Vitamin D, ineffective brands and response

Posted , 4 users are following.

I've been fighting a Vit D deficency for a year. Wasted some time trying to find out why, but recently I was feeling like I was making some progress. After 4 wks of 10000IU D3 a day, the depression, anxiety, sleep issues, horrible fatigue, brain fog, and over powering food cravings backed off for a few days, I was able to exercise a little (a year ago I was a national level cyclist, lately struggled to walk).

Then last week I accidently threw away my 5000 IU D3 + K2 tablets which I'd been taking 2 of. I ordered some more, but and this week while waiting for them to arrive I took some 1000 IU D3 tabs (5-10 of these), plus K2 seperately. However I started to go backwards after just a day or 2! The symptoms came back, so tired again and miserable and massive cravings for carbs/caffeine. Brain fog, eyes wanted to close in middle of day.

Thursday night I got my replacement tabs and took 2 which seemed to help almost straight away. But a couple of days later, whilst better than I was mid week, I'm still feeling ropey, fatigued and a bit down.

I guess the question is, is it normal to be so responsive to the supplement on recovery? Should I have felt rough so rapidly? and have other people seen issues between brands of D3 - i.e. one seems very effective, the other (although reputable) completely ineffective?

Hello to everyone battling a deficiency by the way, can be pretty lonely as people around you don't really get it x  

0 likes, 8 replies

8 Replies

  • Posted

    Don't worry - there are plenty of people on this forum who know just what it's like to struggle through the symptoms of vit D deficiency with little understanding from the medical profession about just how debilitating this is - or how long it takes to resolve.

    Like you, it took over a year for me to approach normal. I have had many periods of very unpredictable energy levels from day to day, and unfortunately I can tell I have now fallen back into deficiency by the overwhelming fatigue and brain fog that has once more descended (slept fourteen and a half hours yesterday). 

    I would personally doubt that day to day fluctuations in vit D supplements would influence how you feel that much, as the processes that vit D deficiency disrupt - most notably bone mass maintenance - are not going to be altered much from one day to the next. The descent into osteomalacia (soft bone growth plates/adult rickets) and accompanying wasting of the gluteal and other muscles, takes time - as does their reversal and correction. I would cautiously suggest that the day to day fluctuations are likely to be caused by a very stressed body trying to put all its resources into trucking on but frequently running down.

    I would also caution against using a blood D level as a guide to how you 'should' be feeling as your blood levels will normalise well before your bones, calcium metabolism and muscles have recovered.

    Being a cyclist can certainly be a blessing with this condition: I find walking very painful, exhausting and as my balance is dodgy I trip over - but biking doesn't put pressure on my joints or hurt my feet. It's easier to cycle everywhere than to walk to the nearest bus stop!  Having said that, I am going to be watching the Tour on TV this afternoon, from the safety of my sofa. 

    All best wishes,

    :-)

    • Posted

      Janelle have you been diagnosed with anything else besides the Vit D deficiency? I also have Hypothyroidism & fibromyalgia. My rheumatologist states she can't get the vitamin D under control. She gave me Repletsta, a chewable wafer 50000 unit 2x a week. I only see her very 3-4 months. One thing that has helped symptoms for me was removing gluten from my diet. The doctor told me she has other patients that have also done same. Also corn (causes swelling).... but still the vitamin D is low. I have a feeling the problem is my body not able to absorb vitamins.

    • Posted

      Yes, Hashimoto's thyroiditis. I was written off with a fibro diagnosis before a new doctor eventually discovered the D/osteomalacia problem. I am not sure to what extent the fibro symptoms are just symptoms of D deficiency or form part of a separate etiology.

      There is growing evidence that some people have a genetic problem with D metabolism, and that this tends to be associated with other autoimmune disorders and inflammatory conditions. So it may not be that you can't absorb vitamins, but that you cannot utilise vitamin D (which remember is a hormone, not a vitamin) at the cellular receptor level as effectively as other people.   

      I have to say, I didn't notice any significant improvements with removing gluten but did with cutting down on sugar - which makes sense as sugar aggravates inflammatory conditions. 

      All best wishes, 

      :-)

  • Posted

    This conversation is really interesting! I have been deficient.. well.. all of my tests that have been done. Megadoses give me a boost, then I fall again. I also have immune problems, hashimotos hypothyroidism, swellingand, fibromyalgia, and possible celiac's. Lately I've also been up and down with anemia. It's interesting how so many people have very similar groupings.

    I've recently become allergic to the Vit d pills and oral suspension. I'm trying patches next.

    I'm going to go look up the gluteal muscle issue. I have a bunch of muscle weakness and pain. I wonder if it's related...

    Thanks for mentioning it. Hope you find the solution you need.

    Jen

    • Posted

      Weakness in the proximal muscles (thighs, glutes, shoulders, upper arms) is an absolute red flag for osteomalacia, Jen. Typical signs are difficulty rising from a squatting postion or climbing stairs. Although any of your autoimmune issues could be contributing to joint pain and weakness, vitamin D deficiency severe enough to cause osteomalacia will also give you bone pain and weakness in those large muscle groups. No wonder the fatigue can be overwhelming, eh? 
    • Posted

      Wow. That is exactly where I experience pain and weakness, first in lower back, then thighs, then arms. I'm ok, then I reach a tipping point and I have trouble walking, stairs, rising, walking upright. Sometimes my lower back just gets like jelly and it feels like my pelvis and back are holding each other up. Instead of the muscles. Recently I started having the same problem on the muscle that goes down my neck on the right. I need to check that out. Is there anything that can be done? I actually had to stop horseback riding because first my legs would go numb and just flop around, and then my arms started not being able to hold the reins up. Then I started not being able to carry the saddle all the way over and lift it up high enough to get it on. I hope it's fixable. Where do you go to get it diagnosed?

    • Posted

      If you have the symptoms of osteomalacia AND a vitamin D deficiency, you are supposed to receive a positive diagnosis on that basis. Although you CAN have a bone scan, such as DEXA, to confirm reduced bone density, in effect these scans cannot differentiate between osteomalacia and osteoporosis and doctors do not seem to be ordering them.

      I had to look up the clinical symptoms of D deficiency and directly ask my doctor "Look, do I have osteomalacia?" He nodded sagely, and answered 'Osteomalacia. Yes' (Wish you'd told me that in the first place, Doc). The 'cure' involves raising your  levels of vitamin D for long enough to get your bone-building/bone-destruction system back into bone-building mode to get your bones to reharden and then into the usual balance between creation and destruction - and all the other biochemistry that goes along with it, affecting your muscles, mood, immune system, etc.  

      Vitamin D deficiency/osteomalacia is no joke. It is really debilitating and far from the three months you get quoted by your GP, can take over a year to recover from. That's from Professor Michael Holick - and personally, I'll take his expert opinion after a career studying vitamin D over my GP who simply seemed not to know about the real time needed for recovery. 

      Since you are having such a hard time with the vitamin D supplements, you might need a long holiday in the sun!

    • Posted

      They suspect celiac's also, so Vit d is really a problem. I think I need to see about getting injections. I got rfa (radio frequency ablation) a month ago for the pain in my back. It helped, but I am still having problems. I need 800mg ibuprofen n 100mg trazadone every night to sleep. Even then, sometimes it's too bad to sleep. Argh. It's always something.

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