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Osteoporosis Message Board


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DesertBloom-Well, I have heard that there is a high error rate with the vit d tests so- maybe that is all that is going on with your situation . I hope that is what it is. It does sound difficult with your bone spec. being in only one day a week. And, sorry to hear your endo is not so helpful. As you know I have dr. issues as well.Let me know how your vit d comes out and what if anything will need to be done.
At this time regarding the urinary calcium level- the endo says she thinks it is forteo and to decrease my calcium , which I did from about 800-900 to now about 600.She also wants me to reduce the vit d . I don't want to do that too much because I don't want the d level to go down. But, I guess I need to do that. And, she wants the rhuem. who I will see mid Jan to deal with it .I will also have a serum calcium and pth done though before seeing the rheum. So, it's all in process. The endo will work with the rheum , but I have to first see the rheum then she says they will talk and work things out together. Before the serum calcium test , I am not going to have the forteo for 24 hrs. so we will see how that comes out.On my previous serum calcium tests I had not done that.Generally the serum calcium came out ok , just at high end of range.I think I had way too much calcium over the past yr. I don't know if that affected some of the calcium readings - I sure hope I have not formed a kidney stone. The interaction of all of this is very confusing as Turquoise said it makes your brain hurt!
Turquoise-That is great to hear that your pain stopped shortly after quitting the Fosamax. You are fortunate that your doctor is at least aware of how important your d level is. My spine in-3.4 and my hips are somewhat better. I am postmeno about 6 yrs thinking of starting hormone therapy. I am on forteo now.Are you post meno , if so are you doing hormone therapy?
DesertBloom-Hi!I only took six capsules of the 50,000 about 8 months ago. I didn't want to continue with the D2 , nor take such a high dose at one time. I found various D3 capsules of 5,000 and 10,000. For a few months I took 5,000 a day. For the past 4 months or so I have used the 10,000 capsules and taken 30,000 a week(-approx. 4250 a day is what it works out to). I have taken a 10,000 on M, W, andFri . My plan is to at least cut this back to 2-10,000 caps a week-approx 2850 a day UNLESS I am told otherwise at my next appt. in mid Jan. Although right now I am thinking about a two week period without .
Did you read the back and forth with the Dr. Licata from Cleveland Clinic and the vit d expert about vit d while taking forteo and the possibility of hypercalcemia?
DB- Yes, it is the 2005 Licata article in the NEJM. The response to that is [url]https://content.nejm.org/cgi/content/extract/353/6/634[/url]. What you can view from that is very limited though. I did get further information from the library on this . The back and forth included the vit d specialist, also Dr. Krege from Lilly pipes in with a comment that usually the hypercalcemia is transient and indicated return to normalization in serum calcium was observed without reducing teriparatide, or calc/vit d supplementation. He ends his letter though stating-however a reduction in calcium supplementation may be considered.
Then Licata replies-He states where hypercalcemia persisted it appears that the patients would appear to have overused calc supplements.He then ponders why this would happen when there are physiologic systems that are in place to limit the absorption of calc as intake rises. He said the explanation may have to do with the increase in 1,25 di hydroxy in some patients. He concludes -advise patients to limit calcium.Also though goes on to speculate this lack of normal regulation may be like sarcoidosis in which normal control of 1,25 dihydroxy absent and vit d intake has a direct effect on 1,22 dihydroxy and on serum calc. Maybe this gives you some idea. There was also an article that Licata referenced aboutRemission of hypercalcemia and hypercalciuria in systemic sarcoidosis by vitamin d depletion. I'll try to put that in here for you.
ps-looked for more on the article and couldn't find more at this time.

As my urinary calcium was a 24 hour, it inevitably would reflect the forteo transient high calcium- wouldn't you think? I am going to be sure to have my serum calc. done next time in the trough period at 24 hrs. after the last shot. The endo only ordered the serum calcium not the serum ionized . The literature seems to generally talk about the serum calc. But, I notice you are usually talking ionized calcium. Why focus on the ionized calcium ? -inquiring minds want to know :)
Thanks, that's the article I was talking about. But what I don't understand in that is Licata states that Vit D supplementation may reduce the risk of hypercalcemia, but doesn't state the amount of supplementation. This was the same article that mentioned reducing cal by 50% also with Forteo. I've read so many articles that say high dose D supp. over prolonged periods, can cause hypercalcemia, so it's confusing. Since I'm not on a high dose I guess it doesn't matter to me, but you are and I think you are right your cal would go up if the urine was collected during the peak of Forteo absorbtion. If you cal level returns to baseline at 6-24 hours post dose, then what is collected during the first 6 would have greater cal concentration. Does that make sense??? Your cal blood and urine should go up if you give yourself the injection and down if you wait to take it after the test.

I just had the 24 hour urine cal, creatinine and NTx but won't get the results till I see the min met doc at the end of the month. I didn't do the injection until after I finished the collection (skipped one day). With me, every time I have the D, or cal checked I have to stop D and as much cal as possible. Since I'm only taking 25 mgs of cal (which I stopped) and the rest is from my diet, I'm not getting that much since I don't drink milk, but I do eat yogurt, veggies (with cal) and "ice cream" which I have to stop:mad: I'm really curious to see how your levels compare to the test where you took the Forteo and this one where you will get the dose after the test.

I'm not sure how much difference this all makes since I have nothing to compare it to, until you find out your results.

I was talking to someone about an Endo at UCLA who's suppose to be great, but he only see's patients 1 "night" a month and spends the rest of the time doing research. My min met doc mentioned that if I wan't to I could go to UCLA or USC for a second opinion, on this cal prob I could, but I just haven't made up my mind one way or the other. This all came up before the D situation, so I'll see if she brings it up again when I see her. I can't imagine going to someone with more limited hours than the dr I already have.

I can't tell you why they order ionized cal over total, except that it's my ion reading that is always high and the total is normal. I've asked about this many times, but never get an answer I can understand other than the difference between the two readings-ion cal checks "free" and total checks "bound" cal, which doesn't answer my question. Actually I've had both tests done about the same amount of times, but only the one comes back high-with no real explanation-other than they don't know:(

Has your 125 ever been out of range? I can't remember if you ever said it was. Mine has been about 5 times in 19 mos, but this last reading was normal when the D 25 was (8.8).

Well my head hurts just thinking about all this stuff, good luck with the test and let me know what you find out.:angel:
Ditto-head hurts here too!!!!:)

One other thing I thought about pertaining to your situation and your excellent results with forteo. Had you ever thought that perhaps your one month period off of forteo may have had a positive effect? What I am thinking is that your one month off may have resulted in a decrease in your bone turnover slowly trending lower which it would do without the forteo.Then , when you restarted forteo, you had a ramp up again. Do you recall some researchers alternating several months on, then bisphos, then on again-sort of what you did but without the bisphos you did get a second cycle into the forteo.What do you think?
I will let you know how the serum calcium turns out. Yes, the 1,25 was out of range this last time.Prior to going on forteo , the 1,25 was mid range. It seems to have something to do with the forteo and the high dose d.
About the endo with really reduced hours and evening appt. Sounds like that would be difficult. Was you ionized actually out of range or just hugging the top level of the range?
Are your docs really concerned about the ionized calcium ? Maybe your min met doc could say whether she thought it would be worthwhile for you to see that endo?

Did your min met doc tell you to cut back the cal and the vitd as much as possible prior to the tests??Did you say that your vit had 25mg of cal -or was it 250. I can hardly believe they would just put in 25. In any event , it sounds like you are not taking any supplemental cal at this time- is that right? I guess I will have to consider changing my multi with 250 mg cal if I get a high serum cal.About your lab results do you really have to wait almost a month to get results? Can't you get the results from the nurse?
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I recently reviewed my questions that I have had when I have seen various docs about the bone project that is underway. And, I realize I still have the same questions. Sometimes do you think as I do that we get some more info but the questions just remain unanswered??
Hi Osteo: Your thought about the month off of Forteo certainly makes sense, but to tell you the truth I never thought of it that way. I was on Actonel for about 15 mos, one of which was the mo I started Forteo and was taking both, then my min met had me stopped that as soon as she found out about it. Then when she took me off of the Forteo several mos later, she had me start the Actonel again, so I wouldn't loose any gains while off the Forteo for a mo. So you're probably right, that may have had something to do with the unbelievably gains in the DXA.

I definitely remember all the research on the intermittent therapy with bisphos's and Forteo and how your dr, at the time, wanted you to do that.

You asked if my drs are concerned about the cal level and I would have to say yes, but they don't seem like it's a life threatening problem since my scores have never gone beyond 5.8 (at the highest) ref range on ion is 4.5-5.5, so my score was almost always above 5.5 (it was 5.6, 5.7, and 5.8) around 16 times in 19 mos. The lowest was 5.5 (top score of ref range) which they consider normal. Since I don't have any of the symptoms of hypercalcemia, my min met dr felt that my body had adapted to these levels, but she told me to watch for the symptoms of it and if I had any to call her immediately. Well that never happened... Drs will put you in the hospital if the ionized is 7.0 to 8.0 or higher, or at least mine will, but I don't know what they do for it.

Every time I have a cal or D test done, I have to stop both of those, plus the Forteo, by taking these after the blood is drawn. However, with the last D tests and I had to stop taking D for 2 weeks.

My min met already told me that she thought it was a good idea to see another Endo on the cal, but she tried to get me in to see the Endo at LLU and they won't see me. I was actually turned down by the head of the Endocrinology Dept, so there was nothing she could do to over ride that decision. I still don't know actually why they refused the appt, but I heard things like they weren't taking any new patients, or my problem wasn't severe enough blah blah. That's when she suggested UCLA or USC because they are the closest teaching hospitals besides LLU. It's really hard just to get an appt at LLU and I've heard some terrible stories where people had to wait 5 mos, just to see the head of the Osteo dept, my drs associate. This lady I talked to fx'd her pelvis and both feet walking in her house, and waited that long to see the head dr down there. I got in really fast, and I don't know why other than my Endo set it up for me, I didn't call to get the appt. Some depts won't even consider seeing you unless a specialist, currently treating you, makes the appt.

My multiple has 25 mgs of cal, and I only bought it so I could get my other vits with a low amount of cal. The min met doesn't want me to take "any" supplemental cal, just what I get from my diet. That multiple was really hard to find, since all of them usually have 20 times the amount I'm taking. The dr doesn't know I'm taking that, but I can't imagine 25 mgs is going to do anything.:D

quote: [I]"I recently reviewed my questions that I have had when I have seen various docs about the bone project that is underway. And, I realize I still have the same questions. Sometimes do you think as I do that we get some more info but the questions just remain unanswered?? [/I]by Osteo"

MOST DEFINITELY!!!!!!!!! :angel:





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