How long will it take me to make myself REALLY sick? Vitamin D question. x-post

Ms. Cal Culator
on 10/14/11 1:49 am, edited 10/14/11 1:50 am - Tuvalu


I have trouble with Vitamin D.  I have to throw +/-150k IUs at it on a daily basis to get to this point:

Vit D, 25 OH--38 (30-100)
Calcium--9.5 (8.8-10.7)
PTH Intact--65 (14-72)

Not ideal, but within range.

Here's the problem.  I have a new endocrinologist.  I like her, even though she can't be a day over 15 years old.  She has RnY patients, but I'm her first DS patient.  She is willing to learn, but she is also--as you are when you go through medical school and all that--pretty sure she knows what she knows.

In orther words, I can't TELL her that my info is better than hers, I will have to SHOW her.   So you know where this is leading.

She is SURE that the stupid, oil encased capsules of D2 will do for me what the D3 is doing.  You know they won't...I know they won't...but I will have to SHOW her.  Once I do that, I think she will be more willing to listen to some of the wisdom I bring her from here.

She thinks I should stop the D3 and take an Rx Vit D every other day for a month and then have another blood test.  But she wrote the script for one every day, because she thinks we may have to go there.

How long will it take for the shortage of Vitamin D to start showing up in my bloodwork? 

I'm thinking of taking the Rx D for however long that is and then getting a blood test on my own and then doubling the dosage based on those results (she doesn't need to know who ordered that test) and then going in for HER test and based on THOSE results going back to what works.

But I don't want to die over being a good sport.

How long will it take?  Anyone know?


MajorMom
on 10/14/11 1:52 am, edited 10/14/11 1:54 am - VA
When Dr E was trying to bring my A and D up he tested every 6 weeks.

--gina

Prediction: What you might see is an increase D2 on your labs. They will add that to your low D3 and say "see, it went up". When what you really want is your D3 to increase.

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Ms. Cal Culator
on 10/14/11 3:47 am - Tuvalu
On October 14, 2011 at 8:52 AM Pacific Time, MajorMom wrote:
When Dr E was trying to bring my A and D up he tested every 6 weeks.

--gina

Prediction: What you might see is an increase D2 on your labs. They will add that to your low D3 and say "see, it went up". When what you really want is your D3 to increase.



Okay, so my labs tests previously said "Vit D, 25 OH," and her order says, "25 Hydroxy Vitamin D." 

Same thing, right?
beemerbeeper
on 10/14/11 2:11 am - AL
Personally I wouldn't play games with this doctor with my bones at stake.

~Becky


metamorphosis007
on 10/14/11 2:44 am
Perhaps you could ask her to consult with doctors that are familiar with DS patients? 
You gotta love livin', baby, 'cause dyin' is a pain in the ass.---Frank Sinatra
Mdae
on 10/14/11 2:46 am
I agree with Becky.  Rx D2 is garbage.  This kid needs to stfu and listen.



Ms. Cal Culator
on 10/14/11 2:57 am - Tuvalu

I need her help.  My spine is fine, but not as good as it was three years ago.  My hip(s) show osteopenia.  I don't want anything to get any worse.  I am not going to find any other endocrinologist who will listen to me.  I am going to atempt to be a compliant patent.

HOWEVER, I am not going to cooperate so long I really damage my health.  I'm just trying to figure out how long to take HER idea of Vitamin D before I take a blood test and prove that MY way is better.  Then we can move on and address my other issues.


Kayla B.
on 10/14/11 2:46 am - Austin, TX
I don't see why you need a blood test to prove this to someone when the peer-reviewed scientific literature is already available showing the very same thing.
5'9.5" | HW: 368 | SW: 353 | CW: 155 +/- 5 lbs | Angel to kkanne
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Ms. Cal Culator
on 10/14/11 2:53 am - Tuvalu
where?
Kayla B.
on 10/14/11 3:20 am - Austin, TX

The case against ergocalciferol (vitamin D2) as a vitamin supplement


Short and Long-Term Variations in Serum Calciotropic Hormones after a Single Very Large Dose of Ergocalciferol (Vitamin D2) or Cholecalciferol (Vitamin D3) in the Elderly

*note: just because this study is on elderly should in no way be taken as an impression of how old I think you are or that I think the word "elderly" describes you.  Just a study.

Vitamin D2 Is Much Less Effective than Vitamin D3 in Humans


Vitamin D absorption in healthy subjects and in patients with intestinal malabsorption syndromes

"In five of the seven patients with intestinal fat malabsorption, oral administration of 50,000 IU vitamin D2 did not raise serum vitamin D concentrations above 10 ng/ml."

Treatment and Prevention of Vitamin D Insufficiency
in Cystic Fibrosis Patients: Comparative Efficacy of
Ergocalciferol, Cholecalciferol, and UV Light

Subjects randomized to oral forms of vitamin D (D2 or D3)
exhibited significant increases in total serum 25(OH)D concentrations
(Table 4). The most robust increase in total serum
25(OH)D occurred in theD3-treated group
, where the final total
serum 25(OH)D was 47.1  3.1 ng/ml, resulting in a significant
total net increase of 25(OH)D of 25.3  2.8 ng/ml (P  0.001).
In the D2-treated group, the total increase in 25(OH)D concentration
was less impressive at 8.8  2.8 ng/ml (P  0.04) (Fig.
1A). In the D3-treated group, 100% of the subjects reached vitamin D sufficiency [25(OH)D30 ng/ml] compared with only
60% of those treated withD2 and 22% of those treated with UV

(P  0.001).

**Note, while this study does not directly deal with DS patients, cystic fibrosis patients exhibit an often very severe fat malabsorption, so often the results from their studies can be seen as applicable to us.  Their fat malabsorption is due to pancreatic insufficiency though (lack of enzymes).

How long did it take me to find 5 studies?  15 minutes?  There's tons out there.



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