my Vitamin D trial

Information about how to manage or reduce the severity of BFS symptoms

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my Vitamin D trial

Postby johnny999 on April 8th, 2011, 1:09 am

after reading the couple of posts about vitamin D deficiency, I decided to take matters into my own hands -Took 15 x 1000IU capsules (5 an hour x 3)

My reason for doing so was because, immediately prior to developing the twitching/issues, for many months I had been spending most of my time indoors, downstairs, etc. - possible links to indoors could be mold ( here in the northwest ) or a vitamin D deficiency. I know that it's best to get your levels tested beforehand, but the doctor would most likely insist it's not necessary :D

Within 5 hours, my short-term memory seemed alot better , and twitches seemed to occur on a minute-by minute basis rather than second by second, but it of course is most likely a placebo effect...

Side effects - mild hypercalcaemia ? like mild intermittent toe aches for maybe 4 minutes total, nothing too serious. Read that hydration is important, and to limit milk at first since you have to adjust to increased calcium absorption.

Hope I make it through the night :twisted:
Last edited by johnny999 on April 8th, 2011, 11:33 pm, edited 1 time in total.
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Re: my Vitamin D trial

Postby johnny999 on April 8th, 2011, 11:31 pm

Well, i made it through and the slight bone pain thing hasn't happened since yesterday. I'm still experiencing some twitching but it seems a bit less frequent - Some other very weird symptoms I've had seem to have stopped after starting D (torso blushing/flushing upon medium stress) so I'll probably take 15,000 more IU by the end of the month (30,000 IU total for the month) to see if this helps more.

Another strange thing - I started sneezing alot about 6 hours after taking the bunch of D - and throughout today also - Didn't feel sick though.
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Re: my Vitamin D trial

Postby MarkyMark on April 20th, 2011, 12:50 am

Vitamin D deficiency does seem to play a role in BFS. But keep in mid, you dont want to overdo it because It can have toxic effects. That is why it is actually important to get tested for deficiency, because for all you know you might not be. Remember theres only so much your body can absorb, so it absorbs whatever it is in need of and prety much discards the rest. I am not saying what you are doing is wrong, but building up your vitamin d levels is a slow process. You couldn't restore a deficiency overnight by overloading on supplements, simply because of what I stated before. Your body is only capable of absorbing a certain amount. But best of luck
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Re: my Vitamin D trial

Postby johnny999 on April 21st, 2011, 12:19 am

You couldn't restore a deficiency overnight by overloading on supplements, simply because of what I stated before. Your body is only capable of absorbing a certain amount.


Yep, should go slowly... I'd like to get tested but don't want to pester the ol' doc anymore :D

10,000 iu daily was found to have little or no side effects in a study- so 3,000-5,000 should be a good daily medium ?

I did read somewhere that one treatment for rickets is a single 300,000 iu dose of vitamin D :shock: - that would seem kind of extreme :P



Symptom update - still have twitches, but they seem alot less noticeable - the frequency is pretty similar to before but they seem much 'softer' - i no longer feel them, and only see them.

I guess I should slow down because my calculations indicate I've had about 85,000 iu already since I started - from 5000 per day and a few booster doses of 15,000
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Re: my Vitamin D trial

Postby MarkyMark on April 25th, 2011, 5:40 pm

Yes 5000 ius daily is a good daily dose, that is how much my doctor recommended I take and try not to exceed. Rickets is a severe form of vitamin d deficiency, atleast thats one disorder on our long checklist we can rule out :D
I would say I'm at the same level as you as far as my symptom update. I also still twitch but just less often than before. I wish I no longer feel them, but it seems as if I no longer see them. My recommendation is just to stick to 5000 ius daily
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Re: my Vitamin D trial

Postby johnny999 on April 25th, 2011, 11:49 pm

5000 it is then., hopefully one of us will see a complete resolution after a few months.

one component i havent seen discussed on here is hypercalcaemia due to secondary hyperparathyroidism.

hypercalcaemia can cause twitching and many other things, imbalances, etc.


The secondary hyperparathyroidism is usually a compensation for low vit D levels, so the parathyroid starts pumping out hormones and jacks calcium leeching way up

Quote from wiki:
Bone and joint pain are common, as are limb deformities. The elevated PTH has also pleiotropic effects on blood, immune system and neurological system.


pleiotropic is not a good thing!


secondary HP can advance to tertiary if untreated for too long:

Tertiary hyperparathyroidism is a state of excessive secretion of parathyroid hormone (PTH) after a long period of secondary hyperparathyroidism and resulting hypercalcemia. It reflects development of autonomous (unregulated) parathyroid function following a period of persistent parathyroid stimulation.

The basis of treatment is still prevention in chronic renal failure, starting medication and dietary restrictions long before dialysis treatment is initiated. Cinacalcet has greatly reduced the number of patients who ultimately require surgery for secondary hyperparathyroidism; however, approximately 5% of patients do not respond to medical therapy.

When secondary hyperparathyroidism is no longer responsive to treatment by medication, it is called tertiary hyperparathyroidism. The treatment of choice is surgical removal of three and one half parathyroid glands.
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Re: my Vitamin D trial

Postby tiggida on April 26th, 2011, 3:01 pm

I am low in Vitamin D but don't have hypercalciemia (sp?) I don't have hypothyroidism yet ( I know hypo/hyper para is different) but anyway I don't have hypothyroidism yet (bloodwork shows everything good) but an MRI showed I had thyroiditis with a small, small cyst which doctor said just means that I will more than likely end up hypothyroid (my mom is and my dad was) but that it was probably unlikely that this was causing my twitching. Also told by two neuros that my cervical spine bulging disc and 3 bone spurs and a spinal cord defect were all too minimal to cause the twitching......huh, so what is????? LOL
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Re: my Vitamin D trial

Postby MarkyMark on April 27th, 2011, 12:47 am

I also don't have hypercalcimia so I wouldn't know. I know hypervitaminosis d can cause hypercalcimia, but that is in cases of extreme overdosing. Keep in mind, as you already know, most cal-mag supplements contain vitamin D, because its essential for better absorption. An overdose of vitamin d would require dosage somewhere in the range of 77,000 IUs per day, over a period of several weeks or months. I am nowhere near that. As far as hyperthyroidism, I do not possess much knowledge on that subject but I doubt it should be of any concern for me personally....Now lets not start playing the research game we played before that eventually lead us to realizing this condition. I know it always seems preferable to find a cause, hoping it would eventually point us to a cure. But if anything this will only exacerbate your anxiety and cause your symptoms to worsen. I was happy enough to find a semi-cause (vit.d deficiency). But if I don't see my symptoms subside completely, I'm not gonna run back to dr. google, because as of now I want to sue him for malpractice :D . And remember vitamin D deficiency takes a long time to restore. Best of luck, and hopefully we will all live to see the day where there will be effective treatment and maybe even a cure.
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