've seen SIGNIFICANT improvement with reflux. Sorry to get on the soapbox about all this stuff, but I just want to help others.

    • terr28862
      terr28862 gail38077

      Posted

      gail38077, I read about your malabsorption issues earlier in this thread! I actually thought that the PPI I was on was creating my symptoms, so I stopped that and went to an H2 blocker in the fall. Things didn't get better, only worse. My issues and symptoms are a combination of things I guess, including the Vitamin D deficiency. I was so desperate for GI relief that quit all GI meds, and I stopped eating gluten at a friend's recommendation because she has similar issues. Within a week and a half, it made a huge difference. I'm not going back smile

      I am having a hard time stomaching the iron and have been anemic off and on all year. My gastritis is due to excess bile (no gallbladder - it dumps into my gut) I've tried four different kinds including liquids, and I think I might have a winner with the carbonyl iron. I read that it's often prescribed to gastric bypass patients and is gentle and easy to absorb. My doctor recommended iron transfusions, but am very scared about side effects. I feel like death most days and can barely shower or get my kids off to school and I don't think I could deal with side effects on top of everything else! Did you have any problems with the IVs? I have also started eating liver a couple times a week - yech!

      I am on my second gastroenterologist and I had asked him about vitamin malabsorption issues and he said it shouldn't be a problem. And then all of this hit. He will get an earful from me the next time I see him!

      ?

  • gail38077
    gail38077 LyLy

    Posted

    When they first discovered I was anemic, my iron level was so low, my ferretin was like a two or something (symptoms included very rapid heart rate and tongue that was very swollen sore/felt burnt), i had to have an immediate transfusion. At a couple of other points I had to have them too. It is not good to have transfusions and they say you should afford them whenever possible, but one time I needed one related to surgery. I was nervous about having an allergic reaction, but I didn't. I also never had any allergic reactions to iron treatments, but I did not do the intense, high-dose versions. Message me if you are ever considering them and I will investigate the names of the treatments I had. I had two different types. I wish you the best of luck with all of this. It's all so complex and many doctors don't understand the intricacies of everything and how one thing causes another. I feel exhausted all the time too, sadly. I used to feel exhausted from the anemia, eventually felt way better as that improved, but for the last 8 months or so have been exhausted from the low D, which I wasn't aware was an issue -- that I had low D! 

    P.S. for other readers -- I think both H2 blockers and tums cause the same problems as PPIs since they reduce acid in your stomach. Not sure about H2, but I know tums causes the same problem.

  • Navario1
    Navario1 LyLy

    Posted

    Hi. I am 24 yeras old male.

    Two months ago i was diagnosed with 10 ng/ml of vitamin D after years of feeling pain and fatigue. My worst sympton was that I was sleepy all time and had unrested sleep. Now most of my symptons have gone after 7 weeks of 50000iu but even tought i feel my sleep is refreshing now. After two hours or three after waking up i feel sleepy again. 

    Will this improve? Did somebody feel like that? 

    Thanks in advance. 

    • filippo54861
      filippo54861 Navario1

      Posted

      I am also at the 7th week of vit D supplements and i still have various symptoms of the deficiency but, from what you can read in this thread, our body can take some months to completely heal (3-4 months?) so yeah it will likely improve. I also suggest you to take magnesium and vit k2 together with the vit D. Since vit D can drastically decrease these two factors. Magnesium can also help you have more relaxed and resting sleep.
    • sally28732
      sally28732 filippo54861

      Posted

      Magnesium glycinate is supposed to in particular. How much vit D are you taking if you don't mind me asking? 

    • filippo54861
      filippo54861 sally28732

      Posted

      50'000iu per week and I started taking magnesium and k2 only this week.

  • sarah31970
    sarah31970 LyLy

    Posted

    I, too, am interested in hearing success stories. My teenage daughter was diagnosed with vitamin d deficiency (19) as well as iron deficiency (don't know the level of that) in January, and has been taking supplements ever since. We were just told that her numbers were back up to where they should be (although the dr didn't tell us exactly what they were) but she is continuing to have pain. She is a dancer and has been suffering from what we thought was severe shin splints since last July, but the orthopedist (2nd ortho we have seen in the last 8-9 months) seems to think it is leg pain related to the deficiencies. So we are now wondering how long it will take for her pain to go away now that her levels are back up? I guess we thought the pain was occurring because of the low levels and are frustrated that even though the levels are up she is still having pain. Can anyone share their success story and let me know how long it took you to feel better after your levels went back up? Thank you. 

    • samantha42711
      samantha42711 sarah31970

      Posted

      Hi Sarah, I have also recently discovered I have a vitamin d deficiency and folate deficiency. I have felt very unwell and have had quite bad pain in my joints and muscles along with lots of other symptoms. My doctor has prescribed medication but I have yet to see an improvement.. 8 weeks later! I have recently joined a group on Facebook called 'Vitamin D Deficiency Uk ' and have found it very useful. Lots of people sharing information and also lots of guidance of getting your levels up to what they need to be to start feeling well again. Apparently my level is only slightly low at 45mnol (guidlines at 75 -250) but according to other members of the group it should be up at 125 to start noticing any difference. It maybe that she has reached the range they call normal when in fact it needs to be much higher. The group gives you lots of info on the supplements you should be taking to get to a safe level. I've found it useful already and im hoping to see an improvement myself fingers crossed. I hope your daughter gets well soon x

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