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Post by Simba on Nov 30, 2014 22:18:02 GMT -5
hi all, After reading many posts I would like to lend my experience with Vit D3 injections and how any Dr can order them. I started taking VitD3 injections years ago. I have taking anywhere from 300K IU to 600K IU intramuscular depending on blood work. I will say my PTH was the lowest while on Vit D injections. For those who are struggling with the biotech dry VitD3 100K-150K IU/day to keep your PTH low, and your total 25 OH Vit D in the DS level, then Vit D3 injections are a great resource, this is how to order: First any Dr can oder Vit D3 injections, yep any dr that has RX privledges can order, but you have to find a dr that knows what the heck that is, I will warn you even endos (dont get me started on endos) dont know that you can get VitD3 injections in the USA, and that is just unacceptable, especially for bone endocrinologists. Understand there is a small population of patients that will need VitD3 injections and DS community is one of them and there are not many DSers out there, but enough that more Drs should know about Vitd3 injections, but we have to educate our medical staff. You also will have to find a compounding pharmacy, yes I have used a compounding pharmacy for years, do a search for your location under www.pcab.org/consumers. Some compounding pharmacies will also ship for free to your home and they are great with insurance approvals. If you are unable to find a dr to RX you one call your local compounding pharmacy and ask if they can suggest a local dr that they know prescribes them and you can call that office to make an appointment, you may have to do some footwork here but you have the DS you are used to having doors shut in your face, I know I am, be persistent. Naturopathy MDs come in handy and can RX a Vit D3 injection to a compounding pharmacy, I have used a naturopathy to RX me my VitD3 injections. I only pay $15. for this RX and it is for 6 months. Good luck PM me if you need more help. |
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Post by Mariposa(Heather) on Nov 30, 2014 23:06:05 GMT -5
Great info. I was told by my PCPs clinic that it would cost $1000- for an injection that my insurance would not approve because I am on the low end of normal but not under yet.
I will do more research, thanks for the encouragement!
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Post by Simba on Dec 1, 2014 19:29:32 GMT -5
that doesnt surprise me at all, ignorance is bliss...but remember this is no different than the ignorance surrounding the DS if you approach it like you wont take a ridiculous reply like the one you got. Not sure what your PCP thinks the low end of normal is, but for a DSer you really want your low end to be no lower than 70, once it starts to dip lower than that is when you have a tendency to start to have increased PTH (secondary hyperparathyroidism is more complex and involves many organs, feedback loops and vit/mins-but this is for simplicity) dont let anyone tell you a 30 is normal for a DSer and save your bones. I live in a state that does not do the DS, no bariatric surgeon will accept me as a patient, I have a great PCP who lets me self direct my care, I also have 2 endocrinologists (I am going to fire one of them soon) neither one has heard of VitD3 injections, and one is a Yale Bone endocrinologist. I tell you this because you are not nuts, if something doesnt feel right when someone responds to you, look elsewhere. keep advocating for yourself and your health.
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Post by goodkel on Dec 1, 2014 20:31:03 GMT -5
Good info to have. Thanks for posting it!
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Post by nursemelanie on Dec 2, 2014 15:58:07 GMT -5
I have had a vit D injection, but the compounding pharmacy wouldn't bill insurance and it was between $25-$50. I'm over due for another. Thanks for the post.  |
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Post by teetster on Dec 3, 2014 13:05:58 GMT -5
Thank you for the info, I think the hard part is finding a doctor that knows how to prescribe it. I have asked every doctor I go to, including my endocrinologist and weight loss surgeon, and they don't know anything about it.
I even physically went to every compounding pharmacy in my area, which is quite large, and talked to the pharmacists. They could not help me either. They said I would need to find a doctor that knew how to prescribe it. They had no recommendations on which doctors locally could prescribe.
So, I did all the legwork, but don't know what else to do. Any ideas?
BTW, I am in Virginia Beach VA.
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Post by Simba on Dec 3, 2014 15:25:26 GMT -5
try a Naturopathy MD, sometimes even some OB/gyns as they tend to be more progressive I got mine from a Naturopathy MD, and like I said even my bone endocrinologist had not clue, just like the DS you have to be peristent. hopefully you will find someone who is familiar with ordering
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Post by goodkel on Dec 3, 2014 21:26:03 GMT -5
I have had a vit D injection, but the compounding pharmacy wouldn't bill insurance and it was between $25-$50. I'm over due for another. Thanks for the post. Did Dr. Boyce prescribe it for you? I was thinking that it would be very helpful if we could get the info about how to prescribe from your doctor. Then this knowledge could be passed along to other prescribing doctors. |
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Post by cherylbaker on Dec 4, 2014 7:07:01 GMT -5
I have had a vit D injection, but the compounding pharmacy wouldn't bill insurance and it was between $25-$50. I'm over due for another. Thanks for the post. Did Dr. Boyce prescribe it for you? I was thinking that it would be very helpful if we could get the info about how to prescribe from your doctor. Then this knowledge could be passed along to other prescribing doctors. With all this talk about vit d injections (and even pre ds i had problems with vit d) i read some stuff on the internet (and you can't believe everything you read there).. but the articles i read said vit d injections are d2 and that is not the vit d we want. You want d3 and the dry d3 we take should be the prefect d to take.. What do you all say about this? I asume you guys were taking the dry d3 and it didn't help? How much were you taking and what were your levels. My d is at 28 which is 10pts higher than it was pre ds and i was taking supposedly an inadequate amount of vit d since my ds. |
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Post by caprice on Dec 4, 2014 8:29:13 GMT -5
(I screwed up the quote thingy, but, cherylbaker said: "With all this talk about vit d injections (and even pre ds i had problems with vit d) i read some stuff on the internet (and you can't believe everything you read there).. but the articles i read said vit d injections are d2 and that is not the vit d we want. You want d3 and the dry d3 we take should be the prefect d to take..
What do you all say about this? I asume you guys were taking the dry d3 and it didn't help? How much were you taking and what were your levels. My d is at 28 which is 10pts higher than it was pre ds and i was taking supposedly an inadequate amount of vit d since my ds."
My response to her is: You are taking an inadequate amount of vitamin D.
I would be very uneasy about a 28. I was 107 two months ago, at my last blood draw, and my Doctor told me to knock it off. I was taking 100,000 IU per day. I knocked it down to 50,000. Not going any lower than that. I don't want my D dropping below 100 if I can help it. I'm getting another draw this week, so we'll see how much damage her advice has cost me, and I'll probably go back to 100,000 daily. |
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Post by cherylbaker on Dec 4, 2014 10:22:22 GMT -5
(I screwed up the quote thingy, but, cherylbaker said: "With all this talk about vit d injections (and even pre ds i had problems with vit d) i read some stuff on the internet (and you can't believe everything you read there).. but the articles i read said vit d injections are d2 and that is not the vit d we want. You want d3 and the dry d3 we take should be the prefect d to take..
What do you all say about this? I asume you guys were taking the dry d3 and it didn't help? How much were you taking and what were your levels. My d is at 28 which is 10pts higher than it was pre ds and i was taking supposedly an inadequate amount of vit d since my ds."
My response to her is: You are taking an inadequate amount of vitamin D.
I would be very uneasy about a 28. I was 107 two months ago, at my last blood draw, and my Doctor told me to knock it off. I was taking 100,000 IU per day. I knocked it down to 50,000. Not going any lower than that. I don't want my D dropping below 100 if I can help it. I'm getting another draw this week, so we'll see how much damage her advice has cost me, and I'll probably go back to 100,000 daily. Dunno how you can say im not taking enough since you dont know how much i was traking (or why you would say that when that wasnt the point og my msg and i clearly stated i was not taking enough ) But at any rate i am currently taking 100,000 against my surgeons instructions (which were to take 5000). Waiting for blood work in February to see how things are going |
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Post by caprice on Dec 4, 2014 10:38:56 GMT -5
Simba,
Sorry I had a part in hijacking your thread.
It IS helpful information, and I failed to thank you for it when you posted it.
So....
Thanks very much. I may be able to use this with my physican.
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Post by Mariposa(Heather) on Dec 4, 2014 11:47:31 GMT -5
I apologize if this posts twice, I seem to have lost my first reply somehow.
Simba, do you have the contact info for the pharmacy that ships for you? I haven't had any luck finding a compounding pharmacy in Oregon that does vit D, I would really appreciate the time saved calling around looking for one that ships. Thanks in advance,
Heather
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Post by nursemelanie on Dec 4, 2014 14:42:16 GMT -5
I have had a vit D injection, but the compounding pharmacy wouldn't bill insurance and it was between $25-$50. I'm over due for another. Thanks for the post. Did Dr. Boyce prescribe it for you? I was thinking that it would be very helpful if we could get the info about how to prescribe from your doctor. Then this knowledge could be passed along to other prescribing doctors. Yes Kelly, Dr Boyce's office ordered it and I'm calling them this week to get another order called in to the compounding pharmacy now that I am due for another. I will pass on any information I can get!! Sent from my SM-N900T using proboards |
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Post by Simba on Dec 4, 2014 16:55:06 GMT -5
Did Dr. Boyce prescribe it for you? I was thinking that it would be very helpful if we could get the info about how to prescribe from your doctor. Then this knowledge could be passed along to other prescribing doctors. With all this talk about vit d injections (and even pre ds i had problems with vit d) i read some stuff on the internet (and you can't believe everything you read there).. but the articles i read said vit d injections are d2 and that is not the vit d we want. You want d3 and the dry d3 we take should be the prefect d to take.. What do you all say about this? I asume you guys were taking the dry d3 and it didn't help? How much were you taking and what were your levels. My d is at 28 which is 10pts higher than it was pre ds and i was taking supposedly an inadequate amount of vit d since my ds. depending on the DS patient it is not atypical to take Vit D3 dry at 100-150K/day (your blood work would dictate this) my injection is NOT D2- ergocalciferol but D3 please reread the post, My RX specifically states Cholecalciferol. there are some patients even with a 100-150K/day of dry Vit D3 are unable to keep their PTH in normal range, these secondary hyperparathyroid patients should get injections to maintain bone health, prevent osteopenia and potential escalation to osteoporosis. DSer do NOT absorb D2, ergocalciferol (the Vit D RX) and there is blood work to confirm this: Vitamin D malabsorption 90393, which you take 50K vit d2 the night before and then are drawn for this test the next day, if you malabsorb D2 which DSers do you will have a "below detection levels" like I did and the endocrinologist had me take 100K-still absorbed NOTHING. Low vit D25OH pre op is very different than PO DS, and low vit D of 28 is actually not atypical, and relatively easy to bring to within normal range. A DSer really should not go below 70 ng/mL, but try not to go above 100 ng/mL for normal bone health |
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Post by Simba on Dec 4, 2014 17:02:11 GMT -5
(I screwed up the quote thingy, but, cherylbaker said: "With all this talk about vit d injections (and even pre ds i had problems with vit d) i read some stuff on the internet (and you can't believe everything you read there).. but the articles i read said vit d injections are d2 and that is not the vit d we want. You want d3 and the dry d3 we take should be the prefect d to take..
What do you all say about this? I asume you guys were taking the dry d3 and it didn't help? How much were you taking and what were your levels. My d is at 28 which is 10pts higher than it was pre ds and i was taking supposedly an inadequate amount of vit d since my ds."
My response to her is: You are taking an inadequate amount of vitamin D.
I would be very uneasy about a 28. I was 107 two months ago, at my last blood draw, and my Doctor told me to knock it off. I was taking 100,000 IU per day. I knocked it down to 50,000. Not going any lower than that. I don't want my D dropping below 100 if I can help it. I'm getting another draw this week, so we'll see how much damage her advice has cost me, and I'll probably go back to 100,000 daily. Caprice, may I make a suggestion, 107 is too high and may cause other issues, if you were taking 100k/day, I think the 50K a day will bring you too low, I would suggest doing 50K/dayX7days/week, and 100K/dayX3 days/week. While we dont want our Vit D on the low side, about 70-100 is idea, too high Vit D can cause is kidney problems, and we have to be careful with our fat malabsorption that causes enteric hyperoxaluria. |
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Post by caprice on Dec 4, 2014 17:11:13 GMT -5
Simba,
Thank you, I do appreciate your input.
I'm looking forward to my next labs, to see what happened, but I like the idea of "high/low" for daily purposes.
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Post by Simba on Dec 4, 2014 17:17:15 GMT -5
Simba, Sorry I had a part in hijacking your thread. It IS helpful information, and I failed to thank you for it when you posted it. So.... Thanks very much. I may be able to use this with my physican. LOL no appology necessary, you are more than welcome. Ordering really is as simple as "10 mL Vitamin D3 300, 000 IU/ML Injection" ALL compounding pharmacies would know how to make this, per USP and is actually very simple, www.pcab.org/consumers . The problem is NOT the RX it is finding a DR who knows what that is to prescribe it, no dr should prescribe something that they are not familiar with, but that does not mean they should not educate themselves. My bone endocrinologist didnt know they existed and I told her about them, she personally spoke with the compounding pharmacy and felt what with my short gut I would benefit with a one a year 600K injection as a supplement to my oral D3 consumption. |
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Post by Simba on Dec 4, 2014 17:35:18 GMT -5
Did Dr. Boyce prescribe it for you? I was thinking that it would be very helpful if we could get the info about how to prescribe from your doctor. Then this knowledge could be passed along to other prescribing doctors. With all this talk about vit d injections (and even pre ds i had problems with vit d) i read some stuff on the internet (and you can't believe everything you read there).. but the articles i read said vit d injections are d2 and that is not the vit d we want. You want d3 and the dry d3 we take should be the prefect d to take.. What do you all say about this? I asume you guys were taking the dry d3 and it didn't help? How much were you taking and what were your levels. My d is at 28 which is 10pts higher than it was pre ds and i was taking supposedly an inadequate amount of vit d since my ds. Cheryl A Vit D (and I am going to assume this is 25OHVitD) of 28 for a DSer is grossly low, as a normal patient you could raise this to the about 50 (I am using 50 as new scientific data suggests 30 is too low and the reference range should be changed) range fairly quickly with 5k vit d/day. As a DSer things are very different. If you take 5K Vit D you will never get your levels in DS normal range which is about 70-100. bone health is very important for a DSer, at that level I would be surprised if your PTH was not elevated, hopefully you are following your Ca with PTH intact, and ionized Ca. While your surgeon is an excellent surgeon, I will caution you that most surgeons while excellent surgeons really are not great when it comes to follow up. I would suggest to a fresh PO DSer to start with 50K a day, check after 3 months if levles are normal then keep it there, yours is low I would suggest 100K/day for 2-3 weeks then retest. It will take some tweeking. And since you are a new PO your true absorption will not be known till you undergo intestinal adatption at about 18-24 months PO. I dont want my Vit D too high and keep it below 100, but I dont want mine less than 70 either, protect your bones. |
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Post by Simba on Dec 4, 2014 17:46:16 GMT -5
Simba, Thank you, I do appreciate your input. I'm looking forward to my next labs, to see what happened, but I like the idea of "high/low" for daily purposes. You are very welcome, I actually dont like the word "vitamin" makes it seem like no big deal, a better more appropriate word would be "hormone D" since it functions as a hormone. Be careful how much Vit A you take, just take enough to be normalized, increased Vit A results can cause bone conditions to worsen and cause issues in creating new bone cells. |
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Post by Simba on Dec 4, 2014 18:26:39 GMT -5
I apologize if this posts twice, I seem to have lost my first reply somehow. Simba, do you have the contact info for the pharmacy that ships for you? I haven't had any luck finding a compounding pharmacy in Oregon that does vit D, I would really appreciate the time saved calling around looking for one that ships. Thanks in advance, Heather hi Mariposa, my pharmacy does ship, but Oregon is not one of the states it ships to (I live on the east coast) so I called local ones near you from the link I sent out. Be very careful about who you get with your injectibles as in the last year there have been falsifications of sterility testing. Always use a PCAB pharmacy. any you are more than welcome I went to www.pcab.org and found a nearby location that ships: Custom Prescriptions Accredited Services: Sterile & Non-Sterile Compounding Address: 1200 112th Ave NE STE A102, Bellevue, Washington, 98004 Phone: 425-289-0347 Accreditation Dates: 3/23/2012 - 3/22/2015 Website: www.custom-prescriptions.comSpoke to George the pharmacist they do ship to Oregon and he can make the Vit D3 injection. You would have to get information about payment, expiry, etc. Now hopefully you can find a Dr to RX it for you and it is cost effective. |
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Post by Simba on Dec 4, 2014 19:00:23 GMT -5
Thank you for the info, I think the hard part is finding a doctor that knows how to prescribe it. I have asked every doctor I go to, including my endocrinologist and weight loss surgeon, and they don't know anything about it. I even physically went to every compounding pharmacy in my area, which is quite large, and talked to the pharmacists. They could not help me either. They said I would need to find a doctor that knew how to prescribe it. They had no recommendations on which doctors locally could prescribe. So, I did all the legwork, but don't know what else to do. Any ideas? BTW, I am in Virginia Beach VA. Sorry teetster I didnt see your question till now, my compounding pharmacy does ship to all locations in VA. Currently the sterile facility is under renovations and will be back in in about 3-4 weeks. this is the information, have the dr give them a call after the holidays and you should be all set. Johnson Compounding & Wellness Accredited Services: Sterile & Non-Sterile Compounding Address: 577 Main St, Waltham, Massachusetts, 02452 Phone: 781-893-3870 Accreditation Dates: 6/1/2012 - 5/31/2015 Website: www.naturalcompounder.comand yes, the hardest part is finding a Dr who is familiar with ordering this, as I said no dr should order something they are not familiar with. |
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Post by Mariposa(Heather) on Dec 4, 2014 19:17:23 GMT -5
Simba!
Thank you for taking the time to do that for me!!!
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Post by teetster on Dec 15, 2014 13:08:08 GMT -5
Thank you so much, I will be looking into this again!
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