No Such Thing!

Whelp! Another one down. I've been seeing different Endocrinologist for over a year now trying to get one to deal with my high PTH; it's in the 140 range. They've run a battery of tests and nobody has really pinpointed why the # keeps climbing. During the 1st year of this mess they put me on extra D and Calcitriol. I've been taking that for all this time and yet the number continues to rise. I've had T3, T4, etc. tested. I've had a 24 hour urine collection done; fine. You name it. So I finally landed at this guy today who told me (even though he hadn't tested me) that I could not possibly have a tumor on my Parathyroid (the common cause of high PTH) because my calcium isn't high. It's 9.5 or something like that. Apparently that's not high. Other Dr.s seem to think it is. Well then I show him my vitamin list and he proceeds to tell me there is no possible way that the Tender Vitamin D3-50 I take of Vitalady's is (a) real (b) FDA approved, and (c) good for me in these doses; malaborption or not. He tells me that "this person" (Vitalady) is selling me snake oil basically because it couldn't possibly have 50,000 IUs. Anyway, the diagnosis today was to lay off the D, stop taking the Calcitriol and retest levels in 2months. I'm so sick of this back and forth and feeling like nobody is really figuring out what's happening here. These people take months and months to get into then they waste your time like this. I'm beyond sad and quite confused. Do I seek out yet another Endocrinologist or see if his method will work? Ugh. Anyway, I thought the bit about the D3 was interesting and quite funny. He asked me over and over about it. 

Depending on how low or high your D is now, you may even need more then the one dry D3 50. I take 2 during the night, I found that this is the only way the D will come up to a good level on me. 

Your PTH is affected by your intake of Calcium Citrate, Magnesium Citrate, Vitamin dry D3 and Vitamin K2. There are some people that take Strotium to help keep the levels like they should be, including the PTH.

I would contact Vitalady and ask her what ideas she may have. 

Those doctors quit often have no idea what it means when you malabsorb vitamins and mineral like we do. Plus they are not willing to be educated by us. 

Good Luck

What was your D3 on your labs? 

--gina

LOL a bit, but really shaking my head over his opinion on Vitalady's dry D3. In reality, his prescription D2 is closer to snake oil. His idea of D is oil based D2, his is FDA approved - so what, and his oil based D2 wouldn't do anything for you because you would not absorb it. My D3 is coming in consistently around 100, up from 18, using only her dry D3.

One thing I've heard is that your PTH can remain high once it gets high and may stay elevated even though everything is functioning properly, but you say yours is still climbing. I'd be wanting to know what's going on too. I wish I knew of an endo in your area that has been educated on our malabsorption. Please keep us posted.

--gina

To keep my D above 50 I take it 4 times a day.  I spread it out with the Calcium and Magnesium that I take 6 times a day.  Some of us need more (not less).

~Becky

Hi- I am reluctant to post this since every time a MD sees how much vit. D I take per day they I'm nuts and should be toxic.  It takes me 500k per day in order to keep my D in a good range and my PTH w/i normal limits.  Yes, that is 500,000 units per day.  I take it in 4 batches and use Vitalady brand.  My D tanked shortly after surgery due to not supplement adequately and my PTH was over 100.  It has taken me 2 years to regain my D levels and for the PTH to normalize.  For me it is not a quick process which makes it all the more vital that I religiously take my vitamins and check my levels.  I would not personally stop calcium nor vit. D.  It really sounds like the endo. doesn't understand the DS.  I too would talk w/ Vitalady.  Good luck.

Just for ****s and giggles last year, I tried my new endo's suggestion of liquid calcitriol for one month.   My D sank faster than the titanic!   I finally got my D up to a 52 and my PTH to drop down to 100 by taking 150,000 k of D a day - 50 k iu of Vitalady's, 100 k iu of microlingual D, PLUS K1, K2, and boron.    I also took my D with either whey or coconut oil.   I have struggled with my D for years and years, and in one month, my D went from a 30 to a 52, and my PTH from a 196 to a 98.   It was the addition of the K2 (MK 4, which is pricey) that brought my PTH down.   

Good news! I hadn't read that you'd got your D straightened out. Excellent!

--gina

Julie, So you took 1 Vitamin K1, K2, and Boron a day plus a Vitamin D (150K) plus Vitamin D Microlingual each day. So 1 of each or 1 of the Ks and Boron with each Vitamin D? Thanks in advance.

Julie, what is the reason you take D with whey or coconut oil?

Do you do that with both the 150k iu of Dry D as well as the 100k iu of the microlingual D?

How much  K1, K2 and boron do you take?