Calcitriol? PTH? looking for answers please

[revisionDS]

hi all,
one of my endos wants me to take calcitriol since my PTH is high, wondering what experiences you all have out there. I know it is a balancing act with Vit D, CA, Mg etc. Would like to get some suggestions, I would prefer not to take the calcitriol and wondering if I should first try to increase my vit D to get it about 75 or so? I had increased my CA citrate to 3780 mg/day (12 pills/day) for 2 weeks, and the endo tested in 2014 and it didnt change the PTH. but with the same range I have now my PTH was normal (2013 normal PTH, vit D little high, 2012 normal PTH, vit D about the same as now, 2011 normal PTH, vit D about the same as now) My I am going to post some my labowork results for various year, I think 4 years will be suficient, with reference ranges ( ) any insight? suggestions? thanks for taking the time to help me sort this out.

2014:
total 25 OH vit D 64.1 (30-100)
24 hr calcium urine 38 (40-300)
PTH intact 94 (14-72)
Vitamin D 1 25 total 106 (18-72)
CA 8.8 (8.5-10.5)
Ionized CA 4.7 (4.2-5.2)

2013:
total 25 OH vit D 106 (30-100)
24 hr calcium urine 119 (40-300)
PTH intact 25 (14-72)
CA 9.2 (8.5-10.5)
Ionized CA 5.2 (4.2-5.2)

2012:
total 25 OH vit D 62 (30-100)
24 hr calcium urine 64 (40-300)
PTH intact 43 (14-72)
CA 9.2 (8.5-10.5) yes this is the same result as 2013, double checked
Ionized CA 4.6 (4.2-5.2)

2011: with the exception of 2011 all the above used the same hospital lab, 2011 different hospital lab
total 25 OH vit D 73 (30-100)
24 hr calcium urine 54 (100-300)
PTH 39 (14-72)
CA 9.3 (8.6-10.5)
Ionized CA 1.21 (1.13-1.32

edited to add CA intake now

 

[Elizabeth N.]

How much dry D3 as cholecalciferol are you taking?

 

[southernlady]

Other options to raise your D are patches (Company is PatchMD), Vit D injections thru your doctor/surgeon, or adding more Dry D3.

Interesting that in 2013, your D and PTH were FINE. What changed between 2013 and 2014? Did you make the mistake of listening to A doctor to lower what you took? Or did you change what you took?

Each of us need different levels. I personally take a Dry D3 50,000 M-F and 2 of them (total 100,000) on Sat & Sun to keep my D at 118. My PTH resides at 20. My doctors tell me to cut back but if I did, I drop REALLY fast and my PTH goes up as a result.

 

[DianaCox]

I take one 50K IU dry D3/day every night, and three days a week, I take a morning dose too. My D3 is at 88 ng/mL, and my PTH is 35.

 

[revisionDS]

thank you all for taking time out to answer my question(s). I take 1- 50K IU/day biotech D3. From Jan 2012 to July 2013 I took injections only and that is when my PTH was at the lowest, and my Vit D was at the highest at 106, and it was like OH NO it is too high, you know how that goes? so I said ok it doesnt have to be that high, and then the rest is history. and I think this is my problem, I think when my vit D starts falling -even though it is in "normal" range, my PTH increases.
So I was thinking of increasing my Vit D to 100k IU/day for 2 weeks, then do what Diana does and get retested in 4 weeks, my vit D should increase and I think my PTH would decrease. what does everyone think? I am glad I am not the only one who wants their D above "normal" and I think this is especially important for us DSers.
about much calcium citrate does everyone else take? even though I doubled mine it made no difference so I think it will be vit D increase for me.
again thank you

 

[DianaCox]

I actually do NOT want my D3 to be above normal - I want it at the high end of normal.

It is my understanding that too-high levels of vitamin D interfere with normal immune response, and are immunosuppressive. Thus, if you get a vaccination with high D3, it may do no good. Similarly, I do not want to suppress my response to "non-self" cancer cells or invading microorganisms.

There is a lot of information available at http://www.vitamindcouncil.org/, run by a Dr. Cannell. A few years ago, he responded to some questions about optimal serum levels for health, and his answer was to "take enough Vitamin D3 to get your 25(OH)D level above substrate starvation levels (50 ng/ml or 125 nmol/L)" and that natural 25(OH)D levels are (50-70 ng/ml). He also noted that "a flu shot probably will not generate an immune response in people with 25(OH)D levels above 50 ng/ml but that is simply conjecture. That is, the flu shot may not work, may not generate antibodies, in people with 25(OH)D levels above 50 ng/ml."

 

[revisionDS]

that is great info too thank you, I think I will shoot for >75 but <100 and I am sure my PTH will drop. I think it is a good idea to try this instead of going to calcitriol, I dont know many that do well with this?

Edit
and I think I didnt explain correctly, I mean since my D is in normal range I think ti would be best to be on the high end of normal at least and not <75 where it is now....thanks

 

[southernlady]

The problem with "normal" range for D is they keep moving the markers! When I was originally diagnosed with low D, the range was 15-55. Then it became 25-75, now it's 30-100. Hell, if the medical community can't decide, how in the hell do lay people keep up. I will keep mine at 118 +/- so that my PTH stays below 25.

 

[revisionDS]

lol southernlady, I know and I think if people knew how those "reference ranges" were established they would run for the hills. but after all the posts, I think I want to get my vit D higher than it is now, like I said <75 but <100, I know small range but I think i will try to do 100kIU/day up from 50KIU/day for 2 weeks, then do 50KIU/day and 3 times a week do 100KIU/day and see what my results are in 4 weeks. oh and I cant wait to have this conversation with one of my endos (I need to fire some specialists) I will let everyone know when I have more blood work, hmm by the time I start then have blood work, it coming back etc that will put us at about Christmas time, that should be interesting.

Would anyone like to post calcium citrate amounts please?

I am so greatfull for everyone coming out and giving me their info. I know we all absorb differently but it is nice to have a general range of DSers.

 

[Elizabeth N.]

Doubling your D and testing again in a while is cheap and easy .

 

[revisionDS]

sounds great!!! I will start tonight taking my vit d3 100kIU/day!!! and yes I think it is cheap and easy and I dont think anything "bad" can happen
thank you all