Calcitriol (Rocaltrol) + Vit. D3 = TOXICITY!

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! :D

:Donna

66 Replies

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  • I am woefully ignorant of parathyroid and calcium issues. When people mention parathyroids, I sometimes post a couple of links:

    parathyroid.com/ - USA-based and, at heart, a commercial site but with much information.

    hypopara.org.uk/home.php - a UK charity site.

    I don't want to go wading into your complicated issues without having enough understanding to be helpful. The last thing you need is misguided but well-meaning comments. So I am unlikely to add anything of value to you, I am afraid.

  • It is unusual to have hypoparathyroidism with 3 parathyroids remaining, have the doctors actually considered hyperparathyroidism ?

    Although I run a parathyroid forum I am loath to try and unravel your problems, sorry. I would suggest posting on the hypoparathyroid site.

  • @bantam12, the problem is that I think my parathyroids bounced back relatively quickly, but these ignorant doctors were only looking at my Vit. D levels which have been chronically low for years (which I told them, but they don't keep that key info at the forefront when they scan their computers!) and kept saying my parathyroids were the problem. My blood boils over this and what they've caused. And I don't remember if I'd come across a hypoparathyroid site that had forums?

  • The vitd issue is complex, many people seem to have low vitd which is normal for them, I had parathyroid surgery 3 years ago and now only have 1 left, my vitd level has always been below 30 and thats normal for me, if I try to raise it i feel very unwell, vitd supplements do not suit me at all.

    I had hypoparathyroidism after my surgery and was prescribed calcium along with vitd, after a week I felt dreadful so I stopped taking both. My remaining parathyroid slowly recovered over the following week.

    It may be that you are one of the many who have a problem with vitd and maybe your levels are being pushed higher than your body wants.

    Having all parathyroids damaged during surgery should not happen, maybe your surgeon wasn't experienced in neck surgery.

    You need to find out if your parathyroids are in fact dead or alive and then if needed revise your supplements, possibly with a more experienced doctor. Some of your symptoms are common with hyperparathyroidism, particularly the high calcium in urine, it is possible to be hyper with a normal calcium level so may be worth looking at that as well as hypo, an ultrasound and sestamibi scan could be useful.

    Good luck

  • Some info here:-

    netdoctor.co.uk/medicines/a...

    You should not take vitamin supplements that contain vitamin D or eat food that has been fortified with vitamin D while you are taking this medicine as this can result in your calcium level rising too high.

  • @PMRPete, I am off the meds because I insisted I didn't need them, but because they told me I could take the D (all 3 doctors!), the damage has been done. What's confusing/concerning is that the result is even though my tests are showing sufficient calcium, D, magnesium, etc., I am suffering with hypocalcemic symptoms every day no matter what I've been taking. They happen if I don't take the supps and then within an hour after I've taken them. It's driving me nuts AND frightening me.

  • Have you had your B12 tested ? deficiency in that can cause similar symptoms.

  • I am not experinaced enough to respond to this but I wnder if you could contact The vitamin d council and ask about this,

  • Thank you, @mandyjane :) I didn't know there was a Vit. D council!

  • I too am not educated enough in giving advice but only my daughters experience with vitamin d. She was taking 2000iu for about 18 months - a safe amount i was assured. Well she became ill a few months ago, she lost about a stone in weight without trying, was constantly nauseous, she had achy muscles, headaches, her urine was cloudy, terrible breathlessness, dizziness, her bones and muscles were unbearably achy. She also developed the highest fever she's ever had. We took her to the doctors and they did full blood count (inc thyroid which i disagree with their conclusion but that's another story) and her vitamin d levels were borderline high and her calcium was borderline high. She also developed a heart murmur which she has never had before. This was heard by three different doctors and had to have a echocardiogram. I am convinced that it was the vitamin d. I have done a lot of reading on vitamin d and there are a few people who don't feel so great on it and can have adverse reactions. Whilst I agree it is a great vitamin some people are extremely sensitive and react in different ways to its affects and I think my daughter is one of them. I've known other people who have developed palpitations and achy bones after taking it too. I think if people take vitamin d I think it needs to be monitored very closesly for side effects.

  • Please read these!

    Vitamin D supplements:

    Are yours helping or hurting you?

    precisionnutrition.com/stop...

    authoritynutrition.com/how-...

  • These are very general sources and do not seem applicable to Disney Muse's problem.

    Many of us have VDR gene mutations causing us to need higher dose of vitamin D. And other health problems can alter our Vitamin D levels. My vitamin D level just dropped from 80 to 55 taking 10,000 IUs daily. If I followed the well meaning but overgenralized advice in these articles, I could be in serious trouble.

    Low vitamin D levels correlate well with cancer incidence.

    The articles also didn't cover the need for trace minerals, like boron, strontium, or vanadium, in using vitamin D. Or the difference between types of magnesium.

  • @Learner1, I too need high doses of D, but right now can't take them and whatever's happened due to the D/Calcitriol conflict, I believe created this toxicity problem *sigh*

  • @Dottie2011, I'm so sorry to hear about your daughter with the D issues :( I actually have a couple of books on D here, and the endocrine system. I've yet to be able to really read them---just sections. Before my thyroidectomy and all this mistreatment nonsense with taking D while taking Calcitriol, taking large doses of D was benefitting me greatly. I now have bone pain, tendon problems and other issues because of what this conflict did to me. I keep hoping if I lose enough weight, if this toxic amount of D is lodged in my fat, perhaps it will gradually be released into my system and the symptoms will subside and things will rebalance. I simply don't know and no doctor (yet) has been able to answer these questions *sigh* Thank you for the links!

  • It wasn't me DisneyMuse, it was Booboo212 whose daughter had the problems with D. I don't even have a daughter lol! ;)

    Hope you get your health issues sorted though, don't sound nice. :( Have you tried just upping your dose of Magnesium?? If you were taking high levels of D and Calcium, you could have caused a Magnesium deficiency.....

    easy-immune-health.com/magn...

    drsircus.com/cardiology/cal...

    On the safe side (Nothing to lose...but a lot to gain possibly!), maybe you could make up some Magnesium oil, as this is a quick and effective way of restoring Magnesium levels and there is no danger of overdosing, but there is much more of a danger of being deficient in this ESSENTIAL mineral and maybe that is why you are experiencing these health problems after taking so much Calcium and D for so long.

    Also, Vitamin K2 AND Vitamin A are both very important, as others have mentioned and mentioned in the link I posted.

  • Thanks, Dottie2011:) You bring up a good point about the Magnesium. Blood tests seem to always show it in range, but low-to-mid. I probably need higher, but get differing info as to what's optimal as far as dosage. My life, all these issues and my ever-decreasing brain function make all of this very difficult, not just to assimilate, but to actually figure out to put into action. I'm hoping I can do it somehow, and more importantly---find a doctor who actually has a clue that also accepts Medicare. We'll see! I'm wondering if I should just up the Magnesium and see if it helps!

  • I seriously think you have absolutely nothing to lose by upping your Magnesium intake (Via the oil, or a well absorbed supplement) and potentially tonnes to gain!! So, I'd say go ahead! I'm not an expert on this by any means, but from what you've said and the symptoms you have described, it does sound like you could have a Mag deficiency and if it is that, by increasing your levels of Mag, you 'could' (Very quickly) start to feel better again!! :)

    Also, when you say you are tested for your Mag level, please bear the following in mind (If you don't already know this).

    From Carolyn Dean's (Who wrote 'The Magnesium Miracle') website:

    "I don’t necessarily think a person needs to have their magnesium levels tested before taking magnesium. It’s a very safe mineral that does not build up in the body. If you take “too much” magnesium, you will just get the laxative effect that eliminates the excess. However, if you are on a handful of drugs and ask your doctor if you can take magnesium, they may just say no. Or they will do a standard serum magnesium test, which usually turns up normal.

    Serum magnesium is a very inaccurate measurement of magnesium in the body. Magnesium in the blood stream, AKA serum magnesium, measures only 1% of the total body magnesium; the range is 1.8-3.6mg/dL. When serum magnesium drops, mechanisms in the body push the levels up by dragging magnesium out of the bones and muscles. This is done for a very important reason – the heart muscle requires a constant level of magnesium or it will go into spasm – AKA a heart attack!

    A somewhat better test is the Magnesium RBC. It may measure 40% of the body’s total magnesium. The range is 4.2-6.8mg/dL. But don’t be fooled into thinking that if your level is 4.2 you have enough magnesium. Someone recently wrote asking my source for the optimum range of magnesium being 6.0-6.5mg/dL. He asked if this tighter range come from research, or did I arrive at it empirically. He also said that his nutritional-metabolic doctors were unaware of using 6 as the floor instead of 4.Serum magnesium is a very inaccurate measurement of magnesium in the body. Magnesium in the blood stream, AKA serum magnesium, measures only 1% of the total body magnesium; the range is 1.8-3.6mg/dL. When serum magnesium drops, mechanisms in the body push the levels up by dragging magnesium out of the bones and muscles. This is done for a very important reason – the heart muscle requires a constant level of magnesium or it will go into spasm – AKA a heart attack!"

  • If you don't fancy risking the 'laxative effect' some supplements give, when taking large doses to quickly restore Mag levels, then consider making the 'oil' as I said, as this bypasses the intestine and therefore you can use the oil as much as you need without getting the laxative effect!

  • This is so helpful :D You reminded me that a long time ago I purchased liquid Magnesium. This is what I mean about my brain fog/lack of recall and being overwhelmed with my way-too-full-life-for-one-person that keeps me from doing many things consistently. I simple forget everything, including to look at the many lists and charts I make to help me NOT forget.

    I have the bottle in front of me. It's not oil, it's in water. It is:

    Allergy Research Group "Solution of Magnesium" (as Magnesium Chloride), 1/2-tsp. serving = 66.5mg. The label suggestion is 2-3 times daily, diluted in liquid.

    I'm taking some RIGHT NOW! :)

    And the laxative effect isn't a big concern. It reminds me of the bowel tolerance test for Vit. C. I would think similar thinking would apply to magnesium. This is that test:

    Dr. Wendy Wells, N.M.D. 14301 N. 87th St, Suite 207 Scottsdale, AZ 85260

    480-607-0299 drwendywells.com

    Vitamin C is one of the most important anti-oxidants that our bodies need. Symptoms of vitamin C deficiency include bleeding gums, easy bruising, fatigue, low immune system or frequent colds and flu, muscle aches and pains, dry skin and hair, and even mood changes.

    Some patients need 2 grams per day and some need 20 grams. When we take more than we can use, our body eliminates extra vitamin C into our bowels and we feel this as a “girgle” or a “movement” in the bowel. This test will determine how many grams your body needs per day. To determine your “bowel tolerance” amount, do the following test.

    BOWEL TOLERANCE TEST

    1. take 1 gram (1000mg) of buffered vitamin C per hour

    2. continue taking 1 gram per hour until you have a bowel “girgle”

    3. at this point, stop taking the vitamin C and count how many hours and grams

    4. to determine your personal vitamin C dosage, calculate as follows:

    a. Total grams Vitamin C x 0.75 = Your total daily dose

    i. Do not take this all at once!

    b. Divide your total daily dose so that you take no more than 2 grams at one time

    i. Total daily dose / 2 grams = # doses / day

    FOR EXAMPLE:

    I took 1 g per hour for 8 hours, when I felt the “girgle” in my bowel

    Calculation – 8 grams x 0.75 = 6 grams

    I need 6 grams of vitamin C per day total

    6 grams / 2 grams = 3 doses per day

    I need to take 2 grams of vitamin C, 3 times per day

  • Ok, so I think that dose you said you take, of Magnesium, is way too low to correct a deficiency!

    '"When Mg substitution is started, the minimum

    dose to be applied is 600 mg Mg per day.

    The therapy should proceed for more than one month..."

    Read more: easy-immune-health.com/magn...'

    MAGNESIUM: THE ULTIMATE GUIDE (DR. CAROLYN DEAN):

    fireitupwithcj.com/the-ulti...

    ;)

  • I had been taking 500mg daily till I was playing games with the different calcium tablets/capsules and now I'm taking one that has 133mg per tablet 4xday, so that's 520mg. I wonder if I should really up it. Thank you for the links :)

  • Dottie2011 I'm reading the info on the page under the video and a few things on the list are confusing me (I removed the other items from this list and only kept the ones I'm wondering about):

    There are some special cases that Dr. Carolyn Dean details in “The Magnesium Miracle”, when you may feel worse after taking magnesium:

    -- You've started taking iodine or thyroid medication or you have hyperthyroidisim.

    -- You're taking too much vitamin D

    -- You're taking too much calcium and it’s pushing out your magnesium

    I've been taking Armour since the 90s, have only recently developed problems when I take D and calcium. I'm not sure what to think if these things can make me feel WORSE taking more magnesium. How do you correct a deficiency then? :(

  • I really wish you could talk to Carolyn Dean herself and ask her these questions DisneyMuse, as I don't really know the answer. I would have thought though that Magnesium deficiency is very serious and so, restoring levels is of utmost importance. But, if it's going to make you feel a lot worse, maybe that is just temporary, until the Mag levels rise and everything sorts itself out?? :/

    Anyway, I found this, which you 'may' find helpful:

    stopthethyroidmadness.com/2...

  • I got the magnesium and am definitely going to try to up my levels to see what the deal is. It makes perfect sense to me as far as what I'm going through and I really appreciate you bringing it up!!!

  • You're welcome, hope it helps! :)

  • I agree...

    It sounds like you have some pathways stuck due to lack of cofactors.

    Kind of like making angel food cake, which calls for a dozen eggs. If you have only 4 eggs, you can either make a really small cake, or you'll make a really lousy cake.

    Ensuring your vitamin A, magnesium, boron, strontium and vanadium levels are adequate is important.

    Then, there's spillover into other processes... you may need more of other antioxidants, like vitamins C & E, alpha lipoic acid and glutathione. Likewise, you may need more folate, B12, B6 or B2.

    A Genova Diagnostics NutrEval test might be helpful in sorting out what you're short of. They have a sample test on their website.

  • Ah, I've actually done the NutrEval test, about 2 years ago through my func. med. doctor. I can't recall results, but whatever they were I know they were addressed according to what she said my issues were. That plus my stool test showed inflammation and a few other things, so I'm taking the B-complex she recommended, Glutagenics to help heal the intestines which seems to help with reactions (I've been bad with gluten more recently :( ). I'm definitely going to add more magnesium and see if that helps!

    Also, after catching up with all these amazing comments in both threads, I will be responding to your message :)

  • We've been doing the NutrEval annually for 8 years for 4 family members with health problems. It's a good test, correlates well with others, and has been invaluable in untangling some serious problems. Results change dramatically over time, so might be worthwhile to repeat it.

  • I agree, but finances are the problem (with everything). Medicare doesn't cover it :(

  • My mother has had MediCare cover it in WA, NV, and CA. The only thing they balked at was the heavy metal testing, which showed she had elevated lead and mercury...LOL.

    You might call Genova directly and see. I believe she did the PrePay and was off the hook for what MediCare didn't cover...

    She had it ordered by MDs and a ARNP.

  • I can't remember if I paid most or all of it, but Genova said it goes through a certain way that makes it ineligible. I called Medicare about it, too. I have to pay :-\ Maybe it's a NJ thing *sigh*

  • Has your functional doctor also recommended trying to see whether your gut health needs improving DisneyMuse?? Again, I'm not an expert, but all kinds of things like medications, antibiotics, stress, wrong diet etc., can cause an inbalance of gut bacteria and when that happens, you can get many symptoms such as bowel inflammation and general health conditions.

    badgut.org/information-cent...

    chriskresser.com/9-steps-to...

    guthealthproject.com/8-comm...

  • Yep :) I'd had a stool test prior to this doctor and both addressed the gut. I went for all kinds of lovely tests, too, to be sure everything was OK. Basically, I have leaky gut and I fluctuate with how much I'm controlling the diet. I go months being super strict, then I can end up on poor diet binges :( This problem is directly related to what happened with the D and Calcitriol, and then the tendonitis makes sense with the Magnesium deficiency. Today I purchased the type recommended on the site that's best for deficiencies :)

  • Only read first one excellent article

  • Booboo212, I responded to Dottie mistakenly so responding to you is below lol

  • It's important yk temme.er the Co factors with d3 you need k2 to simplictyically put .to move the calcium around the body and not sitting in organs abs arteries etc where it makes problems ... magnesium is essential to help it be absorbed sns stay within the cells where it is needed..

    I only have done knowledge of d3 so unable to content on the other issues

  • thank you, Sandria :) I got some better magnesium today and started the K2 a couple of weeks ago, only recently finding out about its importance!

  • Hypervitaminosis is no joke; it's torture. I hope your daughter is feeling better now.

  • I never heard that term before! Going to look it up. Glad you mentioned it.

  • Last October 2015 I had a my thyroid removed, before this I was not on any medication. I left hospital 2 days later. I was given Levo, Vit d and calcium tablets to take. A nurse arrived the week after to take my blood and the hospital received the results the next day. I then had a phone call from the hospital that day telling me to stop both the Vit d and calcium. They said that the calcium levels were much to high. I was taking 1500mg per day and I started to fall over and felt quite ill.

    My parathyroids were removed during the op and replanted into my shoulder and upper arm. Without close monitoring the bloods every week like they do here in France, how are you able to sort out your problems?

  • wow, @Bunnyjean, planted in your shoulder or arm---this wasn't even suggested. My parathyroids seem to be working fine. The problem has been with the D/Calcitriol conflict and it has created all these other problems :( Here in the U.S. things are different, for sure. I wish we could do blood weekly! That was why I went to the Emergency Room the second time---I wanted immediate blood tests taken.

    It's probably important to point out that I am disabled and on Medicare here. It actually covers a lot of my treatments and blood work, but there are restrictions with how often, though that may be with most/all private insurance companies too. I can't afford to see any health professionals not covered by insurance, nor can I do any treatments, etc. not covered. I'm broke and continue to go into debt (now on my mother's credit card, me having claimed bankruptcy twice already due to all of this) with the things I do anyway. I'm grateful I have Medicare, but it doesn't solve all problems. They say money can't buy health, but with things like this, it can.

  • I am not an expert by any means, but I have discovered recently that most physicians do not understand that it is essential to take Vitamin K2 along with Vitamin D - it protects from toxicity and helps with the calcium regulation. You can get a lot of information by searching for those online. Vitamin D becomes toxic at higher levels without K2, but can be taken in very large doses as long as you have sufficient K2 (M7 type) and is actually being used at mega-dose levels for treating auto-immune disorders and cancers.

  • @mcenerny, this is very helpful! NO doctor---ever---has mentioned K2. Perhaps that would've helped me not be in this situation, I don't know. I'm taking it now, only just recently (maybe 2 weeks, if that). It is:

    K2-M7 90mcg

    The directions on the bottle say once a day unless directed by a physician. The second week I decided to take it twice a day along with the calcium which I take twice a day. I have no doctor (yet) to tell me how much I should be taking, considering NONE of my doctors ever even mentioned K2 *sigh*

  • Here's a link to relevant information on the Vitamin D Council website:

    vitamindcouncil.org/?s=Hypo...

    I hope it helps. X

  • Thank you, @dolphin5 ! :D

  • mcenerny is right on the ball. I take 2000 Vit D per day but always with K2. I either eat fermented cheese with it or take a pill i.e. fermented Natto. These two should go together and be taken with the fattiest meal of the day.

  • @mcenerny, are you saying the D and K2 should be taken with high fat content? I haven't been doing that consciously.

  • Yes, Vitamin A, K2 and D need fat to be absorbed. I make it a point to take a couple of Tablespoons of coconut oil every day, and I have my supplements in bulk powder form so I can add all to a daily green smoothie for the Folate and other trace elements we all seem to need so badly.

  • where do you get your supps in bulk powder form?

  • Disney, just a quick note that sometimes D receptors are not available (due to possible sleuth infection) and inactive D builds up. fearlessparent.org/suppleme...

    Also, blood testing or serum tests for magnesium are not at all accurate. If you decide to buy other types than liquid, try to get magnesium that does not include stearate or steric acid.

  • Thank you SO much for this info, and I don't think there's an infection so much as there was the D/Calcitriol conflict. I think this is a D build up. I've suspected it simply because there was too much and there was the conflict that the pharmaceutical warned about, but the doctors COMPLETELY ignored and poo-pooed. I wonder if it creates an inavailability problem that caused the D to build up. Thanks for the link! I have SO much to read lol

  • Good luck with that. Did you have both calcetriol and calcediol both taken at the same time. I think it's the only way to be sure.

    These sleuth infections may be the cause of a lot of problems but more and more is coming to light.

    Another important aspect I've been learning about are enzymes. Proleolytic enzymes are needed to help the nutrients work as they help the pancreas with digestion. After you get your calcium straightened, you can move onto enzymes.

  • I take digestive enzymes 'cause I'm lacking and have gut issues that have developed, too. The past 5-10 years have seen all kinds of stuff worsening. I've had chronic problems developing since I was a teenager (I'm now 59). I know they tested for the different Ds with at least one of the recent tests. I'm not able to recall which is which. I would have to reread that info to refresh myself, which is one reason it's bad that someone with my increasing brain impairment shouldn't have to do this myself, but there's no one else---including doctors! *sigh*

    Before the thyroid removal and other things that increased problems the past few years, for maybe a year or two I was taking pharmaceutical grade D3 50,000iu twice a week. I had stopped when I ran out, then when I got more and started taking it again, the improvement in an overall feeling of well-being that it helped create was very obvious. I don't think there's an infection related to it, but I just don't know.

  • You're probably okay then, Disney. I had to take huge doses but went back to regular and also had dark tan, my levels stay very deficient but when I took all forms of D, I couldn't raise my level. I also developed a small bony growth on my gum. I don't remember if that supplement had K2 but the others did. Yes, K2 is important.

  • Yeah, I only recently learned about K2 and not through my doctors *sigh* And I just now was cutting my toenails and suddenly, just over this past month since the last time, a few are getting all weird, thick, gross. I can't help but wonder if this whole issue has hastened that 'cause it's happened too suddenly to be aging, I think. The bony growth on your gum is certainly not good :-\

  • Of course the doctor didn't tell me about that either "sigh". Awful, isn't it. A friend on this forum told me it is called a Torus. It hasn't grown any more.

    They started combining K2 with D3 when it came out that they are connected.

    You might have a fungus infection in your toe. It's very common. If you put two drops of apple cider vinegar on the nail bed where it is growing out twice a day this might cure it. They are stubborn though so it may take a couple of months.

  • No, it's not a fungal thing...it's more of a thickness/layer thing. Reminds me of my father's nails, but I'm too young for that. Makes me think it may be connected. I guess if I can get this calcium/D/magnesium issue cleared up, I'll find out! :)

  • Maybe it's what happened with my bony growth from taking vitamin D without K2. I guess it takes about two months for the toe nail to grow out so hopefully you will find out by then. Let us know when you find solutions. It's an interesting problem.

  • I'm hoping and praying this can all be rectified 'cause the stress is killing me, wondering what harm is being done, and the symptoms are somewhat ruining my life in new ways. Not fun. Thank you, Heloise :)

  • Yes

  • Ok I'll try and help you all here on the mechanism of Calcium, Vit D3, and the cofactors which are often missed if you get anything make it this NO SINGLE NUTRIENT WORKS ALONE, THEY HAVE COFACTORS.

    Here's why calcium and Vit D gets toxic in simple terms, the reason there's heart palpitation with calcium is there's not enough magnesium to go around, think of the heart pumping as a fist. Calcium is needed to let you make the fist, magnesium it's opposing partner allows you to open the hand.

    Vit D3, why does it get toxic, it also needs a cofactor its called vitamin A, vitamin A prevents this, also vitamin K2 is needed to usher the calcium into the bones instead of the brain and arteries IE atherosclerosis. Plus it mobilises the MGP out of the liver, using it properly.

    Ok, magnesium is great for over 300 biochemical reactions in the body alone, this nutrient is so overlooked and food fortified with calcium you get problems. Magnesium, needs B Vitamin Complex and boron to function properly, see more cofactors.

    So in broad terms for you all, your missing Vit A, 10,000iu a day if on a high dose of vitamin D3,

    Magnesium 750-1000mg a day (no heart arrhythmias, taurate is best for the cardiovascular system) magnesium is also needed for the Parathyroids to function.

    And last but one, you need K2 to mobilise MGP, and escort the calcium where it should go to. Vitamin K2 has been shown to reverse atherosclerosis (tufts university)

    Lastly you need adequate digestive enzymes, and stomach acid, IE hydrochloric acid, or HCL with pepsin as a supplement.

    Magnesium is also needed for proper thyroid and adrenal function.

    Hope this helps you...

  • @Roadrunnergreg, this is wonderful info! I'm copying all this invaluable stuff in a doc so I can refer to what everyone is suggesting :) I don't know what MGP is (?) I get between 2500-5000iu A daily (depending on when I forget/remember to take my multis), but it sounds like I need to add more if I'm ever able to increase my D intake again. Thanks so much for this :)

  • MGP means matrix gla protein, no problem with the info... K2 also alters osteocalcin for absorption too...

  • On the days that I take Vit D, I also take Vit K2.

    I take Magnesium at night as it is a relaxant and can make you feel tired/sleepy. Magnesium is a co-factor of Vit D. Many people are, apparently, deficient in Magnesium.

    Here's a link to my blog on Vit D. The link to my blog on Vit K2 is on the same page.

    healthunlocked.com/thyroidu...

  • Thank you, @Londinium! :D

  • wow, Londinium, what a video! I'm taking all that in and passing the link to loved ones :)

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