It's finally happened!!! I started taking vitamin d therapy in May and my levels finally hit 41 and I feel GREAT. As my levels rose, I felt better and better. Virtually all my symptoms have disappeared except for some residual nerve damage in my left leg (I have a very bad back - pinched nerve, damaged muscle, DDD). Of course, the endocrinologist was skeptical as to whether the improvement is due to D or coincident. Also my blood calcium level which was up to 10.4 at one point is now down to 9.3, right in that perfect middle range. I'm going to keep taking the same dose of D -- 4400 IUs daily (gel caps) and hope my levels go up even further. An added unexpected benefit is that I sleep beautifully. Phyllis
I'm so glad to hear this - I went into the symptoms-thread to see what you were struggling before. This sure gives me a lot of hope :) It's sooo nice to hear a success-story as well in here :)
Do you remeber how long you had been on D when you started feeling better? And which symptoms dissipated first? As I've only been on D3 for a couple of months, I'd find that interesting :) (I've never been on mega-doses, though, so it might take longer for me I suppose).
Once again - I'm soooo happy for you, Phyllis! And I bet your level will continue to go up :)
Great News!!! I know it has been a long haul. I know I started feeling better once my numbers got into the 40's (granted I am still on 50,000IU of the D2 weekly and 2,000IU D3 daily because my endocrinologist wants my numbers in the 60's) I have a level check the end of next week, so I will find out by the 17th if I am still improving. (at least number wise :P)
I don't think your improvement is just "coincidence". I think your Vitamin D therapy is the key.
9na in answer to your question I'm afraid I didn't start feeling noticeably better until my D levels hit the 30s in mid October, even then I had a "set back" when I upped my D3 dose to 4400 IUs.
Gadgets, you've been a great support to me during this ordeal fraught with physician skepticism. You've also answered another question -- I think I should get my levels even higher if I feel this good at 41 then the 60s seem a reasonable goal. Please let me know if your still improving. I was told at my endo appointment yesterday not to raise my dose but to keep on the same dose to see if I plateau or keep increasing...Other improvements include a calcium level that's dropped down to 9.3 from an uncomfortable 10.4, 9.9. I also must look better since several people including my PCP have asked if I've had something "done."...While I don't think vitamin D has necessarily cured all my problems, I agree that this is not a "coincidence."
Actually I'm prepared that it'll take a long time to feel better. What bothers me is that sometimes I feel worse than ever - and even have new symptoms, that presented themselves after I started D... But I'm still very very happy to hear about your excellent progress :)
9na, I had the exact same experience. In fact, every time I upped my D3 dose within 2 weeks I'd experience a worsening of existing symptoms (crippling back pain, problems walking, palpiatations, etc) that would then resolve and I'd feel stronger. It took a long time for me because I could not tolerate large megadoses...So, I guess what I'm saying is don't be discouraged and hang in there!!!!...Since vitamin D3 sells for less than $10.00, big pharma companies just don't have the financial incentives to do the studies we need to clarify all the issues such as differentiating D deficiency symptoms from those of other underlying illnesses, refining dosing and defining adverse effects/drug reactions.
Omgoodness this is great! Great news and congratulations, Phyllis and Gadgets!!! I'm so excited to hear your success stories, I can't tell you :)
While I have not lost ALL faith in doctors, I now take what they have to say with a block of salt and then do my own research, for sure! For too many years I and so many of the people here have been met with a range of skepticism to outright disbelief whennit came to addressing our issues. So much pain, so much energy, money and TIME spent on medical communities BS myopia when our bodies tell us very clearly what's going on ( everything but the diagnosis in specific lol )
Anyway, let your endocrinologist keep her head in the sand if she likes it so much and we will revel in your recovery!
Lord, I hope one day our doctors read this whole forum! Heheheheh
a little mean, that.
Thank you all for sharing your stories!
I get the same thing about how I look. I must have looked really bad when my levels were low. Everyone comments that I have color in my face and look so much healthier. I am even walking better. I still have some pain, but the endocrinologist thinks I have fibromyalgia on top of the VDD, since I have good and bad days. (More based on the weather.)
Gadgets, yeah it certainly made me realize how sick/bad I must have looked before and how many years this must have been going on. In terms of walking I no longer use the cane. Of course, like you, I have something else going on -- best case multiple back problems, worst case MS. But, I think that correcting D deficiency takes that out of the differential diagnostic picture. However, my migraines seem to be decreasing in frequency as my D levels go higher. Also, an added plus my nails are better.
Seattleanne, I vitamin that cost less than 10.00 a bottle addressed my issues!!!! I want to figure out within this forum (forget the docs and scientists) just how high to take my vitamin D level. What is the optimal level? 60? 80? If I feel much better at 41 should I try to double it? I'm sure none of my docs have any idea.
From everything I've learned, I'm aiming for 60. I started out at 9, and have been on 10k/ day d3 for almost 3 months. I suspect it will take me quite a while to get there ( I imagine another 6-8 months). One of the reasons I asked how and when people experienced improvement is because even though I know, intellectually, that it's too early to expect feeling better, I NEED to hear success stories again and again. I just get stuck in the discomfort of now, you see.
I get a retest this Wednesday so I'll have some idea of how my body is processing the d.
Gadgets: I have a theory that fibromyalgia is actually vdd. I've been diagnosed with it too. But I'm optimistic that it will resolve as my levels of d improve and are maintained in the healthy range.
I know what you mean -- I need and needed to hear success stories. fingers crossed for you retest, it really feels great when those tests come back and the levels go up however gradually. Good, 60 sounds like a reasonable goal -- I wonder if I'll get there if I stick with 4400 IUs a day. Let us know how it goes Wednesday...That's very interesting info about fibromyalgia I wonder if anyone is studying the vitamin D connection...Phyllis
I'll be posting results for sure :)
As to level, 60 seems great to me right now, and within the healthy & healthy benefits range. We might learn later that being 80 is better, or 100... Not really like you can get a good answer from docs lol!! Still, I figure we will all be keeping an eye on our levels every 6 -12 months for the rest of our lives and will figure out what works best for each of us. Dr. Holick the vitamin d guru says optimum levels start at 40 and 100 is typically found in lifeguards. Toxicity isn't found until 150-200. So...
If you've been making progress at 4400, then you will probably continue... But you may become more active and then find you need more. I would say, if you're feeling great and your next test shows increase, keep it up :) I take 10k/ day, so I'm maxed out...it will be interesting to see if and at what level you plateau.
You are correct -- it's up to those of us in this Forum to determine optimal levels. My experience certainly supports Dr Holick's theory that optimum level begin at 40 because that's when I really noticed a change for the better..That's good advice; I'll stay at 4400 IUs then if I plateau at 40 or even decrease I'll take the dosage up higher; if on the other hand my levels continue to rise I'll simply stay at 4400. I don't think any of us has to worry about going over 150!!!! I'm interested in hearing your results after 10k/day.
I'm at 38! In 3 months, taking 10k/day d3. Still in a lot if discomfort, but I think maybe it's because even though my numbers are almost 40 (astounding!) it's still been too short a time for my body to have mended. Anyway.. Yay!
Got my numbers 57ng/ml. I am almost to the goal my endocrinologist set for me. I see him next Friday. I am little nervous about transitioning over to just the daily D3, but seeing that you all are able to achieve high numbers with just the D3 gives me hope. I will let you all know what the Endocrinologist says.
I also may be having some kidney issues due to the long term high dose of vitamin D therapy. So keep an eye on this. I had no outward symptoms, but I am spilling 4x the normal protein which is an indicator of some kidney damage. Going to talk to endo about this, too. Have a pleasant weekend.
Seattleanne, that's great news!!! I hope that as your levels continue to rise your symptoms start resolving!!!! Wonderful!!!
Gadgetsmidnight, you are my role model, I can't wait to get to where you are. I understand your trepidation but the daily D3 does work and, if you're monitored, you can always step it up again if your levels start falling...Actually, my endo didn't want me to go up to 5400 IUs daily, particularly since I take protein powder, due to concerns about it causing kidney damage long term. He said 4000 is the maximum recommended safe daily long term dose...57 you're so lucky there!!!! I'm working this weekend, unpleasant...
anyone have constant internal tremor from vit d deficiency? I'm 26 y.o. female and I'm terrified because of this shakiness. I have muscles twitching all over for a year now. Dizziness,flashes in the corner of my eyes,a cracking sound in my joints and even in my nose! I'm diagnosed with hypocalcemia,but I never checked my vitamin d levels....also my eyeballs are moving fast left-right involuntarily...any ideas?
I did indeed have some of the symptoms you describe such as fasciculations however that particular symptoms was due to my back spine, the flashes due to migraine. I did have internal shakiness which was either due to D deficiency, high dose vitamin D or my thyroid that has cleared up completely with the maintenance of normal vitamin D levels. It can't hurt and can only help to get your D levels up to normal. Good luck!!!!
Just saw that you had some thyroid issued that was resolved with the Vit D maintained on a high level, is it right? I have got antibodies, I am sure it s linked to my VDD, even if my endo doesnt agree on that.. For the moment I dont need to take thyroid hormons, and I really hope that my thyroid destruction can be stopped naturally with my Vit D back to normal..
Thanks for any information, and good luck!
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