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Vitamin D Level too High (Read 5145 times)
Jackie A
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Vitamin D Level too High
Aug 22nd, 2016 at 12:25pm
 
Has anyone experienced a Vitamin D level that was too high after being on the regimen?  I've been on it for a little under a month and no headaches which is great but I just had my level checked on Saturday and it's at 109.  I need to get it to 80.  Suggestions?  Thanks!
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Rumeke
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Re: Vitamin D Level too High
Reply #1 - Aug 22nd, 2016 at 1:37pm
 
Was your serum calcium checked at the same time? If not get it done and if in a normal range..you are good even with the high D25. I'm sure Batch will chime in and explain why. You don't have to get it to 80...just whatever keeps your CH at bay.

Judy
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Jackie A
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Re: Vitamin D Level too High
Reply #2 - Aug 22nd, 2016 at 1:40pm
 
Thanks Judy - I didn't get my serum calcium checked.  I didn't realize that I needed to.  What is the normal range?
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Rumeke
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Re: Vitamin D Level too High
Reply #3 - Aug 22nd, 2016 at 4:26pm
 
My PCP's labs show 8.7-10.3mg/dl. My PCP usually tests for my calcium level along with my D25 since I am taking a higher than normal dose.
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Hoppy
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Re: Vitamin D Level too High
Reply #4 - Aug 22nd, 2016 at 5:26pm
 
Hi Jackie, you could try dropping your intake of vitamin D and see how you go! 10000iu vitamin D/day should keep you around the 80 mark, I take 5000iu/day which keeps my levels around the 70 mark and CH free.

Hoppy
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thierry
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Re: Vitamin D Level too High
Reply #5 - Aug 23rd, 2016 at 3:09am
 
Hey Jackie,
Great to know that you are HA free  Smiley

I wouldn't worry about your reading at 109, some go way higher. I've been at 135 with no problems when i did a loading schedule after getting some hits in spring one year.
If I remember correctly, Batch has posted about MS sufferers that get relief from higher doses with no sign of toxicity.
Taking 10000iu/day should have you at around 80.
I seem to remember that you did a loading schedule, which got you Pain Free -PF- quickly, that's probably what brought you over the 80.
So, no panic being at 109, I'd say keep taking 10000iu/day and all should be fine or like Hoppy says, you could drop down for a bit.

All the best
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« Last Edit: Aug 23rd, 2016 at 3:39am by thierry »  
 
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Jackie A
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Re: Vitamin D Level too High
Reply #6 - Aug 23rd, 2016 at 9:08am
 
Thanks for the input.  I'm going to drop it to between 5,000 and 10,000 and get tested again in a month.
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Batch
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Re: Vitamin D Level too High
Reply #7 - Aug 23rd, 2016 at 12:33pm
 
Hey Jackie,

Thanks for the feedback with lab data and great question.  Please discuss the following with your PCP or neurologist, whoever ordered your labs.

Your serum 25(OH)D concentration of 109 ng/mL is just fine as long as your serum calcium stays within its normal reference range. As long as you're CH pain free and your serum calcium stays within its normal reference range (8.5 to 10.5 mg/dL), I wouldn't change a thing... but I would test again for serum 25(OH)D, calcium and PTH in a month. 

That said, I strongly suggest anyone needing to maintain a 25(OH)D serum concentration above 100 ng/mL in order to remain CH pain free, do so under a physician's supervision with frequent labs for serum 25(OH)D, calcium and PTH.  By frequent, I'd suggest monthly for a couple months to make sure these lab values are stable and every six months after that.

In response to your question, the following normal distribution curve comes from data reported in the online survey of 187 CHers taking the anti-inflammatory regimen to prevent their CH. 

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As you can see there are several CHers (~ 35) with serum 25(OH)D concentrations above 100 ng/mL... and more importantly, none of them reported a serum total calcium concentration above its normal reference range >10.5 mg/dL, that would be the real indication of vitamin D3 intoxication/toxicity... not a serum 25(OH)D above 100 ng/mL.

As long as your PTH is low, 18 to 24 pg/mL, (Normal Reference Range 17 to 70 pg/mL) while your 25(OH)D is above 100 ng/mL, there's little risk of your serum calcium going above 10.5 mg/dL.

Lets put this topic in perspective...

1.  The 25(OH)D serum concentration normal reference range of 30 to 100 ng/mL is a statistical average based on hundreds of thousands (if not millions) of 25(OH)D lab tests. 

2.  Current estimates indicate 60% to 70% of the population is either vitamin D3 insuficient < 30 ng/mL or deficient < 20 ng/mL.  That means the normal distribution curve used to determine the Normal Reference range is skewed to the left.

3.  The real indication of vitamin D3 intoxication/toxicity, i.e., Hypervitaminosis D, is a total serum calcium concentration > 10.5 mg/dL.  Serum 25(OH)D is only a general biomarker. 

4. There are several studies of vitamin D3 that concluded a vitamin D3 dose of 10,000 IU/day is safe and the actual 25(OH)D serum concentration associated with vitamin D3 intoxication/toxicity is > 200 ng/mL and likely closer to 300 ng/mL.

5.  If you had MS and were on the Coimbra protocol, you would be taking 1000 IU of vitamin D3 per Kg of body weight a day.  For a sleek rascal like me weighing in at 95 Kg, I'd be taking 95,000 IU/day vitamin D3 if I had MS.Most MS

MS patients on the Coimbra protocol can't use the 25(OH)D lab test because their actual serum concentration of this vitamin D3 metabolite exceeds the maximum upper measureable value for most commercial 25(OH)D assay methods.  Their physicians use PTH as the primary biomarker. 

That protocol also calls for the complete avoidance of calcium supplements and food types rich in calcium like all dairy products plus additional vitamin B12... and they must drink 2.5 liters of water a day to flush any excess calcium from their kidneys...  Otherwise, the Coimbra protocol is the same as the anti-inflammatory regimen.

6.  In the history of the FDA's Adverse Events Reporting System (FAERS), that's been running for over the 12 years, there has yet to be a single death attributed to vitamin D3...  You can't say that about Verapamil... Between 2004 and 2012, FAERS indicates 229 deaths attributed to verapamil.

7.  If you do exceed a total serum calcium concentration of 10.5 mg/dL, all you need to do is stop taking vitamin D3 for three to four weeks, (keep taking the rest of this regimen) and your total serum calcium concentration will fall back within its normal reference range.  When you resume the vitamin D3, keep taking 10,000 IU/day only skip a day. That will bring your total vitamin D3 weekly dose from 70,000 IU/week down to 60,000 IU/week.

8.  There's a risk - reward ratio for every course of pharmaceuticals and nutriceuticals (vitamins and minerals) taken at pharmacological doses to treat medical conditions.  Like the rest of us, you suffer from an a horribly painful and disabling disorder.  This begs the question, is the benefit of remaining CH pain free worth the relatively low risk of vitamin D3 intoxication?

After all that... If you're still uncomfortable maintaining a serum 25(OH)D above 100 ng/mL with your serum total calcium within its normal reference range... keep taking 10,000 IU/day vitamin D3 only skip taking it one day a week.

BTW, I maintain a 25(OH)D serum concentration between 120 and 160 ng/mL with my serum total calcium within its normal reference range during the heavy pollen season.  My wife has maintained a 25(OH)D serum concentration between 120 and 140 ng/mL for the last five years with her total calcium in the green... and she turns 80 in December...

One question... Are you taking vitamin K2 or the Super K with advanced K2 Complex?

Take care and please keep us posted.

V/R, Batch
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Jackie A
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Re: Vitamin D Level too High
Reply #8 - Aug 23rd, 2016 at 1:57pm
 
Batch, I truly appreciate you taking the time to give me this information.  I have an appt with my neurologist tomorrow so I will ask him to order a blood test for the serum calcium.  I am not taking vitamin K.  I've been taking a multivitamin that has 500mg of calcium and 25 mcg of Vitamin K.  I also have been taking 1 fish oil, 1 1200 mg of magnesium and 20,000 of vitamin D. I probably should have switched down to 10,000 of vitamin D last week but I was waiting to get my blood test first.  Hopefully my serum calcium will be in range.  I'll keep you posted.
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Jackie A
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Re: Vitamin D Level too High
Reply #9 - Aug 23rd, 2016 at 2:22pm
 
Sorry meant to say that the Magnesium is 400 mg and fish oil is 1200 mg.
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Batch
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Re: Vitamin D Level too High
Reply #10 - Aug 23rd, 2016 at 3:58pm
 
Hey Jackie,

Check your PM InBox, I've sent you some info.  You can find your PM Inbox under the date in the upper left corner of this screen.  Klick on the bold font you have
1 new message
.

Take care and please keep us posted,

V/R, Batch
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Rametto
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Re: Vitamin D Level too High
Reply #11 - Sep 10th, 2016 at 12:36pm
 
Hey Jackie,

I have chronic CH, exagerated out of desperateness and doubled Batch's recommended loading doses. I had liquid vit D drops and took my doses sublingual and swallowed after 5 mins (very effective way to absorb it).

With no initial bloodtest, 2 weeks of total 1'200'000IU and 2 week s of daily 10'000IU = very high serum 25(OH)D
439/176 nmol/ng per L,
Ca 2.32mmol/L (ok, so no Vit D intoxication),
PTH 1.6/15 pmol/pg per L (low but in range so ok I guess),
feeling fine, feeling good, only shadows, painfree!

Stopped Vid D (but took the rest of the regimen) for 12 days and again painful CH attacks, 1 loading dose of 50'000IU and 10'000IU per day. Cluster went again away after 3 days, no pain, only shadows.

Just made a bloodtest one month after the first one, I'm at 364/140 nmol/ng per L and feeling fine. Started B50 in the meantime.

CH in total remission since weeks, no attacks whatsoever, sleeping fine, can eat everything, can drink beer without 'paying in pain ' for it. Every week or so a very very light shadow, just enough to remind me being thankful that the time of suffering heavily 4 times a day is over.

In the weeks with VERY HIGH VitD serum, I experienced:
* coughing with expectorating a lot (like taking Fluimucil)
* too light sleep (also reported in one of Dr. Gominak's videos), being aware of short wakeups during night, but not feeling tired after waking up in the morning
* very tired during the day without any apparent reason (because of strange sleep?)

Phil
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« Last Edit: Sep 10th, 2016 at 2:32pm by Rametto »  
 
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Peter510
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Re: Vitamin D Level too High
Reply #12 - Sep 10th, 2016 at 2:05pm
 
Phil,

Thank you for a very informative post.

Wishing you ongoing PF days,

Peter.
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