Hi all- I am on forteo and concerned about my serum calcium levels which before and after forteo are on the high end of range or slightly out.(pth not elevated) The endo. advised reduction of calcium supplementation by a third. I am waiting on new blood test results. I just wondered if anyone here had any luck reducing blood calcium levels by reducing or stopping cal supplements?
DesertBloom -Hi to you as well. If you read this will you check my last post in PikaB's recent thread about the dementia risk. I wondered if you would share the changes you made on calcium intake and the results you achieved .
The Following User Says Thank You to osteoblast For This Useful Post:
Hi Osteo: Unfortunately nothing I've done has solved this Ca prob. When I was taking 1500 mg of supplemental Ca plus getting dietary Ca my total Ca was normal. When you read my Ca intake, you need to keep in mind that those figures don't represent total elemental Ca. Depending on what type of Ca you're taking the elemental value changes. Look at the link below that explains elemental Ca, and you'll see what I'm talking about, so I actually wasn't getting as much as 1500 + dietary totals.
I went to an Endo, for other reasons, and he ran an ionized Ca and it came back at 1/10th of a point out of the normal range, the first time. I personally didn't think much of it because it was barely out of range, and I wondered how accurate the reference ranges are, since they vary from city to city, and lab to lab. I also know that 10% of the population will "naturally" fall outside of reference ranges anyway. I don't know what to tell you on which test is better, total or ionized, but they usually don't do ionized unless you have some other medical problem that would precipitate the running of that test, or if you were getting ready for surgery.
I went off of all supplemental and dietary Ca and the ionized count stayed the same, and the other 2 stayed at normal. This all occured "before" I started taking Forteo. Since my urinary Ca and total Ca was always normal I decided to go on Forteo anyway. Just to be sure that the Forteo wasn't causing this after it was first noticed pre Forteo, they took me off of it for a month and ran the tests again, and all the counts stayed the same. Since stopping dietary Ca didn't work, I continued to eat the things I find hard to give up that have Ca, and it hasn't made any difference anyway.
I can't tell you what this means, and neither can the Drs I've seen. The normal things to check for elevated Ca were done and are still being done, and so far they can't find any cancer, sarcoidosis, etc. Because my PTH is normal I can't get anyone to order a parathyroid scan, so I can't say I have hPTH. I am having another test done in a week or so for PTHrp and will have to wait for those results. I'm waiting to get in to see another specialist at LLU, and I don't have the date yet. I've been told the wait to see him (Endo PhD) is long.
Maybe if you read some of the others posts on hyperparathyroid disorder the calcium question may be answered there. One thing I know is that no one will treat my situation as an emergency until my count goes above 8 (ionized) and my highest count was 5.7 (normal 4.5-5.6) depending on the lab. Frankly, I'm not going to worry about it too much unless I develope more hypercalcemic symptoms, I've got enough on my plate already I will continue to follow up on this, but not get stressed out over it.
Hi Desert Bloom...just wanted to mention that you don't have to have high pth to have a parathyroid adenoma. Most doctors have not yet been educated on this fact yet. I had a large parathyroid adenoma removed and never had a high pth level...not even borderline.
According to doc norman on parathyroid.com...the high calcium is sufficient to indicate hyperparathyroidism in 97% of the cases. You might want to check out his site, the section on diagnosis, and show to your docs. Good luck. liv
Hi Olivette: I've been to Dr Normans site, and got a lot of good info, I found the site about a year ago, so I'm familiar with all the conflicting info going around. I wasn't able to take the page I wanted to with me to my Drs appt. because my printer just gave out
I basically explained about the 10% of patients with a normal PTH and slightly elevated Ca, and they both said they've never ever heard of this. I've been trying to get someone to order a parathyroid scan, but no one is willing to give it a shot, saying my insurance won't cover it without a dx of high or low PTH. I've been dealing with this for over a year now, and it's really annoying. I'm having another PTH test in the next week, so maybe it will help me to get the scan (PTHrp).
Unfortunately there is no way I could get to Florida, so I've been trying to find someone that would agree with Dr Norman's info, and go from there, and so far no luck.
DesertBloom- Hi! As you know my high calcium level is a situation that is of concern to me. And, from you postings I know it is a concern to you. Would you , however, be so kind as to say exactly what your concern centers on? I guess putting it another way, what is your fear?? And, do you think your dr. shares the same level of concern about it?
Hi Osteo: My biggest concern about the calcium level is some form of undiagnosed cancer. I also have been having some really severe bone pain, and from what I've been told that corresponds to hyperpara, but since my PTH is always normal, I can't get anyone to justify a scan to find out if I have an adenoma. There are other bone diseases that could be of concern, but I haven't had any tests for them either. It may be somewhat far fetched to think of Pagets, or osteomalacia, in my situation, but it has always been in the back of my mind since I found out about the calcium, plus I don't have any of the symptoms other than the calcium/osteo problem.
My Endo mentioned having a whole body bone scan, due to the pain/calcium, but he hasn't ordered it yet. I'm starting to worry about my insurance covering these things since I've had about 10 nuclear scans in the last year.
My medical bills have been really expensive in the last 5 years, and I'm always worrying about when they might not cover something that has already been performed. So far, that has happened a couple of times. My insurance doesn't require prior authorization on outpatient tests, so you never know if they might not pay, until it's too late.
I really need to find a solution to the pain, because it's greatly affecting my daily life. The only problem is it may have absolutely nothing to do with the calcium level, and that's the problem.
It's hard to say if my Drs share the same level of concern, because at times they seem more worried than me, and at other times I think I'm more worried. That probably has a lot to do with the ebb and flow of worrying (if you know what I mean) because I know I don't remain at a constant state of fear. Some weeks I don't even think about it and some times I do. My main concern is to not let the stress get out of control, because I'm the only one that pays for that. I try to remain as positive as possible, but sometimes, especially when the pain is bad, I find that hard to sustain.
All my Drs feel that I have an inordinate amount of acceptance and patience, and they are dismayed by it, but who knows. If they want me to fall to the floor and cry, they've got a long wait for that. I can't remember the last time I reacted emotionally or angerly over a dx, sounds strange I know, maybe it's a form of denial, but I don't think so. I think it has a lot to do with the way I was raised and that was to put each foot in front of the other and get on with the difficulties of life, as hard as that can be. I was always told, when I was feeling sorry for myself, that there is always someone who's got it worse.
And now that I've babbled on too long I would really like to know what your fears are and do your Drs share the same levels?
I hope that helps in some way, but I'm kind of thinking you're looking for some other answer
Last edited by DesertBloom; 05-17-2007 at 04:49 PM.
so sorry for your pain desert. do you have a low vit d level? i know that can cause bone pain. other that that, i don't know. our bodies are wonderfully, perplexing mysteries, yes? they give us so much pleasure and so much agony. since we have to live in them ,we may as well enjoy the parts we can and coax the other parts to "happy up"! i hope you find your answers soon.
Hi DesertBloom - It did help me to hear your fears and your ways of coping with what you are facing. I really wasn't specifically looking for anything when I asked you the question. As I said, the high calcium concerns me and it appears to concern you as well. Having said it concerns us is one thing however, and I think it's much more informative to look into the nature of the concern. Your response was helpful in that regard. I'll share my concerns but want to first respond to yours.
I am very sorry to hear about your severe bone pain. If it's hyperpara , under the condition of high calcium but low pth, (I looked at the Norman site as well) that may be causing the bone pain then the parathyroid scan may be one of the easiest and least costly of the tests you could have that would give you at least some info. If your concerned about the insur. , and I can understand that, what do you think the cost of parathyroid scan would be - maybe $300 or alot more? Don't you think you could get your endo or pcp to order it?
Cancer is a concern. If you told your pcp or endo, couldn't a battery of blood tests reveal if there is any sign that your body is fighting cancer? I'll bet your up to date on all required screenings .
Other bone diseases such as Paget's and ostemalacia. Have you for example looked at mayo on the web for each of these conditions.I looked at Paget's , and certainly bone pain is there on the symptom list. One thing mentioned about screening tests was an elevated bone alkaline phosphatase-did your bone specialist do this test? If not, why not request it.Did you see on the forteo instructions, don't take if you have Paget's. That would seem to be reason enough to check bone alkaline phosphotase and any other diagnostics for Paget's.
On the osteomalacia, bone pain esp. on activity was noted. Also bone pain to touch. It seemed like major cause was vitamin d deficiency. I think you said you had high d levels? Also phosphorous loss was noted. Why not have these tests too. It sounds like you have such a good relationship with your drs. that you could get what you wanted.
It seems to me that your severe bone pain has got to be dealt with and the sooner the better! I'll discuss my worries in a spirit of sharing but as I do not have the pain that you have , the worries are far less pressing.
My worries circle somewhat around the same areas as yours. Cancer-but I had a pretty good work up recently. Other bone diseases- I think I had a pretty extensive work up on that too. Hyperpara-which I am being watched for-I want to get the parathyroid scan done soon. I don't want the hypercalcemia to make my bones worse.The drs. seem less concerned about the elevated calcium levels than I am.
My current endo wishes she could get to the bottom of my low bmd. I am now awaiting the endoscopy results to rule out celiac.( The endoscopy was absolutely painless) My endo seems bugged,annoyed, or something like that by my bone loss and wants to find a reason. I am beginning to wonder if my bone loss is due to my hashimoto's autoimmune disorder that caused hypothyroid. I never really noticed any hypo symptoms. As you know it is hyperthyroid where bone loss is seen . But I have read that the two conditions are actually related and you can vacillate between them. I just wonder if that could have done it- I have to talk with the endo about this theory.
Hi Snowflake: Thanks for your concern!! No, I don't have low or high D, just the calcium prob, but since bone pain is related to hyperparathyroid, and my PTH is normal the Drs won't consider this option as a dx. If I knew how much that scan cost, I would consider paying for it myself.
I hope you find out about your thrist problem, that must be very annoying and dangerous for your body! Just curious, but have you ever been checked for Sjogrens? I know someone who has low D, slightly elevated Ca, is taking Forteo, and also has Sjogrens, and she has that terrible thirst problem when she's not taking the med they prescribe for it, it's also an autoimmune disorder. This friend also has the dry eye prob as well, even with the tear duct plugs, which goes along with the extreme thirst since your body loses it's ability to produce certain fluids like tears, saliva, etc. Do you have any probs with dry, burning eyes, or your eyes tear excessively? I know this sounds strange, but with dry eye (which I also have with plugs in each duct) I still have the excessive tearing. You would think that if you have dry eye, and plugs, you wouldn't have excessive tearing, where they water constantly; but it's another one of those lovely mysteries you were referring to with our wonderful bodies. I'm glad you're seeing a hematologist, I was about to suggest it before you mentioned it. My husband and I have gone through many different bleeding and blood count probs, and know what it's like to deal with that too, that's why I may have seemed overly concerned about your wbc count, since it's something that needs immediate attention.
For those of you with hPTH, is the only scan they do to check for a parathyroid adenomas the sestamibi scan, or is there some other scan as well?
Last edited by DesertBloom; 05-17-2007 at 08:15 PM.
Hi Osteo: I have been to the Mayo site so many times, and yes have read all the different things that might apply. I've had all the thyroid blood test you can imagine, even ones that didn't occur to me and they are all normal. I constantly hear I'm a medical conundrum and am sick of hearing that.
I also have some other probs I haven't mentioned that are Factor 8 related (Von Willebrands), but no one can find a link between that an ca.
I've also had every blood test to check for the presence of cancer and all were negative, unless they missed one I'm not aware of.
I would have the parathyroid scan if I could get someone to order it, so far I've had no luck, since 2 of the Drs are convinced that you must have a low or high PTH to justify it to Medicare (my insurance). I would pay for it if they would order it. I have no idea what it would cost but could certainly find out if I could just get an order. I also don't believe they have this scan in my area, but could easily go to LLU for it, since I'm going there anyway. Even though one of my PTH's was 14, they still consider that normal. I also had the BSAP test and it wasn't elevated so they ruled out Paget's prior to Forteo, but since my tests are so strange, I can't completely rely on that one they did over a year ago. I really don't think I have either of these anyway, it was just a case of looking for a needle in a haystack to explain things. I had one elevated D in about 12 test's for it so they explained it away as error. My phosphorous etc is normal and they continue to check D, phosphorous, magnesium etc all of which are normal, except for the one high D3.
70% of my bone pain is to touch, and the rest is from my 7 back surgeries. I can't handle an x-ray lying on the hard table for more than 1 minute without it becoming excruciating and I have to move/get up which really annoys the techs. If I kneel down on a hard floor the same thing happens to my knee caps, and on and on with pain to touch/pressure on ribs, hips, shin bone, ankle, so they can't lump it in with my bad spinal diseases which there is no cure.
I completely understand your concerns, and hope you find the answer. In my case they say there is nothing wrong with my thyroid other than the nodules I'm waiting to have biopsied, but they are "so" small I hate to have that done until it's absolutely necessary, which I guess I'll have to do pretty soon.
Thanks for all your continued support and friendship, it really helps, since I don't talk about these things to many people, they just don't get it, except for my husband, you guys here, and some of the Drs. It seems to me that the minute you mention pain Drs and people run, especially if they think they can't help or understand
Last edited by DesertBloom; 05-17-2007 at 08:52 PM.
DesertBloom Hi again today! I am glad to hear that you have had all those tests and ruled out more or less some of the worries. Let me know how it goes. I'll let you know too if I have any info on the high calcium.
You did mention something else in your post to snowflake that touches on one of my other concerns-Sjogrens. I have very dry eyes , skin and mouth.
I have talked to the endo and it looks like she thinks I need to see a rheumatologist. I don't quite understand that. But, I want to find out about it.
The last time I saw the eye dr. , he made a referral to a specialist about the duct plugs. I haven't done the referral yet. But, you say your eyes tear alot with the plugs. Do you have the temp or permanent plugs and overall is the result an improvement for you??
By the way, what is the BSAP test?
P.S. Don't be afraid to mention pain here. I have no desire to run at the mention of pain . I would like to do anything I could to help you figure out your situation and to be a friend. Take care.
Hi Osteo: Yes I have the temp plugs, which were put in after I had a raging case of tearing, sandy feeling and pain in my eyes. I live in the desert where the wind blows most of the time, then there's the sun, so dry eye is common up here. I had the plugs put in and it really helped. The pain went away and the tearing as well but only temporarily in one eye. I had 4 plugs put in, then several months later my left eye started to tear again, and the eye dr took out one of the plugs (leaving 3). This solved the problem, and I can't explain why, since logically it makes No sense. Now I don't have the tearing, but I use "a lot" of drops. Two types for the dry eye, 2 for glaucoma, and 1-2 for allergies when needed. If you have any more questions on the plugs ask away.
I too have an appt to see a Rheumy, but for the bone pain. I'm not sure why Rheumies treat Sjogrens, but they do, plus arthritis and other bone disorders and osteo.
BSAP is what you mentioned Bone Specific Alkaline Phosphatase test. I guess I better watch my use of Acronyms.
Thanks for the support...
Last edited by DesertBloom; 05-18-2007 at 10:14 AM.
Hi DesertBloom-Ok so I am puzzled when you say you had 4 temp plugs put in and 1 removed. I had no idea they put in more than one. Is it a gradual thing, 1 put in and see how it does , then another if needed and so on? Or, is it that 4 were put in at first? Does the whole process require alot of going back to the eye dr.?
I thought plugs went in and then you wouldn't have to use eyedrops so much for dry eye. I am using refresh plus drops throughout the day, and use a more moisturizing drop celluvisc at night. I was sort of hoping no more drops if you had plugs, so I don't quite understand. I guess you have to keep using drops for dry eye?
Do the plugs bother your eyes in any manner?
If you have the temp plugs in as you do, what does the temp part mean? Do they dissolve? Do you have to replace them every x number of months?
Did you consider another solution than the temp plugs? Permanent plugs?
I think I read something about scarring the tear duct , did your dr. talk to you about that too?
I think I covered the questions for now. Thanks so much for the go ahead to fire away. Much appreciated.
Hi Osteo: With me they put in all 4 at once, into each tear duct, it takes about 5 mins. I've never heard of just putting in 1 or 2, but maybe some people do it that way, or maybe it depends on the severity of damage from dryness. You continue to use Refresh and if you want a rx drop, like Restasis, to keep the eye hydrated. I know that it's not mandatory to put in 4 so maybe they go by your particular situation and complaints. I had a severe infection from letting it go too long, and the pain was really bad, but that susided in a day or two.
When the plugs go in, it hurts a little-pressure feeling, but not enough to be a big deal, they use numbing drops. It takes a day or two until you can't feel them "at all".
Temp plugs just means that they can be taken out. The permanent ones are sutured in, and I didn't want that, since you can't take them out without cutting them out-which they don't usually do unless there's some problem. They are smaller than a Forteo needle, and made out of silicone or plastic, and they are pliable not hard. I had one fall out and I didn't even know it happened.
Mine have lasted (stayed in) since 2003, and they put in another when the one fell out, a month ago. I think they told me they last for as long as they stay in, or unless you need to take one out, and probably everyone is different. They don't dissolve. Since I still have 2 of the originals in, they may last 5 years or more, not sure. You have 2 ducts in each eye, but maybe you won't need both done.
I haven't heard about the scarring, is that with both types? Mine haven't caused any problems except for the one eye tearing.
DesertBloom - Thank you for all the good information. What I read about scarring was , as usual, something I found at the Mayo site. I searched Mayo and dry eye. The scarring was listed as an alternative to plugs. Using cauterizing to scar the tissue of the tear duct and block it that way. Well, I am in agreement with you that temp sounds better than permanent. And to me temp sounds better than scarring. Do you find you use less lubricating drops than before you had the plugs? How do you like restatis?
When I first heard about the duct plugs on a local news show sometime ago , early on in their use ,it was stated that there was a risk of uncontrolled tearing down your cheek. That put me off. Have you had this , or do you know of it being an issue?
It really is time for me to do something about this.
Thanks again. I guess this doesn't relate much to lowering calcium levels. But, I am glad to get some "reliable information " from a "trusted source"!