Vitamin D, PTH level documentation

[Beverly N]

Are there any links from one of our DS surgeons (Rabkin, Keshishian, etc.) that shows what our blood test ranges should be? I'd love to see something for all of the recommended blood tests, but for me in particular I need something to send to my PCP regarding Vitamin D especially. Mine has tanked....my own fault for listening to the doctor. Back in April 2015 my level was at 111, and the doctor freaked and told me to stop all supplementation. I had been taking 50,000 iu 3x a week. So, I stopped. By February 2016 I was at 74.2. Just had it run (at my request) on September 30th. So the doctor's office calls and says "Good news! Your D is fine." I say, well, what is the number? And she says "It's 36.4!" Well, after I pick my chin up off the floor I say, well, that's not good for me as I have had a DS and I should be nearer to 100. This time she picks her chin up off the floor. Anyway, she says she'll talk to the doctor about it. She calls back later today and wants to know who has told me this. I try to explain, but she wants to know if my surgeon - or any surgeon - told me that I should be near 100. I kind of bobbled and did the old "cause I said so" thing. Ugh! Anyway, I would love to have something "official" - that is, from a surgeon's office, or a study or something - to pass on to her so I don't sound like a blithering idiot. Oh, and regardless, in the meantime I'm re-ordering my mega-doses of D3!

 

[DSRIGGS]

http://articles.mercola.com/sites/a...-to-get-your-vitamin-d-to-healthy-ranges.aspx

Also you can tell them that the reason we as DS Patients need to be close to 100 is:

1. There is direct and inverse relationship with PTH and as DS patients we are at significant risk of bone health issues so keeping optimum D levels and PTH levels are of paramount importance for a DS patient.
2. As DS patients with significant malabsorbtion we can tank very quickly and need a cushion.
3. Then ask them to document toxic effects of anyone with a vitamin D level of 110.
4. Finally, ask them when the last time they bothered to stay current with medical trends. Okay you might not want to ask that one, but......

 

[southernlady]

I tend to ignore my docs on vit D. Oh, and B12 as well. I don't take extra B12 and it always comes back over 2000. Has most of my life. But on the D, they tell me to drop it and I just keep taking it anyway.

What was your PTH those times...that would be MY proof.

 

[Beverly N]

Thanks for the replies and the link. I just got my PTH results back. Stupid me, this is the first time I've had my PTH tested. Here are my values:

PTH: 33.7 Range: 7.5 - 53.5
Calcium, serum 8.9 Range: 8.6 - 10.6
Vitamin D, 25 Hydroxy 36.4 Range: 30.0 - 100.0

I also just got my new order of D3-50000 delivered and started that today. So, I think I understand that our PTH should be closer to 15. Is that right?
How long should I be taking the Vitamin D before I have my D and PTH rechecked?

I left a message with my pcp regarding possible iron infusion, but haven't heard back yet. Here are my values:

Iron, serum 17 Range: 37-170
Iron binding capacity 466 Range: 250-450
%Iron saturation 4% Range: 9-55
Ferritin serum 8 Range: 11-264

Is this as bad as it looks to me?

 

[duh_Mom]

@Beverly N - yes that is certainly iron infusion numbers. The iron sat is very low - how are you feeling?

 

[Beverly N]

Thanks for asking duh_Mom. Quite fatigued actually, and intermittent light-headedness. I've always tended to run a bit anemic, ever since I was a child, so I didn't think too much about it at first. The results shown above were from July when I increased my iron to 2x daily, but still feeling pretty crappy. Hopefully the doctor will order new blood work, and if still bad, will order the infusions.

 

[southernlady]

Thanks for asking duh_Mom. Quite fatigued actually, and intermittent light-headedness. I've always tended to run a bit anemic, ever since I was a child, so I didn't think too much about it at first. The results shown above were from July when I increased my iron to 2x daily, but still feeling pretty crappy. Hopefully the doctor will order new blood work, and if still bad, will order the infusions.

I wouldn't wait...ask for help NOW.

 

[Beverly N]

I had my iron/ferritin levels checked again. They did improve very slightly with the extra oral iron, but not close to enough.

New levels:
iron, serum was 17, now 30 Range 37-170
iron binding capacity was 466, now 462 Range 250 - 450
% iron saturation was 4%, now 6% Range 9-55%
ferritin, serum was 8, now 8 Range 11-264

Doc is going to order infusions. Yay! Hopefully I'll feel better soon.

 

[DSRIGGS]

Great news

 

[southernlady]

Glad your doc is ordering infusions. Too bad your ferritin had to get below 50 to get them.