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recovery after vitamin D deficiency User Group
New member, long-time sufferer
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Feel free to tell your story,Let's hear your experience.

Founded by bisan on February 15, 2010
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New member, long-time sufferer

Hello all!

I guess this isn't a question as much as it is a thank you to those in here whose posts I've been reading that have given me hope and reassurance. And I guess a chance to vent a little to someone I know will "get it".. I don't tell anyone I know about what it's like to have a vitamin D deficiency because I know they can't understand and would think me a little crazy. I probably don't have to tell you how extremely frustrating and infuriating it is..

I was diagnosed a little over 3 months ago, and was put on 100k IU once a week. In retrospect I think I was lucky to have found a doctor who knew a bit about this deficiency. He had started including the vitamin D test in his standard suite of blood tests, as he'd had a few patients before me with the deficiency as well as reading up on it. Although he didn't suspect it from my description of the symptoms, he immediately noticed the low level of 10 ng/mL and wrote me a prescription for 100k IU of D3 for 6 weeks and a combined 880IU/1g calcium daily maintenance tablet.

I have had or still have pretty much every symptom I've read about in here. I guess you're familiar with the list by now: Bone/muscle/joint pain, dizziness, headaches, blurry vision, extreme fatigue and some others I probably forgot. The worst part for me is the heavy fog that slowly took over my brain along with the dizziness and headaches. I'm a very intellectual person; reading, learning and thinking to be intellectually stimulated is very important to me. My job is 90% thinking, and I've not been able to do it properly in about half a year. Losing this mental clarity made me absolutely miserable.

Now, more than 3 months after I started supplementing, I feel so much better. When I was down I found much comfort in reading from people who've recovered from their deficiency or was well on their way, so if you're reading this right now with the vitamin D stealing troll sucking the life out of you, know that you will get better with time.

I had my levels checked again 2 months after starting the supplementation, and was surprised to see that it was a whopping 75 ng/mL. This didn't at all correspond to how I felt, so there's not necessarily any strong correlation between how fast you get your levels up and how fast you'll get better. I've become better since then, but I'm still not the old me. It's very difficult to come to terms with the fact that's it's still going to take a long time before I'm completely back to normal, and thinking about how much of my life has gone to waste because of this infuriates me. Ever since I started feeling bad (around a year now), I've been stuck in this purgatory where I couldn't advance, couldn't enjoy the things I love, couldn't do my job properly and couldn't deal with the number of things that I should have been dealing with.

But I see light at the end of the tunnel now. This last week I've had windows of lucidity and it's absolute heaven. Being able to think about something other than this deficiency which has been on my mind every second of every day for at least half a year now. Yesterday I enjoyed the smell after it rains for the first time in months. I'm starting to get my creativity, energy and ambition back. And I love that.

That turned out much longer than I though, so if you've read this far then you know at least your reading abilities aren't affected by this deficiency :)
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5 Comments
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Avatar_f_tn
Thanks so much for the post!! Boy, do I sympathize! Technically, I guess I empathize heh :)
I must note that yours is the most aggressive treatment I've read about. Mine was pretty close at just over 70k/week. I took it as 10k/day.
I agree, completely, that the raised numbers alone so not mean one feels better. Time is definitely a factor, and I can tell you that I didn't feel any consistent improvement until well into my 5th month.
One thing I would suggest is that you take a minimum of 300(mg?) magnesium and a good multivitamin with your D and calcium. D needs magnesium to function in the body :)
75 is a great level! You may want to lower your dose but I suggest doing so slowly AND get retested every 3-6 months. Also, keep in mind that your body is still healing. It sounds like you are well on your way :) congrats!!!!! It is wonderful to get yourself back :)
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Avatar_f_tn
I envy you your quick recovery. Unable to tolerate megadoses, it took me 6+ months to get up to a D level of 40. You're right that it's easy to be dismissed as "crazy." I think that if you can maintain such high levels -- 75 is my dream -- your body will continue to heal itself and your recovery will continue. Good luck -- here's to your feeling better and better!!!
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Avatar_f_tn
Thanks! I'm having a good day today so I'm very positive about my recovery right now :) I find that I have to restrain myself from being too active, or I'll have to suffer my body's revenge tomorrow..

I did take magnesium before, but I stopped because I thought it made me feel worse. I'm not sure if it was really the magnesium or just my normal reaction to the vitamin D. Right now I take some cod liver oil and calcium with d & k tablets that contain 600IU of D combined. I also take a B-50 complex and some omega 3, which I would take anyway..

I don't take the 100k ones any more, that was just for 6 weeks. I think maybe my doctor would've prescribed a different dosage like 50k twice a week if he could, but the only option where I live is the 100k ones. I'm not sure what's more efficient, taking 100k all at once or spreading it out over the entire week, but I do think my levels rose quite fast compared to some others I've read from. So it worked well, BUT there are definitely side effects. After taking the big ones I would always feel much worse for a few days, and the first couple of weeks all I could do was eat, sleep and suffer. I had this very strange headache that didn't go away for 3 weeks or so where it felt like my brain was being cooked or electrocuted, like it was overheating.. It was quite horrible, but I'd go through it again if necessary.

Right now I don't take a fixed amount of vitamin D every day except for the 600IU from the calcium and cod liver oil tablets. I figure my levels are high enough by now and I only take the D when the symptoms reappear, which they do if I go a few days with only the 600IU. I have 5000 and 2400 IU tablets and a liquid solution with ~250 in each drop, which lets me be more precise and only take as much as I need to hold the symptoms back. There seems to be a point between the side effects of too much and the symptoms of too little where everything is in balance and I feel well, but it's difficult to get there and it doesn't last for very long. I do think the amount I require to hold back the symptoms is getting smaller though. I used to take at least 5k every day, but now it's more like 2000. All in all I've taken more than 1 million IUs since I was diagnosed. I don't want to be seen as recommending that people take huge doses of vitamin D because firstly I'm not in any position to make such a recommendation and secondly I know there can be very uncomfortable side effects.

I don't know what the site policy is on stuff like this, but I'd just like to mention that if any of you live in Europe and are having a hard time finding vitamin D in the shops and pharmacies like I did, there's an online shop called BigVits (should come up first if you google it) that has them. This isn't an endorsement or anything, just an FYI.
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Avatar_f_tn
Thank you! I guess I've been lucky on at least two points: The first doctor I saw put me on the megadose right away, and my body has responded well (as in, the levels rose fast.. side effects are another matter) to the supplementation. I'm sure being a relatively fit young male didn't count against me on the last point. Being a little careless, as young males often are, probably also counted in my favor in the long term: I forced in me the megadoses, damned be the side effects, because I wanted to get better so bad.

Keep in mind I'm nowhere near a full recovery yet. Even if I'm having a good day today, there will be horrible days in my future. And the levels in my blood don't at all correspond with how well I am.. Based on how I felt when I got the second test, my hope was that it maybe had reached 30, so seeing 75 was actually a bit of a disappointment and made me doubt I was going to get any better..

Yes, we will all get better. We just need to be patient, even if that's difficult.
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Avatar_f_tn
Being patient is reeeaaaalllly difficult sometimes. Given the type of healing our bodies are undergoing, I guess 6-12 months is reasonable. I'm just grateful to be out if the daily constant suffering stage! It will be interesting to see how everyone progresses. Keep us posted!
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