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Thanks so much for the update. I saved your information on your last post for future reference. I can't tolerate any form of vitamin D or calcium without hypercalcemia symptoms. It was interesting that your PTH was normal. Many doctors would have discounted the possibility of parathyroid issues with that result. I have high normal D3 (25 OH D) and I get zero sun and don't supplement. I'm going to get vitamin D 1.25 and PTH checked if I can. Doctors here have been useless..if my PTH is normal and my D3 is high normal am I likely to have parathyroid issues - my calcium is normal (high end of normal range)? Was your calcium elevated before diagnosis?I thought I would come update I am almost a year and half post op from have two enlarged parathyriods removed. I couldn't do any vit d for the first 14months I could only get it from the sun. Guessing the body can regulate it that way. First 8 months tanning would make me so tired and fatigue. After that I didn't get tired anymore. It was only the last two months I have been able to tolerate 2500iu of vit d and not have symptoms like I use to. I think the reason it took me so long to finally tolerate vit d was because my bones were taking up more magnesium than I could ingest or absorb. Also know as hungry bone syndrome. I had to gradual work up my magnesium too because too much would crash my adrenals. I am taking 650mgs a day now.
I'm hoping that to be the case and contributing to chronic GI dysfunction which I hope to make inroads on with a megadose injection of cholecilceferol even though I haven't tested positive for any known autoimmune condition yet;My endocrinologist tells me that people with autoimmune disease often have VDR receptor problems and so they don't uptake vitamin D normally. So those with autoimmune disease need to maintain higher serum levels of D3 - so that there's enough around for faulty receptor to work with (or words to that effect).
My doctor agreed to take blood and send to a private lab she knows of, but I had to pay for it, unlike my usual blood tests which are free and sent to public hospital labHow do you get the 1,25 D test? I can't find a doctor that will order it for me
It seems that low 25D + high 1.25D is what we get when we have not enough calcium intake!
https://www.vitamindcouncil.org/activated-vitamin-d-vs-25ohd-levels-what-should-you-measure/
Thanks for this article @pattismith It's good to see it because that's something I've been doing (i.e. calcium supplementation) the last couple of weeks just by chance because I read something on another forum, and it's definitely helping. I'm taking a tablet which has 1000mg calcium with 600iu vitamin D (started on half those doses for first week). It's the first time I've been able to tolerate even this small amount of vitamin D. I intend to increase the D3. Fingers crossed...I am in the pack with low/normal calcitriol and no clinical effect with vitamine D supplementation.
The question would be : does provitamine D supplementation has any effect on Calcitriol level for this pack!
Also what I have found by digging on vitD metabolism:
Have you tried B2 at bedtime?massive sleep issues
I will never supplement vitamin D again, I had huge problems, after taking megadoses for 20 days..Reviving this thread after 2.5 years. I have been having trouble with vitamin d since taking lithium orotate in 2013. Before that I had no problems with it.
Now my calcium and magnesium get out of balance very easily and take months/years to regulate.
I accidentally took in a fair amount of dietary vitamin d last fall and have been having massive sleep issues relating to the balance of magnesium and calcium. I seem to over-absorb both (which would be consistent with high 1,25 D but I haven't had the test) and have to spell them off each other in order to be able to sleep. This should get easier when the vitamin d is lower again and I am not over-absorbing either calcium or magnesium but it is a rough go in the meantime and I don't know how much longer it will take for excess vitamin d to wear off. All based on symptoms, but I have been observing the effects for years and managing the symptoms mostly well until the last few months.
Interested to hear from others about their vitamin d experiences. I've never heard of anyone having a problem like mine but I would certainly like to know what others have been through. Thanks!
@L'engle, The first order of business is to find out if your 1,25-dihydroxyvitamin D3 (aka calcitriol) is actually high or not. I'm not sure how it works in Canada but you may be able to use a direct-to-consumer laboratory testing service.
I've ordered that test in the US from a couple of different such companies (for example Direct Labs). They provide you with a requisition order which you then take to a blood draw facility (like LabCorp or Quest Diagnostics, for example). No doctor visit is needed as an online doctor signs off on the test order for you.