I’m hoping to find out if anyone here has any knowledge, experience or suggestions with a toxicity issue involving the taking of Calcitriol (Rocaltrol) and Vitamin D3 simultaneously. I posted my first thread here: healthunlocked.com/thyroidu... , and thought since this is another lengthy issue, connected though separate, it would be best to make a new thread. These threads got lengthy and my spaciness doesn’t help with me feeling sure they will be easily understood. I apologize for their length and hope I’ve been clear enough. If you read this, I sincerely appreciate your time!
Sooo…here’s what happened (due to neglect or flat out ignorance by my doctors) and what’s going on because of it…
PARATHYROID / CALCIUM / VIT.D ISSUES—THIS has become nightmarish and all due to more neglect or misguidance from doctors:
OK, here’s where some REAL “fun” begins. It will be difficult to be succinct yet thorough, so I apologize for that :-\
When my thyroid was removed (July 2015), my surgeon happily informed me he was able to save 3 of my 4 parathyroids. I was thrilled because the calcium issue was not one I needed added to all my other health problems. A day after surgery they went into severe shock and I had some serious hypocalcemic stuff going on. They released me a day sooner than I really should have been, considering how severe the problem was and it was very scary on the drive home with the severe symptoms happening. Anyway, post-surgery I was prescribed, by the hospital, to take Calcitriol .5, and Os-cal (500mg calcium/200iu D3), 6 tabs 3xday (9000mg). told to take 3,000 mg 3xday plus 1,000 if I felt symptoms inbetween. Surgery was on Mon, July 20th (17 months ago) I was sent home on Thursday afternoon and began recording the calcium/Calcitriol/magnesium intake throughout the day/night which I took as I needed it. I neglected to record the additional 500mg that was in my multi):
7/23 = 6500mg / 2600iu
7/24 = 11,000mg / 4400iu
7/25 = 11,000mg / 4400iu
7/26 = 7500mg / 3000iu
7/27 = 10,000mg / 4000iu
7/28 = 6500mg / 2600iu
7/29 = 3000mg / 1200iu
Then the endo (at that time) decreased me to 1 Os-cal and 1 Calcitriol daily, though I needed at least 2 Os-cal according to my symptoms, so within 8 days of surgery I was able to cut back to a normal calcium intake with my symptoms dramatically lessening by the 29th. You would think that this was an indication that my parathyroids were bouncing back, but I was told, every time blood was drawn and I saw the doctor, that they hadn’t and it was the doc’s “hope” that they would and that it wasn’t permanent. I had severe hypocalcemic symptoms once in Sept, 2 months post-surgery. At some point I was increased to taking Calcitriol TWICE a day for many months. About 7 months post-surgery, my functional medicine internist wanted me to increase my Vitamin D intake. I reminded her that I used to take 50,000iu twice a week for a couple of years and it was great. She said maybe 10,000iu daily. Anyway, I didn’t do it consistently, but around that time was when, in the middle of the night, I had severe hypocalcemic symptoms and kept dropping calcium pills to appease them. It took hours.
Meanwhile, my brain fog had worsened noticeably since surgery to the point where it started scaring me even more than it did pre-surgery/post-menopause when it worsened much more than my chronic brain fog (severe neurotoxicity) for the 40 years prior. No one had any explanation and just said it was the change in hormones or whatever. In April 2016 I had noticed that at night (1am-ish) when lying in bed I’d feel a bit of numbness in my toes. I asked my func. med. Doc if I should increase calcium. She said try it. So I did. So I upped it and was averaging a total of 2,000mg daily instead of 1500mg. Brain function continued to worsen, getting pretty severe.
Then 4 months later, in Aug. 2016, I came across an article that relates too much calcium to an increase in dementia in the elderly. I immediately saw my new endo on Aug 20th (ditched first one who screwed me up with the Tirosint and always seemed a bit ditzy and would say she told me things when she didn’t, etc.) about this possibly being related to the increased severity of my brain fog/memory loss. Her response, while reviewing my latest blood work, was to drop my Calcitriol to .5mg 1xday only, and my calcium back to 1000mg (no one ever took into account the 500mg in my multi, so I was really taking 1500mg). When I asked about reintroducing dairy (which I’m allergic to) to EAT calcium, she said yes (we all know calcium through food is better than supplements). I also asked if I should take small doses of Vit. D each time I ate calcium if it made me absorb it better. She said “yes.”
On Aug 25th —five days later—around 1am (there seems to be a “body clock” thing that happens) I had severe hypocalcemic symptoms (mouth/tongue/toes then full face/calves) and was popping 500mg Os-cals every 20-30 minutes (about 2500mg total) hoping the symptoms would subside. They didn’t and I passed out at 5am. I woke a few hours later and the symptoms were gone until about 11, an hour AFTER taking my morning Os-cal which didn’t make sense to me. Of course, this made me nervous because I was told it can affect the heart, I called the doc’s office before I went to the ER. The nurse said it was better to be safe, so I went. By the time I got to the hospital I was symptom-free, but I wanted the blood work done and an EKG anyway. My calcium blood levels were fine, everything else looked fine except my TSH being super low, but when the results came in a few days later, for the first time since my surgery, I saw PTH results (the docs had never explained my tests to me, they only said my parathyroids were still not functioning). I wish they measured the D.
AUG. 25th: after taking 2500 in the middle of the night, plus another 5 in the morning. The Calcium is high (I had no symptoms) and the PTH is low.
PTH CALCIUM MAGNESIUM PHOSPORUS
13 9.9 1.9 3.8
(15-65) (8.0-10.0) (1.8-2.4) (2.7-4.3)
No one was even considering that the Vit. D was a problem, including my doc, so I continued taking the extra doses of Vit. D (they were in “oil” pills instead of within a tablet or capsule as I’d always taken). Then a week later, there I was again at 1am with symptoms only this time I didn’t start downing a lot of Os-cal ‘cause I didn’t want to throw off blood work if I ended up in the ER again so I only took one extra. The symptoms never let up. I didn’t want to go back to the ER, but I wanted blood tests again, while this was all happening so I went back. Here are the results showing the calcium much lower and the PTH higher—my parathyroids were working! I was thrilled to know that, but very angry at all my doctors.
SEPT. 1st :
PTH CALCIUM MAGNESIUM PHOSPORUS
27 8.9 2.0 3.7
(15-65) (8.0-10.0) (1.8-2.4) (2.7-4.3)
This whole “we don’t know what’s wrong” thing wasn’t flying with me so I started doing all kinds of research to find SOME kind of clue as to what was happening. I was all over the internet. I was paying attention to every little symptom and when they were happening. I had begun reacting and getting symptoms often throughout the day or night and ALways after I took my supplements, whether it was immediate or an hour later.
Through all the research I learned (I think I knew, but forgot) that Calcitriol is a form of Vitamin D (like 2 steps down the conversion chain when it reaches the kidneys), I was reminded that D is fat-soluble, I was refreshed on the fact that you are NOT supposed to take Vitamin D when taking Calcitriol! Meanwhile THREE separate doctors said I could/should take Vitamin D: the first endo, my functional medicine doc and the second endo.
In the effort to help any doctor I was seeing be able to see my thyroid and calcium history more clearly and quickly so I would get PROPER treatment, I spent days making charts, having pulled out ALL records and tests I have in my possession. I came across a paper on which, right after surgery, I jotted down questions for my first endo. I had read all the hospital’s “take home” literature, all the info on the meds and supplements, etc. and on my list of questions one was: Calcitriol – conflicts: no vitamins, calcium or D? no magnesium unless on dialysis? Having been prescribed Os-cal and magnesium, I asked her about this. She said “Don’t worry about it. It’s nothing.” So I took her word for it, put it out of my mind and went back to taking all my supplements along with the Os-cal and additional magnesium.
SO—when the F.M. doc said to start taking 10,000 iu every day, I very occasionally took my 50,000iu capsules but only did this briefly. When I asked the second endo about taking D and she said yes, I didn’t remember anything about conflicts until these problems arose and I did all this research. NO one even THOUGHT of the fact, including in the ER, that taking D while taking Calcitriol could be a problem. My symptoms are all hypocalcemic though my blood showed I was getting “enough.” Everyone was stumped so, as we all know, we have to be our own doctors so it was I who determined, from how and when I was getting these symptoms, that it seemed to be the medication and I wanted to try stopping it. Also, every time I tried to be clear on the subject, having read many times that Calcitriol IS a form of Vitamin D, the second endo insisted it was NOT! She, still saying my parathyroids weren’t working, said if I wanted to stop the Calcitriol, I had to take a LOT of calcium to protect my bones, so she had me taking 4,000mg.
That, plus the dairy was killing me after a couple of days. The pain overall increased and my joints were weaker. As timing would have it, while my body was going through this insanity, we had a big project here in the house that involved a lot of lifting, twisting, etc. and I developed a hand/wrist problem that has limited my ability to do many normal things, including drawing and writing. That was the end of September. There was a dislocation of something in the wrist. That righted itself maybe a month ago so some movement improved, but the tendons are screwed up and I’m going to PT.
My sensitivity and reactions to so many supplements had gotten so that no matter what I took, including Osteo-biflex to help with the tendon problem. I have many bottles with only one pill or drop used because of this situation. I discussed with the doctors that I came to the conclusion that taking the extra D,first in the oil pill form, then the one time I took the 50,000iu and my body literally was on fire down to the nerves and skin, that doing that while taking Calcitriol became a toxic situation and I believe a lot of D is trapped in my fat. The endo sort of agreed it’s possible. Another said it’s not possible. Anyway, this is what I’ve come to believe. Through a LOT of trial and error of me trying many different forms of calcium, whether calcium alone, with and without D3, with and without magnesium, tablets, capsules, chewable. I tried D separately with oil drops. I react with hypocalcemic symptoms to all these things and more, in the beginning when this was at its “peak” I was having more obvious “allergic” reactions, too, like itching, etc.
I’m no longer taking Calcitriol, I take a calcium tablet which includes D3 and magnesium, plus I added the K2. I still react an hour later with hypocalcemic symptoms. Through all this I had packed on probably 20 lbs. in a couple of months and I think the additional fat is where it’s stored. I’m hoping that if I lose weight, it will help release what’s lodged. I started and it “seemed” to help, then I binged again and the symptoms kicked up. I’m now losing again and the symptoms happen often again. The fluctuation gives me hope that this is not permanent, still I fear so many things are, whether it’s this, the thyroid situation, all of it.
I can’t remember who asked about my supplements or tests with this, but the most recent doesn’t even show the calcium in the blood! We did a 24-hour urine, but I don’t have the results here (will get them), but I know a fair amount was being excreted. This is what did show though:
VIT.D-total VIT.D3 VIT. D2 MAGNESIUM PHOSPORUS
49 42 7 2.0 3.6
(30 - 100) (30 - 100) (30 - 100) (1.7-2.7) (2.5-5.0)
I also know that now, having looked back and read a hair analysis I poo-pooed back in 1988, everything it said showed seems to have actually come to fruition in the past 28 years since it was done. It showed the heavy metal toxicity, adrenal stress, the sluggish thyroid, that I could become osteopenic, allergic/sensitive, that calcium (and other things) wasn’t being absorbed properly and was lodging in my tissues (I think my brain, too). This was back in the beginning stages of me trying to figure out what was wrong with me. I REALLY wish I had taken this seriously because I KNOW my life would’ve turned out much differently as far as health, that’s for sure
SO, AFTER ALL THIS EXPLANATION, does anyone here have any suggestions/ knowledge/ experience, even guesses with this? Any help or ideas can be helpful because living like this is more than stressful. The symptoms are very uncomfortable, having my mouth, tongue and face going numb, and my toes and a few times my feet. I continue to worry that, even though my blood calcium shows it’s OK and that I’m also excreting a lot through urine, I feel like my bones may be suffering. I can’t tell. I do know that I am osteopenic, mild all over and somewhat accelerated in a few places.
Anyway, that’s the story, pretty much!
Thanks for any opinions or suggestions!