snowflake11
05-13-2007, 11:21 PM
can anyone answer this mystery???
i just had some blood work done. i am taking forteo and my pth is below normal - it's 10.1. normal is 14-65. my calcium is 9.9.
before i started the forteo pth was 37 and my calcium was 9.5.
now i ask, how can i be taking pth (forteo) and have a lower pth level than when i started?????
my doctor doesn't seem concerned about it. but if i am now hypopara -how can i still have a high normal calcium. i am soooo confused.
i just had some blood work done. i am taking forteo and my pth is below normal - it's 10.1. normal is 14-65. my calcium is 9.9.
before i started the forteo pth was 37 and my calcium was 9.5.
now i ask, how can i be taking pth (forteo) and have a lower pth level than when i started?????
my doctor doesn't seem concerned about it. but if i am now hypopara -how can i still have a high normal calcium. i am soooo confused.
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taape
05-14-2007, 09:44 PM
Snowflake,
I wonder if the Forteo is just not working well in raising and keeping your calcium level stable. Are you consistently using the Forteo everyday at the same time? Are you sure that all of the medication from the pen is going in? I hope you can find out the reason and get it corrected.
I wonder if the Forteo is just not working well in raising and keeping your calcium level stable. Are you consistently using the Forteo everyday at the same time? Are you sure that all of the medication from the pen is going in? I hope you can find out the reason and get it corrected.
snowflake11
05-14-2007, 11:36 PM
hi taape, yes i use the pen everyday at the same time. and it all goes in okay. i've been using it since jan. my calcium level is good - high normal everytime they check it, (once a month), but it's not too high. so i am very confused. thanks for helping me think. i'm surprised that my doctor isn't concerned.
taape
05-15-2007, 12:32 AM
I'm surprised that your doctor isn't concerned either. Are you seeing a specialst? I don't know how much help I was but I do remember that my calcium was checked and it was high normal which my doctor said was due to the Forteo.
snowflake11
05-15-2007, 02:47 PM
thanks. i am going to see another obgyn tomorrow and i'm going to ask him. i'll let you know.
taape
05-15-2007, 08:38 PM
or maybe the lab didn't do the test correctly.
DesertBloom
05-15-2007, 08:49 PM
Hi snowflake: Taape is right, there's always the possibility of a lab error it happens all the time. Is your Dr planning on rerunning the test? I'm assuming you're taking calcium along with the injection?
I have a somewhat similar situation, except in my case, I have slightly elevated ionized ca (5.7) normal is 4.5-5.5 and my PTH is 14, which the Dr considers normal even though it's at the lowest number in that range.
I had so many test to try and figure out why my calcium is elevated and so far no answer. Hopefully they will figure out yours right away. I also went off forteo for a month to make sure it wasn't the forteo causing it, but I chose to stay on it because of my low t-score, and because Actonel didn't work for "me".
When you had your PTH test done was it early in the morning, and did you wait to give yourself the forteo till after the test? Our PTH drops at night, and slowly goes up in the morning, and if you are taking calcium first thing, it can cause the PTH to drop a little, from it's already lowered state.
Keep us posted on what you find out... And good luck:wave:
I have a somewhat similar situation, except in my case, I have slightly elevated ionized ca (5.7) normal is 4.5-5.5 and my PTH is 14, which the Dr considers normal even though it's at the lowest number in that range.
I had so many test to try and figure out why my calcium is elevated and so far no answer. Hopefully they will figure out yours right away. I also went off forteo for a month to make sure it wasn't the forteo causing it, but I chose to stay on it because of my low t-score, and because Actonel didn't work for "me".
When you had your PTH test done was it early in the morning, and did you wait to give yourself the forteo till after the test? Our PTH drops at night, and slowly goes up in the morning, and if you are taking calcium first thing, it can cause the PTH to drop a little, from it's already lowered state.
Keep us posted on what you find out... And good luck:wave:
snowflake11
05-15-2007, 11:14 PM
thanks desert,
my doctor isn't going to rerun the test. in fact, he hasn't even called me to discuss it. i had the test done around 11 AM - yes, maybe it ws due to the morning lowering you suggested. no, i didn't take calcium before the test. I am not taking calcium supplements at all anymore, just eating some yogurt thru the day. my calcium is always 9.something and my nutritionist said i don't need to take more.
also, my vit d level has tested low several times, but still my calcium level is upper normal. i thought with low d you don't absorb calcium. i dunno - i am so confused about everything! maybe I should just ignore it all - my doctors seem to be. maybe i worry too much.
my doctor isn't going to rerun the test. in fact, he hasn't even called me to discuss it. i had the test done around 11 AM - yes, maybe it ws due to the morning lowering you suggested. no, i didn't take calcium before the test. I am not taking calcium supplements at all anymore, just eating some yogurt thru the day. my calcium is always 9.something and my nutritionist said i don't need to take more.
also, my vit d level has tested low several times, but still my calcium level is upper normal. i thought with low d you don't absorb calcium. i dunno - i am so confused about everything! maybe I should just ignore it all - my doctors seem to be. maybe i worry too much.
osteoblast
05-16-2007, 05:11 PM
snowflake- you may want to go search the net using the words -mayo hypoparathyroid. That will get you to a page where you then choose the mayo site. Perhaps reading that information will help you to formulate questions for your dr. or lead you to request more diagnostic work. It was indicated that low production of pth in hypoparathyroid will lead to reduced calcium levels in your bones and blood, and an increase in phosphorous and a decrease in magnesium. In the screening and diagnosis section it indicated blood is tested for pth, calcium, phosphorous, and magnesium That a urine test may be done to see if an excess amount of calcium is being lost. Also when hypoparathyroid is diagnosed, treatment is supplements to normalize calcium and phosphorous. There is much more written in plain english not medicalese. Maybe taking or sending the information to your dr. along with a request for other tests would help get the information you want.There is interesting information in the treatment section about vitamin d and how it interacts with calcium . With your deficiency you may find it interesting ( I have a d deficiency as well).
I expect after you look at the info. , you will say but I don't have low blood calcium levels. That's the rub. There is generally something that doesn't fit , isn't that the way it is!
I too am on forteo. In my case the pth level is now 26 on a 12-65 range(was 35 on a test before starting forteo).And my serum calcium level is generally over past year ( both before and after forteo) high in range and slightly out of range-my supplemental calcium was then cut be a third. It looks like that helped the serum calcium go down a bit on last test. But of course, these numbers will always fluctuate. I am being watched for hypercalcemia and evolving hyperparathyroid. The treatment for hyperparathyroid involves a scalpel -I'd rather the less invasive treatment for hypoparathyroid involving supplements. Oh well.
Let me know what you think after checking out the info.
I expect after you look at the info. , you will say but I don't have low blood calcium levels. That's the rub. There is generally something that doesn't fit , isn't that the way it is!
I too am on forteo. In my case the pth level is now 26 on a 12-65 range(was 35 on a test before starting forteo).And my serum calcium level is generally over past year ( both before and after forteo) high in range and slightly out of range-my supplemental calcium was then cut be a third. It looks like that helped the serum calcium go down a bit on last test. But of course, these numbers will always fluctuate. I am being watched for hypercalcemia and evolving hyperparathyroid. The treatment for hyperparathyroid involves a scalpel -I'd rather the less invasive treatment for hypoparathyroid involving supplements. Oh well.
Let me know what you think after checking out the info.
snowflake11
05-16-2007, 08:53 PM
hi osteo,
i saw the new obgyn today for a 2nd opinion and he has refered me to 2 other doctors - a hematologist and a reproductive endocrinologist. he says he wants them to evaluate things before he can address the osteo issues because he says we need to "back up." i have a low white cell count which he wants to investigate as it could signal other reasons for the osteo such as autoimmune diseases. ????? so basically i got no further ahead here yet and have to go see these other guys first.
meanwhile, i get extremely thirsty after i take calcium (even if its just like 1/2 pill), and i always know that my next urine will be cloudy. just happened now. and i am thirsty as all heck.
my kidney doc isn't too concerned and doesn't seem to want to be involved in this - basically nobody is taking this seriously enough for me. i did read the website you suggested and i'm still all confused. maybe low vit d is causing pseudohyperpara? i doubt i have a tumor. maybe my low para was a morning fluke like taape said. or maybe low mag? maybe maybe maybe..........i dont know how much calcium to take or how much vit d or what to do!!!!!!!! i guess i just have to play it out and go see the 2 new docs and go with the flow. i guess i just won't take any calcium for now because i can't tolerate the thirst. argggg. part of me wants to bag the forteo too and go back to fosamax. or take no meds at all. i worry about the forteo because if my calcium is actually too low (i know the blood numbers look high, this new obgyn said the blood numbers could be upper normal because my bones are leeching it) - i worry that if calcium is actually low and i take forteo that the increased PTH is causing the bones to leech even more.
i'm all mixed up and worried about it all.
i saw the new obgyn today for a 2nd opinion and he has refered me to 2 other doctors - a hematologist and a reproductive endocrinologist. he says he wants them to evaluate things before he can address the osteo issues because he says we need to "back up." i have a low white cell count which he wants to investigate as it could signal other reasons for the osteo such as autoimmune diseases. ????? so basically i got no further ahead here yet and have to go see these other guys first.
meanwhile, i get extremely thirsty after i take calcium (even if its just like 1/2 pill), and i always know that my next urine will be cloudy. just happened now. and i am thirsty as all heck.
my kidney doc isn't too concerned and doesn't seem to want to be involved in this - basically nobody is taking this seriously enough for me. i did read the website you suggested and i'm still all confused. maybe low vit d is causing pseudohyperpara? i doubt i have a tumor. maybe my low para was a morning fluke like taape said. or maybe low mag? maybe maybe maybe..........i dont know how much calcium to take or how much vit d or what to do!!!!!!!! i guess i just have to play it out and go see the 2 new docs and go with the flow. i guess i just won't take any calcium for now because i can't tolerate the thirst. argggg. part of me wants to bag the forteo too and go back to fosamax. or take no meds at all. i worry about the forteo because if my calcium is actually too low (i know the blood numbers look high, this new obgyn said the blood numbers could be upper normal because my bones are leeching it) - i worry that if calcium is actually low and i take forteo that the increased PTH is causing the bones to leech even more.
i'm all mixed up and worried about it all.
DesertBloom
05-16-2007, 09:31 PM
Hi Snowflake: I understand why you are so feed up, but to look on the bright side, if you want to call it that is someone is going to address your elevated white count, which must be done first. Have you had any infections lately, or blood transfusions? As you know one thing that causes elevated white counts are infections, so maybe you had something recently or "have" something you're not aware of. I think this is a good move to find out the cause. You may have to delay some of these other things, but you need to figure out the white count.
Forteo raises your blood calcium level at around the 2-6 hour mark after taking it and then it returns to baseline shortly after the peak. I'm not sure why your PTH would be low, but hopefully they can get to an answer soon. If you are leeching the calcium, most of it should be excreted through your kidneys, and I can't remember if you said your urinary Ca was normal or not. Have you read the pdf on forteo to see what it says about PTH levels and forteo? Here it is if you haven't read it already.
http://www.ccjm.org/pdffiles/DEAL703.PDF#search=%22forteo%20and%20ost eosarcoma%22
Good Luck with all this, I'm sure it will make sense soon!!!:wave:
Forteo raises your blood calcium level at around the 2-6 hour mark after taking it and then it returns to baseline shortly after the peak. I'm not sure why your PTH would be low, but hopefully they can get to an answer soon. If you are leeching the calcium, most of it should be excreted through your kidneys, and I can't remember if you said your urinary Ca was normal or not. Have you read the pdf on forteo to see what it says about PTH levels and forteo? Here it is if you haven't read it already.
http://www.ccjm.org/pdffiles/DEAL703.PDF#search=%22forteo%20and%20ost eosarcoma%22
Good Luck with all this, I'm sure it will make sense soon!!!:wave:
snowflake11
05-16-2007, 11:22 PM
hi desert, thanks for your optimism. i do hope it makes sense sometime (soon!). to correct you - i have a very LOW white cell count, not high. and no, my doctor hasn't done a urine calcium test - he's just not helpful and dismisses me - so, i set out to find a guy who will dig into all this for me - i think the doc i saw this morning will, but like i said, he first wants to cover other areas. so i wait....i just wish someone would address this right now. sigh. you are lucky you have a proactive doctor. i really appreciate you posting here to educate us and share your story. it helps me understand what might be happening - hard to have to play my own doctor. wish i could order my own tests!
DesertBloom
05-16-2007, 11:28 PM
Hi Snowflake: :eek: Sorry about the mistake I made... Hopefully the new Dr will be better and you'll get all the answers you need. Wouldn't be cool if we could order our own tests. In any case a low white count needs to be addressed as well, because infections can cause those as well, so hopefully they'll be able to straighten that out first, because low or high white counts have to be treated, as soon as they are discovered.
Thanks for the compliment, and I hope I "can" help from time to time, if I don't make anymore mistakes:eek:
Hang in there and keep us posted on what you find out. Good Luck...:wave:
Thanks for the compliment, and I hope I "can" help from time to time, if I don't make anymore mistakes:eek:
Hang in there and keep us posted on what you find out. Good Luck...:wave:
snowflake11
05-16-2007, 11:38 PM
hee-hee. yer welcome. it's sincere.
um, i just posted in another thread, but i'll ask you here too - do you understand how i can have a low vit d level and a high normal calcium level? all the websites i read say that without vit d you can't absorb calcium, so then how can mine be 9.7 or 9.9? do you think this means its coming from my bones, but then wouldn't it be in the lower normal range? thanks again oh wise one! ;)
um, i just posted in another thread, but i'll ask you here too - do you understand how i can have a low vit d level and a high normal calcium level? all the websites i read say that without vit d you can't absorb calcium, so then how can mine be 9.7 or 9.9? do you think this means its coming from my bones, but then wouldn't it be in the lower normal range? thanks again oh wise one! ;)
osteoblast
05-17-2007, 01:15 AM
Snowflake- I have vitamin d deficiency ( it's being treated) and mostly in range high- at upper limit serum calcium. My urinary calcium was normal. I have been told to decrease cal supplementation by a third and I don't have recent lab tests back yet to see if this made a difference. I was told this scenario that I have may be evolving hyperpara, and the dr. will watch it.
Did you get your white blood cell count?
Did you get your white blood cell count?
snowflake11
05-17-2007, 03:00 PM
my wbc count was 1.7 and 2.1 when they tested it - normal is 4-11. so mine is very low. i see the hematologist on june 6th. i'm really not too worried, but i'm sure he'll run a bunch more tests. its probably just some mineral deficiency.
but the calcium thing bothers me - do you have excessive thirst? is your urine cloudy alot after you take calcium? the thirst is driving me insane. its not diabetes. i ended up in the hospital last year because i drank too much - they told me i was over hydrated - and get this - i was STILL wildly thirsty! i guess i'll ask the hema. if a low wbc can make you thirsty. but hyperpara can so i sort of suspect something going on there. gosh, who knows? all i do know is that i feel crummy.
but the calcium thing bothers me - do you have excessive thirst? is your urine cloudy alot after you take calcium? the thirst is driving me insane. its not diabetes. i ended up in the hospital last year because i drank too much - they told me i was over hydrated - and get this - i was STILL wildly thirsty! i guess i'll ask the hema. if a low wbc can make you thirsty. but hyperpara can so i sort of suspect something going on there. gosh, who knows? all i do know is that i feel crummy.
osteoblast
05-17-2007, 04:47 PM
Hi Snowflake! I feel for you . Last year in early summer I went through a difficult time and it took months and a number of doctors until the situation was resolved.
Your high calcium and low pth looks puzzling. And, the low wbc count has to be examined. Your excessive thirst is also puzzling and from what you say is not new, having caused a trip to the er for over hydration. Did you talk to the dr. about the excessive thirst??
On my last serum calcium test, it was elevated out of range and the endo said it was probably the forteo, and cut my calcium. I have read that hypercalcemia can cause excessive thirst. Did your excessive thirst pre -date your forteo use? How long have you been on forteo?
You mentioned the dr. said something about autoimmune disorders. I have an autoimmune disorder- Hashimoto's which resulted in hypothyroid. But what I have learned is that autoimmune disorders can occur within a family in different ways- some may have diabetes, Addison's others Graves, maybe lupus, celiac etc. Having one autoimmune disorder puts you at higher risk of another. If you haven't done so already, you should check with your relatives for autoimmune disorders or anything else that might help with your diagnosis.
I hope this doesn't sound silly but --At this time when you are as you say feeling crummy , do whatever you can to support your mind and body in a healthy way while you wait for this situation to be resolved. Take efforts to eat extra healthy, get good sleep , do some daily exercise even if its just easy walking a few miles, give yourself a time out from worry -meditate, take a warm bath and relax, pray , do yoga whatever works for you.
If I could go back a year ago to when I was going through such a hard time , I would have concentrated on taking extra special care with myself while the pieces were being sorted out. And, if I couldn't accomplish this on my own(which I don't think I could then), I would seek a wholistic , naturopathic physician to guide me through while I used conventional medicine to arrive at the diagnosis. To me conventional medicine did not provide the guidance , support needed while all the testing etc. was going on. Perhaps it was just my doctors, but the more I read and talk to people who have gone through medical difficulties , I am thinking that there is a need to combine conventional and complementary/alternative medicine. My insurance would cover naturopathic, but if it didn't I would pay for it myself. I think that if you are going through anxiety while diagnostic measures are being taken, an md would probably prescribe anti-anxiety meds. or sleeping pills and just further burden an ailing body and mind. Other kinder methods of self-care should be tried.
Take good care of yourself. I am hoping the best for you.
Your high calcium and low pth looks puzzling. And, the low wbc count has to be examined. Your excessive thirst is also puzzling and from what you say is not new, having caused a trip to the er for over hydration. Did you talk to the dr. about the excessive thirst??
On my last serum calcium test, it was elevated out of range and the endo said it was probably the forteo, and cut my calcium. I have read that hypercalcemia can cause excessive thirst. Did your excessive thirst pre -date your forteo use? How long have you been on forteo?
You mentioned the dr. said something about autoimmune disorders. I have an autoimmune disorder- Hashimoto's which resulted in hypothyroid. But what I have learned is that autoimmune disorders can occur within a family in different ways- some may have diabetes, Addison's others Graves, maybe lupus, celiac etc. Having one autoimmune disorder puts you at higher risk of another. If you haven't done so already, you should check with your relatives for autoimmune disorders or anything else that might help with your diagnosis.
I hope this doesn't sound silly but --At this time when you are as you say feeling crummy , do whatever you can to support your mind and body in a healthy way while you wait for this situation to be resolved. Take efforts to eat extra healthy, get good sleep , do some daily exercise even if its just easy walking a few miles, give yourself a time out from worry -meditate, take a warm bath and relax, pray , do yoga whatever works for you.
If I could go back a year ago to when I was going through such a hard time , I would have concentrated on taking extra special care with myself while the pieces were being sorted out. And, if I couldn't accomplish this on my own(which I don't think I could then), I would seek a wholistic , naturopathic physician to guide me through while I used conventional medicine to arrive at the diagnosis. To me conventional medicine did not provide the guidance , support needed while all the testing etc. was going on. Perhaps it was just my doctors, but the more I read and talk to people who have gone through medical difficulties , I am thinking that there is a need to combine conventional and complementary/alternative medicine. My insurance would cover naturopathic, but if it didn't I would pay for it myself. I think that if you are going through anxiety while diagnostic measures are being taken, an md would probably prescribe anti-anxiety meds. or sleeping pills and just further burden an ailing body and mind. Other kinder methods of self-care should be tried.
Take good care of yourself. I am hoping the best for you.
snowflake11
05-17-2007, 08:06 PM
you're so supportive - thank you. your kind words mean alot to me.
that's a good q about which came first - the thirst did predate the forteo. see, i was taking DOUBLE fosamax for about 8 years - yeah, one of my old docs put me on the single dose when it first came out. then after my first bone scan, he doubled it and i was just blindly taking double for years and years. UNTIL feb 2006 when i got some chest tightess and my gi told me to stop the fosamax. then 2 months later i started the forteo. in between there is when the extreme thirst started. i was told to stop the forteo when my blood calcium tested too high after the first month on it. so they put me back on fosamax - single dose. UNTIL - more gi probs in dec 2006 and they put me back on the forteo. i've been taking forteo steadily since jan 15th 2007. my calcium in that time has been high normal but never high. (my vit d is low) BUT throughout all this i have been thirsty as a sponge. sometimes it goes away for a few hours but always right back. and my urine is cloudy alot - seems after i take calcium pills which right now i am only taking 300mg - if i take any at all.
nobody seems to know why the thirst - i don't think its forteo related since it started before, but maybe it's due somehow to stopping fosamax. i know fosamax helps quell hyperparat. and reduce blood calcium. maybe i have fosamax withdrawal? but i called the company and they've not heard of any problems. or maybe its kidney? my kidney doctor doesn't think so - but is sitting back watching things. he tells me cloudy urine is not calcium. but i have a kidney stone...the gi doc found it on an ultrasound. i've never had one before. again the kidney guy is ignoring it.
no, autoimmune diseases don't run in my family. sur ehope its not that.
i feel ready to jump, but hearing from you definitely helped me. i will try to focus on good things and take care of myself to support my body healing. that was wonderful inspiration and advice. i will definitely keep posted here when i find out new stuff. thanks so much! :angel:
that's a good q about which came first - the thirst did predate the forteo. see, i was taking DOUBLE fosamax for about 8 years - yeah, one of my old docs put me on the single dose when it first came out. then after my first bone scan, he doubled it and i was just blindly taking double for years and years. UNTIL feb 2006 when i got some chest tightess and my gi told me to stop the fosamax. then 2 months later i started the forteo. in between there is when the extreme thirst started. i was told to stop the forteo when my blood calcium tested too high after the first month on it. so they put me back on fosamax - single dose. UNTIL - more gi probs in dec 2006 and they put me back on the forteo. i've been taking forteo steadily since jan 15th 2007. my calcium in that time has been high normal but never high. (my vit d is low) BUT throughout all this i have been thirsty as a sponge. sometimes it goes away for a few hours but always right back. and my urine is cloudy alot - seems after i take calcium pills which right now i am only taking 300mg - if i take any at all.
nobody seems to know why the thirst - i don't think its forteo related since it started before, but maybe it's due somehow to stopping fosamax. i know fosamax helps quell hyperparat. and reduce blood calcium. maybe i have fosamax withdrawal? but i called the company and they've not heard of any problems. or maybe its kidney? my kidney doctor doesn't think so - but is sitting back watching things. he tells me cloudy urine is not calcium. but i have a kidney stone...the gi doc found it on an ultrasound. i've never had one before. again the kidney guy is ignoring it.
no, autoimmune diseases don't run in my family. sur ehope its not that.
i feel ready to jump, but hearing from you definitely helped me. i will try to focus on good things and take care of myself to support my body healing. that was wonderful inspiration and advice. i will definitely keep posted here when i find out new stuff. thanks so much! :angel:
taape
05-17-2007, 08:58 PM
Snowflake,
Your sure going through alot right now with these medical issues. I hope one of those doctors can figure out what is going on and help you. There was a period of time when I was excessively thirsty and I did not have diabetes either. It was absolutely awful and I had to carry water with me everyplace I went and have water next to my bed at night. I actually went to the ER at the time and they couldn't figure it out either. I kept thinking it was the decongestant I was taking or another antibiotic but there was no reason. It did finally go away. Does your throat and mouth get dry or are you just so thirsty that you have to drink liquid?
You said that your doctor had you on double Fosamax for 8 years. Did you mean that the doctor prescribed double the recommended dosage?? I don't think Fosamax has a low and high dose, just one dosage. That sounds like malpractice. I hope that isn't the cause of your thirst problem. Keep in touch and let us know what you find out.
Your sure going through alot right now with these medical issues. I hope one of those doctors can figure out what is going on and help you. There was a period of time when I was excessively thirsty and I did not have diabetes either. It was absolutely awful and I had to carry water with me everyplace I went and have water next to my bed at night. I actually went to the ER at the time and they couldn't figure it out either. I kept thinking it was the decongestant I was taking or another antibiotic but there was no reason. It did finally go away. Does your throat and mouth get dry or are you just so thirsty that you have to drink liquid?
You said that your doctor had you on double Fosamax for 8 years. Did you mean that the doctor prescribed double the recommended dosage?? I don't think Fosamax has a low and high dose, just one dosage. That sounds like malpractice. I hope that isn't the cause of your thirst problem. Keep in touch and let us know what you find out.
snowflake11
05-17-2007, 11:35 PM
hi, - you had thirst too and it went away??? ah - there's hope!!! thank you. i've been suffering so badly that somedays i cry. no, my mouth is not dry - it just feels like i have to drink. i am not dehydrated. it feels like my sensors are all messed up or something. did you find out what caused yours? how long did it take to go away? this has been about 1 1/2 years now. nobody knows why - maybe its some toxic metal posioning? did you change anything - like move, or stop eating something, or ? brushing my teeth makes me thirsty! drinking water makes me thirsty. i am so desperate that i even suspect flouride poisoning.
yes, the doctor prescribed double the regular dose of fosamax - two once a week pills that i was taking on the same day. before the once a week pill, i was taking two pills each day instead of the normal one pill. sigh - so silly, but back then i was just a blind truster of doctors orders.
yes, the doctor prescribed double the regular dose of fosamax - two once a week pills that i was taking on the same day. before the once a week pill, i was taking two pills each day instead of the normal one pill. sigh - so silly, but back then i was just a blind truster of doctors orders.
montesflus
05-18-2007, 02:26 AM
SNOWFLAKE11 :
Your situation does sound depressing. Confusing, too. I sincerely hope you may soon find some solution. Physical activity, such as walking, is a great stress reducer. Not knowing you personally, but having read some of your posts, it occured to me that all those years of blindly swallowing those Fosamax pills just MAY have done your body a great dis-service. Nor would it surprise me in the least if some of your present problems (even the thirst) - may be connected to the Fosamax consumption. There is a very informative website called ''askapatient'' where you can read many other patients' posts about the various side-effects of Fosamax (and other meds, too). Yes, I know you mentioned that it could be your body reaction to your cessation of the Fosamax. Unfortunately, the side effects of Fosamax CAN remain in your body for 10 years, even AFTER you finish taking them. This has been acknowledged by the manufacturer of Fosamax, too.
Of course, I could be completely wrong, but you were on Fosamax for many years. Check out the site I mentioned above, it just might give you some further insight into your situation.
Hang in there .....:p
Your situation does sound depressing. Confusing, too. I sincerely hope you may soon find some solution. Physical activity, such as walking, is a great stress reducer. Not knowing you personally, but having read some of your posts, it occured to me that all those years of blindly swallowing those Fosamax pills just MAY have done your body a great dis-service. Nor would it surprise me in the least if some of your present problems (even the thirst) - may be connected to the Fosamax consumption. There is a very informative website called ''askapatient'' where you can read many other patients' posts about the various side-effects of Fosamax (and other meds, too). Yes, I know you mentioned that it could be your body reaction to your cessation of the Fosamax. Unfortunately, the side effects of Fosamax CAN remain in your body for 10 years, even AFTER you finish taking them. This has been acknowledged by the manufacturer of Fosamax, too.
Of course, I could be completely wrong, but you were on Fosamax for many years. Check out the site I mentioned above, it just might give you some further insight into your situation.
Hang in there .....:p
snowflake11
05-18-2007, 01:13 PM
hi monte, yes i know about that ask a patient site and i wish i'd read it before taking all that fosamax. i seemed to be tolerating it just fine though. if it did cause something like this thirst then 10 years is a looong time - wonder if that's 20 yrs for a double dose. sigh. oh well, today is a new day and another opportunity for healing - i am taking osteo's wonderful advice of looking for ways to be kind to myself while the search goes on for answers.
osteoblast
05-18-2007, 03:00 PM
Snowflake- Good Morning! As you have said today is a new day and another opportunity for us to do some healing. I have a note on my fridge that says Think Healing as a reminder. Also I have a chart for each day with columns for the healing things I need to do- walking, tai chi, weight lifting , meditation , the one -leg standing ( thanks to PikaB), and my forteo shot. The forteo shot is of course the absolute must do. Depending on the weather and how my body feels I do as much as I can , and then put a check mark in the column. Somehow the chart sort of pulls me along. I am always open to other ways to integrate good habits and thoughts into my day- if you or others have ways that have worked for you please share.
I should add that when I" think healing "it's actually about way more than my autoimmune disorder or the osteoporosis. None of us are going to get out of here alive , and probably the vast majority will experience some if not a great deal of suffering. So to think I could exempt myself from that would be unreal. But, I try ( not always easy) to be kind to myself and others while going through this experience. I think healing for myself and for all others, animals included, earth included, all included. Dr. Bernie Siegel in his books talks alot about this- you may not be able to heal your disease - but you may be able to heal yourself. I guess you could say I am exploring what that might mean.
As time goes by you will learn more about your situation from the drs. and the diagnostics to be done. And, hopefully as the time passes you will take many opportunities for healing. Take care Snowflake.
I should add that when I" think healing "it's actually about way more than my autoimmune disorder or the osteoporosis. None of us are going to get out of here alive , and probably the vast majority will experience some if not a great deal of suffering. So to think I could exempt myself from that would be unreal. But, I try ( not always easy) to be kind to myself and others while going through this experience. I think healing for myself and for all others, animals included, earth included, all included. Dr. Bernie Siegel in his books talks alot about this- you may not be able to heal your disease - but you may be able to heal yourself. I guess you could say I am exploring what that might mean.
As time goes by you will learn more about your situation from the drs. and the diagnostics to be done. And, hopefully as the time passes you will take many opportunities for healing. Take care Snowflake.
snowflake11
05-18-2007, 06:09 PM
oooh, osteo, i wish we could be friends in "real" life - you sound like someone whom i can really relate to. I saw Bernie Siegel in person once and he was definitely fertilzer for the psyche. I do beleive that this lifetime gives each of us challenges to best facilitate our soul's ultimate development. therefore, I strive to find the healing lesson in each day and keep sight of the big picture. i know that all this seems like a mountain from up close, but that when i die, it will appear nothing but a small wrinkle. I really like your idea of the refrig chart. i'm going to start a wellness chart like that. thanks for the idea. I have a gratitude journal that i keep. each day i bless all the doctors who are trying to help me and pray for their guidance. also, every day i make time to go outside and face the sun (or the rain clouds). i close my eyes and use my senses to connect to the rest of creation that i share the planet with. it reminds me that i belong and that i am neither better nor inferior to any other life form. then i write at least one thing that i felt or learned from each day's outdoor moment in my gratitude journal.
Sincere thanks for the way you inspire me with your own journey - last night, i added you (actually all you gals here) to my journal !!! :p
Sincere thanks for the way you inspire me with your own journey - last night, i added you (actually all you gals here) to my journal !!! :p
osteoblast
05-18-2007, 09:10 PM
Snowflake-you are really a sweet person! Thank you for sharing your outdoor moment, that is really beautiful. I have done something like that from time to time, when I look out in the backyard and see the wind softly moving through the trees. I feel drawnto go out and soak it in. Your idea of a daily moment out of doors, connecting to the universe sounds healing and powerful. And , your following it up with an entry in your gratitude journal regarding what you learned or felt during the outdoor moment sounds perfect. I am going to add this to my healing list- the outdoor moment. Thank you. I too am thankful to so many wonderful people on this board that take the time to share. Somehow it gives me hope. Take care.
snowflake11
05-18-2007, 11:35 PM
cool! i'll think of you when i face the sun tomorrow.
taape
05-19-2007, 12:25 AM
I had the thirst thing for about a month and then it went away. I just felt desperately dry and had to drink and was thirsty at the same- weird. I don't know if it was from stress or what. The only other thing I know about excessive thirst is a syndrome called polydipsea where people crave liquids. They drink too much liquid that messes up their electrolytes because their system becomes unbalanced and it can be serious if they over drink. There was recently a radio station that had a water drinking contest. One contestant drank so heavily all at once and it killed her. This doesn't really sound like what you describe. I hope you can get answers and a reverse to this very soon.
snowflake11
05-19-2007, 11:30 PM
thanks taape. i did actually drink too much last year when this first started. i ended up in the ER, hyponatremic and had to have salt tabs for awhile. now i know better and limit my intake. that proved that no matter how much i drink i am still thirsty - it's not a true thirst. my mouth isn't dry, it's like just an extreme need to drink - i can't explain it, but sometimes i can't even talk i am so thirsty. and i cry alot because its so uncomfortable. i am wondering, could it be that my bones are shedding whatever fosamax reside into my bloodstream? lets say fosamax laid down bone - now if i'm not taking it, but my bones are leeching calcium - could they be leeching fosamax-ladened calcium? oh i don't know. i've scoured the internet. i'm also wondering if its something simple like too low potassium (that has all my symptoms associated with it), but my potassium always tests fine. is there an ionized potassium that goes low? i see the hematolgist on june 6th - do you think he'd be able to tell that? he is a blood doctor so i'd think he might know stuff besides just anemia and a low white cell count.
taape
05-20-2007, 02:32 AM
I wonder if there's a test to see what your Fosamax level is in your blood. Not your bone cycle but just too see if you still have Fosamax in your blood since you were given double doses. You might ask about that.
snowflake11
05-20-2007, 12:31 PM
yes, i'll ask. but i think i'm a really rare case becausei doubt many other people have been prescribed a double dose for as long as i was. i don't even know if that's the problem. this morning i am not so thirsty - yesterday was gosh darn torture. i do get periods of relief for a few hours now and then so its probably got to do more with blood chemistry somehow. i'm so desperate for answers that i'd actually like to be hospitalized for a day so they can figure it out. just study me intensively for a day. i think they could find the problem. i seem to be getting nowhere outpatient - its been 1 1/2 years!!!!! but thanks so much for your support and caring - i'll update you all as things progress.
osteoblast
05-21-2007, 02:46 PM
Hi Snowflake-I hope you are taking good care of yourself. I hear your worries though and I can relate. As I said, about 8 months ago I was in a really bad diagnostic situation. It does sound very tough for you and your thirst doesn't seem right at all! Can you get your local dr. to do all the diagnostics that you want now? If I remember correctly, you are waiting to see a specialist or specialists is that right?
I don't know if you have insurance or if your insurance would cover something like what I did but-here's what I did. I went to Mayo clinic , you can just call yourself and make an appointment or your dr. can refer you. In my experience , you are assigned a specialist who is most closely related to your presenting issue. ( Mayo was able to schedule my appt. within two weeks) You see that specialist early mon or tues . I would advise getting a Monday am appt. The specialist orders lab tests and schedules you for any imaging diagnostics as well as seeing any other specialists as needed. Within 24 hours the lab results were back with the dr. and I was contacted to have additional lab tests based on results of the first. At the end of the week, mostly filled with appts. and lab tests, I certainly felt that I knew alot more about my situation .(Just to clarify , all this was done out patient at Mayo.) It would have taken months and months to have done this where I live- even though I live near a major metro area. It takes several weeks to see a specialist , then lab results can take a week or two. Then if new labs ordered , well it seems to go on and on. I am concerned about your thirst though and wonder if it's not time to really get on this in a big way. I am not saying to drive yourself crazy with it - try to take good care of yourself and find a way to get this dealt with sooner than later.
I bet there are other places, maybe alot closer to you than Mayo . I am sure
you must know the prominent med. centers. I think Cleveland Clinic may have a program like Mayo's. Surely there must be a place in New York or Boston. Short of checking yourself in at a hospital, I would think a very condensed , organized , highly efficient out patient scenario would work for you. What do you think? I hate to think that your damaging your body by this waiting .
Here's another idea. Cleveland Clinic has a remote second opinion program. I don't know if you can get this happening yourself or if your dr. has to do it. Check their website, if interested. Perhaps a specialist could look over your records and prescribe a battery of tests to get your case resolved or at least moving along in the right direction. Again, maybe a prominent med center closer to you also has such a program. Let us know how it goes.
I don't know if you have insurance or if your insurance would cover something like what I did but-here's what I did. I went to Mayo clinic , you can just call yourself and make an appointment or your dr. can refer you. In my experience , you are assigned a specialist who is most closely related to your presenting issue. ( Mayo was able to schedule my appt. within two weeks) You see that specialist early mon or tues . I would advise getting a Monday am appt. The specialist orders lab tests and schedules you for any imaging diagnostics as well as seeing any other specialists as needed. Within 24 hours the lab results were back with the dr. and I was contacted to have additional lab tests based on results of the first. At the end of the week, mostly filled with appts. and lab tests, I certainly felt that I knew alot more about my situation .(Just to clarify , all this was done out patient at Mayo.) It would have taken months and months to have done this where I live- even though I live near a major metro area. It takes several weeks to see a specialist , then lab results can take a week or two. Then if new labs ordered , well it seems to go on and on. I am concerned about your thirst though and wonder if it's not time to really get on this in a big way. I am not saying to drive yourself crazy with it - try to take good care of yourself and find a way to get this dealt with sooner than later.
I bet there are other places, maybe alot closer to you than Mayo . I am sure
you must know the prominent med. centers. I think Cleveland Clinic may have a program like Mayo's. Surely there must be a place in New York or Boston. Short of checking yourself in at a hospital, I would think a very condensed , organized , highly efficient out patient scenario would work for you. What do you think? I hate to think that your damaging your body by this waiting .
Here's another idea. Cleveland Clinic has a remote second opinion program. I don't know if you can get this happening yourself or if your dr. has to do it. Check their website, if interested. Perhaps a specialist could look over your records and prescribe a battery of tests to get your case resolved or at least moving along in the right direction. Again, maybe a prominent med center closer to you also has such a program. Let us know how it goes.
snowflake11
05-21-2007, 08:55 PM
hi osteo, how timely that you would write me all that. thank you so much. just yesterday i was thinking about going to the mayo clinic if these next two doctors can't find the problem. Then here today you write me all these details. wow - the universe at work! i will check into some of the places you mentioned and find out about the logistics. i am so desperate - i spent most of the weekend crying because i was so thirsty and then my doctor calls me today and tells me that my sodium level is too low and tells me to cut back on my fluids. i lost it and sobbed big time after i hung up. i have been trying to hold it all together, but really lost it today. thanks for your advice - i agree - i really do need a whole team of specialists who won't just say gosh, we don't know, and refer me to another kind of doctor. i've been bounced around like a yo-yo and spent 1000's upon 1000's of dollars trying to find an answer. i'm sure i'll have q's for you so stick close. i can't think about this anymore right now though. i'll get back with ya later. just wanted to tell you big thanks.