|
Post by Leonie on Oct 8, 2014 13:10:58 GMT -5
Until the two year mark my Vitamin D was fine, now it has been going down, down, down. Please help me think this through, and look for a possible solution.
Of course my PTH has been going up in sympathy, and my recent Dexa scan shows osteoporosis in the back. My doctor is ready to give me Reclast infusions.
I have been taking enteric coated Calciferol - D3. Each tablet has 50 000iu. We settled at 45 tablets per month. At the beginning of the year my level was 40, Seven weeks ago it was 30 (32 low), last week it was 25, in spite of me increasing the dose to 60 tablets and biting them the last three months. I have now increased it to 200 000iu per day.
I think I need to find a different form of Vit D. I know Dr K gives an injection. I will be mailing him a copy of this post, to try and find the company that supplies it. Perhaps we can import it.
I was casting around and found a compounding pharmacy with a Pharmacist who really listens to me. He immediately offered to make me a liquid compound, and said he could also make it a sublingual. He says he does not use plain Calciferol, but I cannot remember what pre-or suffix he added. He says it is more absorbable. He offered to call my doctor to get a script, and "walk this journey with me". I have hope.
Should I separate the D out from the rest and take it in the middle of the night? Should I bite the tablets to break the hard coating? Is there anything that might be interfering with the absorption? Currently I take it with my Multi, b-complex, zink, magnesium, Vit C, Vit K2, Puricos for Gout, estrogen and synthroid. I split all these in two doses, then do 4 Calcium doses.
Thank you for your help and thought.
|
|
|
Post by jpcello on Oct 8, 2014 14:43:28 GMT -5
I take 150K units of Vitalady D3. It's made by Biotech, which you can also get on Amazon. I've never done shots. I take all of my vitamins at three different times during the day (morning, noon, dinner). Never separated anything.
My dexa has also steadily declined over the years, even though my numbers have all been in the normal range (calcium, PTH, D). I am officially osteoporosis (I personally think my case is a combination of malabsorption and genetics). Just got a script for Reclast. Doc wants to wait until I have labs done, so will be doing that in the next month (annual labs in November). I was originally hesitant to do Reclast so I upped my calcium intake and started more focused weight training. Nothing helped so now it's gonna be Reclast.
Good luck and let us know how things go.
|
|
|
Post by Happy DSr on Oct 8, 2014 18:13:18 GMT -5
the Biotech or Vitalady Tender D3-50,000 that many of us take is called "cholecalciferol" This may be what your Pharmacist is referring to. The Tender/Biotech is dry, so is better absorbed than any kind of D that is oil based, as we malabsorb D. I am taking 3 of these daily right now for 150,000 IUs of vitamin D daily. I must import these from the US as they are not available in Canada I am also taking something called Rocaltrol (brand name) 0.5 as prescribed by my surgeon. The box calls it "cacitriol". There are small orange hard coated capsules - they look like candy. The box states that each capsule contains 0.5 mcg calcitriol. (When I try to do an online convertor I arrive at 20 IUs of vitamin D which seems low to me - I must be doing it wrong?) The manufacturer/distributor in Canada is Hoffman-La Roche. I didn't know if these are of any use, but because my drug plan covered their cost 100%, I figured they couldn't hurt. Web MD identifies "ergocalciferol" as D-2 and cholecalciferol as D-3 As I understand it, D2 must be converted to D2 before it can be metabolized. And our innards do not do this efficiently. So taking D-3 is preferable as we get right to the good stuff our bodies need. D2 ergocalciferol also goes by the brand name Drisdol When I Googled Calciferol I found all sorts of other forms of vitamin D, including Alfacalcidol, calcifediol, calcitriol, and dihydrotachysterol So as I understand it. for we DSers: ergocalciferol or Drisdol = D2 = waste of money cholecalciferol (BIotech or Vitalady Tender) = D3 = GOOD STUFF calcitriol (Rocaltrol) = can't really say for sure all the others...sorry don't have a clue Separating out any problem vitamin is a good idea. And taking it away from food too. I vote for the middle of the night pee break as a good time for your D dose. Dr K's blog talks about injectable vitamin D on blog.dssurgery.com/2014/07/injectable-vitamin-d-information.htmlGood luck Leonie. It is a long haul to get tD level up, once has slid down. It is good to know you are on top of it
|
|
|
Post by Leonie on Oct 9, 2014 0:25:38 GMT -5
Thank you so much for the excellent study! So my discovery of the day is that Calciferol does not = Cholecalciferol The first 18 months I had a stash of Vitalady Cholecalciferol that I was combining with the local one. I guess that is what was keeping me going.
So now we need to decide what size dosage of Cholecalciferol I should have to recover.
Should I have it as a capsule, liquid or sublingual?
|
|
|
Post by newyorkbitch on Oct 9, 2014 6:56:14 GMT -5
|
|
PeteA
Full Member
Posts: 221
Surgery Date: 4/15/13
Surgeon: Dr. Phillip Schauer
|
Post by PeteA on Oct 9, 2014 10:18:03 GMT -5
If you can get the same IU's of Cholecalciferol in liquid or sub lingual I would try that. I take the Biotech pills and they are doing OK for me ( 100k / day ) but I think that either of the other 2 forms would give you an even better chance of maximum absorption.
I don't see anything on your list of vits and meds that would interfere but I wonder about the synthroid. I think I've seen some posts about not taking that with vitamins but I have no first hand knowledge so I could be wrong.
I think it is great the pharmacist at the compounding pharmacy will work with you. Maybe Dr. K can help you with a formulation for the shots if you want to followup with that. From what I can tell US compounding pharmacies sometimes have trouble shipping between states in the US so I'm not sure you'll have much help on international shipping.
The only other thing I can think of is that some of us are trying trans-dermal patches of vitamin D but no one has any real results to report yet. They are lower dose but the hope is that since it is not absorbed through the stomach that it might be more helpful. I got some to try from patchmd.com. Dr K., in a webinar said they can be very iffy about dosages delivered based on where you put the patch, changing locations, hair, etc, etc so I think this is still very up in the air for DS people.
You're really doing a good job looking at alternatives. Good for you.
Pete
|
|
|
Post by Leonie on Oct 9, 2014 12:02:45 GMT -5
Thank you folks. Today I had a Reclast infusion, With an infusion of paracetamol for the possible aches and pains.
The Pharmacist will be supplying me with Cholecalciferol capsules at wholesale price. He is happy that I start at 200 000 for a week, then reduce to 150 000 until my levels have reached a happier place.
My iron and saturation is one point from low, but as my Hemoglobin is good, I will have to wait for infusions.
I feel like I have a better handle on matters.
|
|
|
Post by jpcello on Oct 9, 2014 12:29:45 GMT -5
Thank you folks. Today I had a Reclast infusion, With an infusion of paracetamol for the possible aches and pains. I'm very anxious to hear about this. I'm waiting until my labs next month, and them I'm also going for a Reclast infusion. I tried avoiding it but couldn't avoid it anymore.
|
|
Deleted
Deleted Member
Posts: 0
|
Post by Deleted on Oct 10, 2014 9:18:02 GMT -5
I had always thought that you needed to get the D into your intestines without being harmed by stomach juices. To me, biting the capsules defeats the purpose of swallowing the pill, to get past the stomach, and into the small intestine quicker, without so much time touching stomach acids.
three months of biting them, and you've gone downhill.. I would stop biting them, personally.
|
|
|
Post by aa on Nov 11, 2014 13:07:35 GMT -5
Thank you folks. Today I had a Reclast infusion, With an infusion of paracetamol for the possible aches and pains. The Pharmacist will be supplying me with Cholecalciferol capsules at wholesale price. He is happy that I start at 200 000 for a week, then reduce to 150 000 until my levels have reached a happier place. My iron and saturation is one point from low, but as my Hemoglobin is good, I will have to wait for infusions. I feel like I have a better handle on matters. How did it go? I just had my second Reclast Infusion on 11/7/14.
|
|
|
Post by Leonie on Nov 12, 2014 15:26:19 GMT -5
I guess it is time for an update. The reclast infusion gave me flu symptoms for about 3 days. I only really felt better after day 5.
An acquaintance agreed to bring some vitamins from the States for me. I got Biotech D3, Zink picolate and some Citrical Petites as I only get Calcium Citrate powder here. I am on 150 000iu D3 per day and will re-test in a month. It was cheaper than using the compounding pharmacist, but will use him if I have to.
Once again this site has come to the rescue by helping me to figure out that Calciferol is not Colecalciferol!
|
|
|
Post by jpcello on Nov 13, 2014 6:23:54 GMT -5
I guess it is time for an update. The reclast infusion gave me flu symptoms for about 3 days. I only really felt better after day 5. An acquaintance agreed to bring some vitamins from the States for me. I got Biotech D3, Zink picolate and some Citrical Petites as I only get Calcium Citrate powder here. I am on 150 000iu D3 per day and will re-test in a month. It was cheaper than using the compounding pharmacist, but will use him if I have to. Once again this site has come to the rescue by helping me to figure out that Calciferol is not Colecalciferol! I'm scheduling my reclast infusion this week. I've been waiting to get my labs done (doing that this morning). Thanks for the update on how you reacted to the reclast. I have been taking 150K of D3 daily for the past few years. Last year's labs were still in the normal range. I'll see what happens after today's labs. Good luck getting everything straight with your D. Hope it goes back up with the D3.
|
|
|
Post by aa on Nov 13, 2014 17:55:08 GMT -5
I guess it is time for an update. The reclast infusion gave me flu symptoms for about 3 days. I only really felt better after day 5... 3 days. Lucky!
|
|
|
Post by OnMyWay2Thin on Nov 13, 2014 20:02:31 GMT -5
Hope you are feeling good and have it all straightened out now!
Kelly
|
|
Kat
Junior Member
Finally in Onederland!
Posts: 76
Surgery Type: DS
Surgery Date: June 18,2014 (265 lbs.)
Surgeon: Dr. J.R. Salameh
|
Post by Kat on Nov 14, 2014 17:32:19 GMT -5
My last lab, my D was 6. My doctor put me on 5000 IU per day. I now question if that's enough considering others in this post are taking 50,000 - 150,000 IU / day.
|
|
|
Post by jpcello on Nov 15, 2014 6:34:02 GMT -5
My last lab, my D was 6. My doctor put me on 5000 IU per day. I now question if that's enough considering others in this post are taking 50,000 - 150,000 IU / day. Definitely not enough. How much have you been taking? Have you been trending down?
|
|
Kat
Junior Member
Finally in Onederland!
Posts: 76
Surgery Type: DS
Surgery Date: June 18,2014 (265 lbs.)
Surgeon: Dr. J.R. Salameh
|
Post by Kat on Nov 15, 2014 16:10:27 GMT -5
5000 IU per day.
|
|
|
Post by newyorkbitch on Nov 15, 2014 16:36:24 GMT -5
You need at least 50,000 IU dry D per day. Make sure it's the right type.
|
|
|
Post by Girlrocker on Nov 16, 2014 12:32:28 GMT -5
How are you feeling? I hope this gets in line for you. I've been taking 100,000 D3 for nearly 3 years, started a few months after my revision, get the dry 50,000 from Vitalady. Do you need any further assistance with a 'mule' getting it to you? I still had to have 2 VitD injections to get my level back up into low end of normal range, and so far it's staying there and going up. I'm due for labs again after the first of the year and will check.
|
|
|
Post by Leonie on Nov 16, 2014 15:04:01 GMT -5
Thanks Sharyl
I am feeling amazingly well this week. I know my iron has been good, so I think it is the D that is picking up. I will be testing this week.
I started back at the gym and could feel the energy boost after the second session. I am loving the feeling.
I am ok with vitamins for the next three months or so - just in time for your visit. - wink wink. We have been researching our import duties, and it seems like it could add up to 300% to the cost. So I will be looking out for someone who can bring it again by then.
|
|
|
Post by stillhopefull on Nov 17, 2014 10:07:56 GMT -5
Let me know if you contact Dr. K about the injection. I contacted him, he gave me the information on where to obtain the injection medication and NONE of my physicians will order it for me. I called the company and they have to have a script, anyway at that time they did. If you find out anything different, PLEASE let me know. The way medicine is so revenue driven today you would have thought one of them would have ordered it just for revenue alone.
|
|
|
Post by newyorkbitch on Nov 17, 2014 10:19:01 GMT -5
Why don't you ask Dr K to speak to your doctor/s?
|
|