Darren Posted August 11, 2019 Share Posted August 11, 2019 I tired to PM @Batch, but the system said he can't receive messages. Wasn't sure how else to ask this question....so.... BATCH - First of all; THANK YOU for everything that you do for this community. I have read a ton of your posts on the D3 regimen, and your willingness to help is invaluable. I am sure it does not get said enough; so, again, THANK YOU. I have ordered all of the vitamins and minerals for the D3 regimen. Unfortunately, I'm not having any luck getting my levels tested. I live in Ontario, and the Canadian government stopped D3 tests back in 2010, as basically every Canadian is at insufficient levels. I've been looking online for other places that I can go to get tested out of pocket. But, so far, haven't had much luck. My question to you, is that I know it's important to test so that I know initial levels, as well as levels once on the regimen (so that I can stay in the goal range). Without the tests, I'm a bit concerned about doing the loading dose. I realize that the loading dose helps to get the levels up in 12-14 days, whereas without the loading dose, it could take 2-3 months. Wondering from what you have heard from others; is it fairly common for people to take this approach if they can't get the tests done? Others feel free to chime in if you have done this. I am still looking into the testing and will be making some calls tomorrow (Monday) to private labs. But, just trying to see what your thoughts are, if I can't get the tests. I did speak with my neurologist, as well as my PCP, and both gave me the same response about not being able to order the tests. They know my condition, and my neurologist knows of low D3 levels being common in CH patients. But, wasn't familiar with your full regimen, and suggests that I only take "normal" dose levels of D3 daily. I am ok with following the maintenance dosages if it's a common thing that people do even without the tests. Thoughts? Thanks again. Quote Link to comment Share on other sites More sharing options...
Darren Posted August 11, 2019 Author Share Posted August 11, 2019 Also open to feedback from others in Canada that may have ordered tests out of pocket. Quote Link to comment Share on other sites More sharing options...
Freud Posted August 12, 2019 Share Posted August 12, 2019 You probably need a doctor to order the test and pay out of pocket for it. If you were to tell a doc you took the loading dose they are kind of obligated to run the test and often call it an overdose... that’s what my friend in the states had to do. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Zookah Posted August 12, 2019 Share Posted August 12, 2019 Ya exactly what Freud said, I told my doctor I was going to try it, he advised against it and I went against him being desperate. He ordered the tests for me to take at a private company, my insurance ending up covering it but each test was around 80. He orderd me to get tests every three months to just check on the levels of magnesium and calcium hes not too worried about the Vitamin D. Warning me that too much vitamin D will cause Hyperglycemia. Everyone's bodys are different but I wouldn't take the regimen without those tests every so often and the initial one. Best of luck to you !! Quote Link to comment Share on other sites More sharing options...
xxx Posted August 13, 2019 Share Posted August 13, 2019 Hey Darren, Zookah gave you the best advice. Your healthcare system in Canada does not cover routine 25(OH)D lab test unless there's a potential medical emergency. You can try telling your PCP/GP or neurologist you're taking 50,000 IU/day vitamin D3 and want to make sure it's not causing hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity. If your PCP/GP is on the ball, he'll order a lab test of your serum calcium as well. If that doesn't work, you can order a DIY 25(OH)D home blood spot test kit from GrassrootsHealth at the following link. They will ask you to join their D*Action program and register (it's free). The D*Action program tracks people taking vitamin D3 with a questionnaire and 25(OH)D lab tests. The charge for the home 25(OH)D lab test is $65 USD. I've used it many times and keep a D*Action test kit on my desk at all times. https://grassrootshealth.net/project/order-home-test-kit/ The assay method used for this DIY home test for 25(OH)D is called LC-MS/MS (liquid chromatography dual mass spectroscopy). This is the only assay method I suggest as it's capable of measuring total 25(OH)D serum concentrations up to 512 ng/mL, where the DiaSorin assay method, chemiluminescent immunoassay (CLIA) is only good up to 117.4 ng/mL. This is important as many CHers need to elevate their serum 25(OH)D above 120 ng/mL to experience a CH pain free response to this regimen. Regarding the safety of the anti-inflammatory regimen including the 12-Day accelerated vitamin D3 loading schedule... It's very safe. I've been providing information outreach on the this regimen since December of 2010. I estimate over 2000 CHers have started this regimen since then and I've yet to see a CHer report hypercalcemia as a result of following this CH preventative treatment protocol. The anti-inflammatory regimen is so safe I also have the rest of my family including three grand kids on this regimen and none of them have CH. The kids get a vitamin D3 dose of 50 IU per pound of body weight per day. For reference, I've had to take average doses of vitamin D3 up to 40,000 IU/day due to allergic reactions to pollen and mold spores in order to remain CH pain free. This has driven my 25(OH)D well above the 100 ng/mL upper limit of the normal reference range for this lab test as you'll see in the following chart of my lab results for 25(OH)D, calcium and PTH over the last 3 years. My PCP is OK with my 25(OH)D serum concentration this high as long as my serum calcium remains within its normal reference range... and as you can see, it has. I'm 75, in good health, and I don't take any Rx medications. It appears you've read enough about this treatment protocol to know that you'll need a second set of labs for your serum 25(OH)D, calcium and PTH when you've been on this regimen for at least 30 days. This is one of the reasons it's very helpful to have your PCP/GP or neurologist working with you in a team effort as you start this regimen. Accordingly, it may be helpful if you download a copy of the treatment protocol at the following link and take it to your PCP/GP or neurologist when you ask for the 25(OH)D lab test. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 It's interesting to note that readers of my web page at VitaminDWiki.com have downloaded over 34,000 copies of the above treatment protocol since I put it up online in January of 2017. When you have the results from this second set of labs in hand, please try to take the online survey of CHers taking this regimen. I'm using the results as part of a study to help neurologists and headache specialists become aware of the benefits of this treatment protocol so more CHers can experience the wonderful sensation of CH pain free life. To start this survey, click on the following link:http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 Thanks, take care and please keep us posted. V/R, Batch 1 Quote Link to comment Share on other sites More sharing options...
Darren Posted August 14, 2019 Author Share Posted August 14, 2019 Thanks all. I didn't have any luck finding anywhere local that I could go for bloodwork without a doctor ordering the lab test. Called several labs, and they all said they need to be ordered by a doctor. Started the regimen late yesterday afternoon, without the loading cycle, and just at the maintenance dose. I realize it will take longer for full effect this way. But I anticipate that my cycle will be done in about 15-20 ish more days anyway. So, it's more of a preventative at this stage, even with the loading cycle, which would have taken about 12 days. I wish I could have gotten the preliminary levels to share on the survey Batch. I honestly did try. I would have preferred to contribute the data to help the cause. . I'll check out grassroots though, and can perhaps order the test after being on the regimen 30 days. Because some of my other vitamins also had d3; it was either go with 8,400 IU/day, or 10,400 IU /day (I have 2,000 and 5,000 IU d3 gels). Started with 8,400. I realize 10,400 is probably more than safe. But, figured that either way, it's 8,400 more than what I'm currently getting on a daily basis. Maybe I should just go up to 10,400 though. I guess tough to say without knowing my levels... Anyway, again, thanks to all for the replies. Kind of feel like a letdown for not being able to get the bloodwork. But it's not for lack of effort. Quote Link to comment Share on other sites More sharing options...
Jeler Posted August 14, 2019 Share Posted August 14, 2019 I recently called my Neurologist and they informed me to contact my regular Dr. for a blood test. Well I called my family doc and they told me since I had not seen them since last September that I would have to schedule an office appt. first. Well that's Bull because my last appt. with him was 2 months ago (who's keeping records in this office?). I did inform both offices of the loading I was doing with Vit. D3 too. Not wanting to schedule yet another appointment I went online and discovered this site. https://www.privatemdlabs.com/ Insurance will not cover it but by the time I have an office appt. and an extra cost for blood work I figured it was cheaper in the long run to go with privatemdlabs. Total cost was $56.00 and the blood lab I set my appt. with is only 15 minutes away. Normal cost was $65.99, but found a coupon to save even more $$ ( in fact I always look for online code's/coupon's ) In fact I had my blood drawn this morning and they'll email the results to me in 2-3 days. 1 Quote Link to comment Share on other sites More sharing options...
Jeler Posted August 17, 2019 Share Posted August 17, 2019 Just got my results back on D3 Serum--my level was at 127. Normal range is 30-100. No wonder my attacks aren't with me anymore. Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted August 17, 2019 Share Posted August 17, 2019 Good news jeler! If you're in the US you can also get the 25 (OH) D test online thru: https://www.lifeextension.com/vitamins-supplements/itemlc081950/vitamin-d-25-hydroxy-blood-test Sale price currently is $37.60 DD Quote Link to comment Share on other sites More sharing options...
xxx Posted August 18, 2019 Share Posted August 18, 2019 Hey Jeler, Thanks for the feedback on your CH and lab data. What brand/type of vitamin D3 are you taking? Having worked with over 100 CHers a year taking this regimen since December of 2010, your best bet is to continue your present dosing with this regimen and test again in 3 months. It's important to ask your PCP/GP to order labs for your 25(OH)D, calcium and PTH to get a good sensing of your calcium homeostasis. Take care, V/R, Batch Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.