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Going to see the doctor tomorrow. I have questions (Read 802 times)
Southfork
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Going to see the doctor tomorrow. I have questions
May 27th, 2021 at 4:35pm
 
Greetings from Cody, Wyoming,

I'm a long time lurker, first time poster. Was diagnosed about 13 years ago as an episodic Cher.  It's been 2 1/2 years since my last cycle.  I started the D3 regimen on May 1st.  It's definitely made a difference.  Pain levels are down from Kip 7-8 to 2-4. frequency down from 8 t0 11 CH a day to 3-4 a day. Very pleased.  Every year the local hospital offers a free health panel for employees and spouses. I had mine done on May 5th.  The results were as follows:

259OH)D3.       44 NG/ML

Calcium.           9.2. mg/dL

Creatinine (Serum).  1.1    mg/dL

PTH.  Not tested

From what I've read these are the tests that determine how well the D3 regimen is working. My main question is should I have these tests run now or wait until later?  My PCP IS A great guy and will probably agree to have these done at any time.  Thank you and stay pain free.         
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pattik
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Re: Going to see the doctor tomorrow. I have questions
Reply #1 - May 27th, 2021 at 5:35pm
 
Greetings Southfork!

It sounds to me like you are definitely on the right track if you are getting those results. Hopefully, Batch will chime in to guide you to faster results. The PTH test helps to determine problems that can arise from too high a calcium level (which yours is not). I believe the normal calcium range is 8.5-10.5. CH'ers should aim for a D3 level of 80 ng/ml on average. I actually need it higher.

Since you can get tests run on demand, I would suggest you wait to re-test until you get your levels up to a pain free stage. Then you will have a number you can keep track of in the future.

Congrats on your improvement. I'm glad to hear you are getting some good results. Very encouraging.

Take care,

Patti
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Southfork
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Re: Going to see the doctor tomorrow. I have questions
Reply #2 - May 27th, 2021 at 6:04pm
 
Thanks Patti,

According to the printout that I received normal calcium is 8.6 to 10.1, so you were very close.  Like I stated in my previous post my PCP is a great doc.  He's highly regarded as one of the best diagnostics in the area.  In fact he's the doc that diagnosed my CH, after years of hearing you have a sinus infection, allergies etc.  Most of us know that drill.  Yada Yada etc  Thanks again for your input. Take care. Mike
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AussieBrian
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Re: Going to see the doctor tomorrow. I have questions
Reply #3 - May 31st, 2021 at 10:19pm
 
How did you get on with the doctor,  Mike?

Hope it was all good and pointing to a happy future.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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Southfork
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Re: Going to see the doctor tomorrow. I have questions
Reply #4 - Jun 1st, 2021 at 1:37pm
 
I did meet with the doc, and will be retested on July 1st.† I'll keep everyone up dated when I receive the test results.† Thanks for the good wishes.† Mike
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« Last Edit: Jun 1st, 2021 at 1:39pm by Southfork »  
 
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Batch
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Re: Going to see the doctor tomorrow. I have questions
Reply #5 - Jun 3rd, 2021 at 12:23pm
 
Hey Mike,

Looks like you're off to a good start with the vitamin D3 protocol.† Keep it up.† It appears you may need a higher vitamin D3 dose in order to get your 25(OH)D3 up to the initial goal of 80 ng/mL.† That's where 80% of CHers respond to this treatment protocol with a significant reduction in the frequency of their CH and over 54% experience a complete cessation of CH.†

The online survey of CHers taking this vitamin D3 treatment protocol that's been running continuously since December of 2011, indicates some CHers require higher vitamin D3 maintenance doses than 10,000 IU/day to experience a CH pain free response.

As a side note, due to a heavy spring pollen season here in the Puget Sound area of Washington, that triggers allergic rhinitis, I've needed as much as 60,000 IU/day vitamin D3 to remain CH pain free.† This has driven my 25(OH)D3 as high as 271 ng/mL.† My PCP understands vitamin D3 therapy and as long as my serum calcium remains within its normal reference range, there's no hypercalcemia (too much serum calcium) so no vitamin D3 intoxication/toxicity.† He also watches my PTH to make sure it doesn't drop too low.† The following 4-year chart of my serum 25(OH)D3, calcium and PTH tells the story.

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Please understand, I'm not suggesting CHers take their 25(OH)D3 serum concentration this high.† Accordingly, this is just an example of what it might take for some CHers to experience and sustain a CH pain free response.

Take care and please keep us posted.

V/R, Batch
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Southfork
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Cody Wyoming
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Re: Going to see the doctor tomorrow. I have questions
Reply #6 - Jun 3rd, 2021 at 6:41pm
 
Batch

Thank you for your reply.  I'm currently taking 10k D3 daily.  I'm still having 2 to 4 CH a day.  Some are Kip 1-2 and d take a easily aborted with an energy drink and O2.  Some are Kip 4 - 6 and usually take a while longer.  Do you think that I should try a higher daily dose of D3 ?  Maybe  20k to 30k to see if that will make a change ?   Thanks Mike
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