Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Oh, I forgot. " Fine " ...coming from the surgeon god who proclaimed that I was " fine " and discharged with a calcium level so low that even the nurses at the hospital knew I'd be back in the next day (make that 4 days) for IV calcium So, just what does " fine " mean today?? Sorry, I'm just really angry. Sandy " I'm fine " > Just returned from my appt. with the surgeon to look at the 2 > worrisome lymph nodes and discuss my low calcium 7 months post op. > > Not concerned at all, " You're fine " . Parathyroid tests have dropped > from 37 to 22, below normal calcium tho taking 1500 mg. calcium and > doing everything I can - still feel it drop and have symptoms....Not > concerned - " You're fine " . I asked if my PTH levels would be higher > with lower calcium levels if they were working probably and I got > caught, " You've been reading on the internet, haven't you? " (finger > wagging) Said I had the finest endo in the state and not to " doctor > shop " . Just keep popping that chalk - parathyroids take time. I > asked if there was a dangerous limit to calcium and he laughed. > > TG tests came back good, so not concerned about lymph nodes. First I > was told it was a tonsil (had them removed at age 6), then a 1.5 cm > lymph node, now maybe part of a bone. I asked if there were ever > situations of a local recurrence without a high TG test while TSH > suppessed and he said no. > > He asked me if I felt better now, and I said, " I'm FINE - isn't that > the correct answer??? " So, I need to stay away from any medical info > I get from the internet and not worry my little head about a thing. > From now on, " I'm fine " . I guess there's no need for a yearly scan > since I'm so darn fine! > > Thanks to all for your the help, but I'm fine now. And I'm going > brunette tomorrow. > > Sandy > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Oh, I forgot. " Fine " ...coming from the surgeon god who proclaimed that I was " fine " and discharged with a calcium level so low that even the nurses at the hospital knew I'd be back in the next day (make that 4 days) for IV calcium So, just what does " fine " mean today?? Sorry, I'm just really angry. Sandy " I'm fine " > Just returned from my appt. with the surgeon to look at the 2 > worrisome lymph nodes and discuss my low calcium 7 months post op. > > Not concerned at all, " You're fine " . Parathyroid tests have dropped > from 37 to 22, below normal calcium tho taking 1500 mg. calcium and > doing everything I can - still feel it drop and have symptoms....Not > concerned - " You're fine " . I asked if my PTH levels would be higher > with lower calcium levels if they were working probably and I got > caught, " You've been reading on the internet, haven't you? " (finger > wagging) Said I had the finest endo in the state and not to " doctor > shop " . Just keep popping that chalk - parathyroids take time. I > asked if there was a dangerous limit to calcium and he laughed. > > TG tests came back good, so not concerned about lymph nodes. First I > was told it was a tonsil (had them removed at age 6), then a 1.5 cm > lymph node, now maybe part of a bone. I asked if there were ever > situations of a local recurrence without a high TG test while TSH > suppessed and he said no. > > He asked me if I felt better now, and I said, " I'm FINE - isn't that > the correct answer??? " So, I need to stay away from any medical info > I get from the internet and not worry my little head about a thing. > From now on, " I'm fine " . I guess there's no need for a yearly scan > since I'm so darn fine! > > Thanks to all for your the help, but I'm fine now. And I'm going > brunette tomorrow. > > Sandy > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Sandy: And you should be angry.. there is no room in this day and age for egotistic, dismissing physicians... this guy works for you, you pay his salary, and you deserve better than this sort of treatment... if its at all possible have someone other than this surgeon coordinate your care and run your scans and testing going forward.... this guy is not working in your best interests... a good doc will help sort through things you've learned on the internet to clarify how the levels work and will work to inform you about your conditions, not dismiss you.... barb --- Sandy Glenn wrote: > Oh, I forgot. " Fine " ...coming from the surgeon god > who proclaimed that I > was " fine " and discharged with a calcium level so > low that even the nurses > at the hospital knew I'd be back in the next day > (make that 4 days) for IV > calcium So, just what does " fine " mean today?? > > Sorry, I'm just really angry. > > Sandy > " I'm fine " > > > > Just returned from my appt. with the surgeon to > look at the 2 > > worrisome lymph nodes and discuss my low calcium 7 > months post op. > > > > Not concerned at all, " You're fine " . Parathyroid > tests have dropped > > from 37 to 22, below normal calcium tho taking > 1500 mg. calcium and > > doing everything I can - still feel it drop and > have symptoms....Not > > concerned - " You're fine " . I asked if my PTH > levels would be higher > > with lower calcium levels if they were working > probably and I got > > caught, " You've been reading on the internet, > haven't you? " (finger > > wagging) Said I had the finest endo in the state > and not to " doctor > > shop " . Just keep popping that chalk - parathyroids > take time. I > > asked if there was a dangerous limit to calcium > and he laughed. > > > > TG tests came back good, so not concerned about > lymph nodes. First I > > was told it was a tonsil (had them removed at age > 6), then a 1.5 cm > > lymph node, now maybe part of a bone. I asked if > there were ever > > situations of a local recurrence without a high TG > test while TSH > > suppessed and he said no. > > > > He asked me if I felt better now, and I said, " I'm > FINE - isn't that > > the correct answer??? " So, I need to stay away > from any medical info > > I get from the internet and not worry my little > head about a thing. > > From now on, " I'm fine " . I guess there's no need > for a yearly scan > > since I'm so darn fine! > > > > Thanks to all for your the help, but I'm fine now. > And I'm going > > brunette tomorrow. > > > > Sandy > > > > > > For more information regarding thyroid cancer > visit www.thyca.org. If you > do not wish to belong to this group, you may > UNSUBSCRIBE by sending a blank > email to thyca-unsubscribe > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Sandy: And you should be angry.. there is no room in this day and age for egotistic, dismissing physicians... this guy works for you, you pay his salary, and you deserve better than this sort of treatment... if its at all possible have someone other than this surgeon coordinate your care and run your scans and testing going forward.... this guy is not working in your best interests... a good doc will help sort through things you've learned on the internet to clarify how the levels work and will work to inform you about your conditions, not dismiss you.... barb --- Sandy Glenn wrote: > Oh, I forgot. " Fine " ...coming from the surgeon god > who proclaimed that I > was " fine " and discharged with a calcium level so > low that even the nurses > at the hospital knew I'd be back in the next day > (make that 4 days) for IV > calcium So, just what does " fine " mean today?? > > Sorry, I'm just really angry. > > Sandy > " I'm fine " > > > > Just returned from my appt. with the surgeon to > look at the 2 > > worrisome lymph nodes and discuss my low calcium 7 > months post op. > > > > Not concerned at all, " You're fine " . Parathyroid > tests have dropped > > from 37 to 22, below normal calcium tho taking > 1500 mg. calcium and > > doing everything I can - still feel it drop and > have symptoms....Not > > concerned - " You're fine " . I asked if my PTH > levels would be higher > > with lower calcium levels if they were working > probably and I got > > caught, " You've been reading on the internet, > haven't you? " (finger > > wagging) Said I had the finest endo in the state > and not to " doctor > > shop " . Just keep popping that chalk - parathyroids > take time. I > > asked if there was a dangerous limit to calcium > and he laughed. > > > > TG tests came back good, so not concerned about > lymph nodes. First I > > was told it was a tonsil (had them removed at age > 6), then a 1.5 cm > > lymph node, now maybe part of a bone. I asked if > there were ever > > situations of a local recurrence without a high TG > test while TSH > > suppessed and he said no. > > > > He asked me if I felt better now, and I said, " I'm > FINE - isn't that > > the correct answer??? " So, I need to stay away > from any medical info > > I get from the internet and not worry my little > head about a thing. > > From now on, " I'm fine " . I guess there's no need > for a yearly scan > > since I'm so darn fine! > > > > Thanks to all for your the help, but I'm fine now. > And I'm going > > brunette tomorrow. > > > > Sandy > > > > > > For more information regarding thyroid cancer > visit www.thyca.org. If you > do not wish to belong to this group, you may > UNSUBSCRIBE by sending a blank > email to thyca-unsubscribe > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 > > Oh, I forgot. " Fine " ...coming from the surgeon god > > who proclaimed that I > > was " fine " and discharged with a calcium level so > > low that even the nurses > > at the hospital knew I'd be back in the next day > > (make that 4 days) for IV > > calcium So, just what does " fine " mean today?? > > > > Sorry, I'm just really angry. > > > > Sandy > > " I'm fine " > > > > > > > Just returned from my appt. with the surgeon to > > look at the 2 > > > worrisome lymph nodes and discuss my low calcium 7 > > months post op. > > > > > > Not concerned at all, " You're fine " . Parathyroid > > tests have dropped > > > from 37 to 22, below normal calcium tho taking > > 1500 mg. calcium and > > > doing everything I can - still feel it drop and > > have symptoms....Not > > > concerned - " You're fine " . I asked if my PTH > > levels would be higher > > > with lower calcium levels if they were working > > probably and I got > > > caught, " You've been reading on the internet, > > haven't you? " (finger > > > wagging) Said I had the finest endo in the state > > and not to " doctor > > > shop " . Just keep popping that chalk - parathyroids > > take time. I > > > asked if there was a dangerous limit to calcium > > and he laughed. > > > > > > TG tests came back good, so not concerned about > > lymph nodes. First I > > > was told it was a tonsil (had them removed at age > > 6), then a 1.5 cm > > > lymph node, now maybe part of a bone. I asked if > > there were ever > > > situations of a local recurrence without a high TG > > test while TSH > > > suppessed and he said no. > > > > > > He asked me if I felt better now, and I said, " I'm > > FINE - isn't that > > > the correct answer??? " So, I need to stay away > > from any medical info > > > I get from the internet and not worry my little > > head about a thing. > > > From now on, " I'm fine " . I guess there's no need > > for a yearly scan > > > since I'm so darn fine! > > > > > > Thanks to all for your the help, but I'm fine now. > > And I'm going > > > brunette tomorrow. > > > > > > Sandy > > > > > > > > > For more information regarding thyroid cancer > > visit www.thyca.org. If you > > do not wish to belong to this group, you may > > UNSUBSCRIBE by sending a blank > > email to thyca-unsubscribe@y... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Sandy, You have every right to feel angry & concerned. What do you want to do about the situation? Do you still have the clinical indicators of hypoparathyroidism: - low serum calcium (my lab normal range is - 8.6-10.5 mg/dl) - elevated phosphorus - low parathyroid hormone (my lab normal is 10-55 pg/ml) Is your serum calcium level in the normal range when you take the 1500 mg daily calcium supplement? The recommended daily allowance of calcium for women is between 1200-1500 mg/day - so your level of supplement doesn't seem very high - especially if you have reduced parathyroid function. If your calcium serum calcium level is still 'low' then which of your doctors monitors your condition and makes recommendations on your calcium supplement dose changes? When is your next blood test? There have been postings about having a thyca recurrence without a corresponding rise in TG - most often found in the neck. I didn't save the posts - but perhaps someone else could re-post the msgs from our list doctors. In the short-term it is important to make sure that your serum calcium level is in the normal range - many body functions require calcium. Over the long-term...are you confident in this doctor's abilities to monitor your thyca status & your health? . dx pap-Hurthle cell variant, tt 9/99, RAI 100 mCi 12/99, .2 Eltroxin, 2.5 g calcium w vit D daily, TSH .005, TG undetectable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Sandy, You have every right to feel angry & concerned. What do you want to do about the situation? Do you still have the clinical indicators of hypoparathyroidism: - low serum calcium (my lab normal range is - 8.6-10.5 mg/dl) - elevated phosphorus - low parathyroid hormone (my lab normal is 10-55 pg/ml) Is your serum calcium level in the normal range when you take the 1500 mg daily calcium supplement? The recommended daily allowance of calcium for women is between 1200-1500 mg/day - so your level of supplement doesn't seem very high - especially if you have reduced parathyroid function. If your calcium serum calcium level is still 'low' then which of your doctors monitors your condition and makes recommendations on your calcium supplement dose changes? When is your next blood test? There have been postings about having a thyca recurrence without a corresponding rise in TG - most often found in the neck. I didn't save the posts - but perhaps someone else could re-post the msgs from our list doctors. In the short-term it is important to make sure that your serum calcium level is in the normal range - many body functions require calcium. Over the long-term...are you confident in this doctor's abilities to monitor your thyca status & your health? . dx pap-Hurthle cell variant, tt 9/99, RAI 100 mCi 12/99, .2 Eltroxin, 2.5 g calcium w vit D daily, TSH .005, TG undetectable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Here's a post I had saved about neck mets not causing a rise in tg... Subject: Repost from Dr. Rolla re: TG Date: Fri, 9 Mar 2001 08:12:49 EST From: Jamsmelen@... Reply-To: thyca@... To: Thyca@... I don't remember who wanted this but here's a repost from the doc about TG.... Abby from Baldwin,NY ****************************************************************************** **** Unfortunately there are some tumors that may grow and stop producing Thyroglobulin. For reasons that we cannot explain very well local growth in the neck tends to be associated with less thyroglobulin increase in the blood. That's why you need a careful palpation of the neck and at times ultrasound studies. ################################################## ARTURO R. ROLLA, MD Boston, MA Phone arolla@... arolla@... arolla@... arolla@... ################################################## Sharkey wrote: > > Sandy, > > You have every right to feel angry & concerned. What do you want to > do about the situation? > > Do you still have the clinical indicators of hypoparathyroidism: > > - low serum calcium (my lab normal range is - 8.6-10.5 mg/dl) > - elevated phosphorus > - low parathyroid hormone (my lab normal is 10-55 pg/ml) > > Is your serum calcium level in the normal range when you take the > 1500 mg daily calcium supplement? The recommended daily allowance > of calcium for women is between 1200-1500 mg/day - so your level > of supplement doesn't seem very high - especially if you have > reduced parathyroid function. > > If your calcium serum calcium level is still 'low' then which of your > doctors monitors your condition and makes recommendations on your > calcium supplement dose changes? When is your next blood test? > > There have been postings about having a thyca recurrence without > a corresponding rise in TG - most often found in the neck. I didn't > save the posts - but perhaps someone else could re-post the msgs from > our list doctors. > > In the short-term it is important to make sure that your serum > calcium level is in the normal range - many body functions require > calcium. Over the long-term...are you confident in this doctor's > abilities to monitor your thyca status & your health? > > . > > dx pap-Hurthle cell variant, tt 9/99, RAI 100 mCi 12/99, .2 Eltroxin, > 2.5 g calcium w vit D daily, TSH .005, TG undetectable. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Right now I feel like I should go to my room and not come out until I've learned my lesson about how to be a good patient. In essence, they'll let me know when I'm not feeling right, thank you! But, yes my calcium hovers below normal and I'm doing all I can to " make it's in normal range " . My parathyroid function is low (21), but not critically (15 pts. lower than when I saw him last and went off of Rocaltrol). If I understand correctly, a low serum calcium test should yield a higher PTH result, so this doesn't look right. (sort of like the pth answering the demand for more calcium in the way tsh rises in answer to a low functioning thyroid) My phosphorous is in range, but on the high normal side. Surgeon feels that PTh is in range so everything is fine. I am going to up my calcium dosage by another 500 mg. in the form of Oscal with D. This is the first time in my entire life I have ever self-medicated besides an occasional nuprin, etc. That's how much I " respect " medication. Calcium must be in range sometimes, because there are days I don't feel symptomatic. Other times I can definitely feel when it's low. Sort of transient. I guess maybe I'm borderline? not quite bad enough to treat, but not quite working sufficiently yet? Short term/long term - no, I don't feel confident in my doctors treatment and I don't know what I'm going to do. Thanks for caring and for the info. Sandy Re: " I'm fine " > > > Sandy, > > You have every right to feel angry & concerned. What do you want to > do about the situation? > > Do you still have the clinical indicators of hypoparathyroidism: > > - low serum calcium (my lab normal range is - 8.6-10.5 mg/dl) > - elevated phosphorus > - low parathyroid hormone (my lab normal is 10-55 pg/ml) > > Is your serum calcium level in the normal range when you take the > 1500 mg daily calcium supplement? The recommended daily allowance > of calcium for women is between 1200-1500 mg/day - so your level > of supplement doesn't seem very high - especially if you have > reduced parathyroid function. > > If your calcium serum calcium level is still 'low' then which of your > doctors monitors your condition and makes recommendations on your > calcium supplement dose changes? When is your next blood test? > > There have been postings about having a thyca recurrence without > a corresponding rise in TG - most often found in the neck. I didn't > save the posts - but perhaps someone else could re-post the msgs from > our list doctors. > > In the short-term it is important to make sure that your serum > calcium level is in the normal range - many body functions require > calcium. Over the long-term...are you confident in this doctor's > abilities to monitor your thyca status & your health? > > . > > dx pap-Hurthle cell variant, tt 9/99, RAI 100 mCi 12/99, .2 Eltroxin, > 2.5 g calcium w vit D daily, TSH .005, TG undetectable. > > > > > > > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Sandy, Do you have an insurance where you have some kind of choice in your doctors?? You need to think about whether your needs as a patient are being met.. if they are not, you need to find a doctor who doesn't mind patients who are pro-active toward their treatment.. if I had never learned what I have from this list, questioned anything, or had never changed doctors, I would have never known mine was iodine resistant. I even saw one doctor who told me " its just part of your esophogus " - she was talking about the spot that I later found out was actually part of the recurrance. ( the same doctor thought an elevated Tg didn't indicate anything)Needless to say, she only lasted one visit. Remember with thyca, you DON " T have to dance with the one who brung ya. Bekki in TX; tt & rai'89; rai 7/00; mid- neck dissection 2/01; 5/01-finished EBR > > He asked me if I felt better now, and I said, " I'm FINE - isn't that > the correct answer??? " So, I need to stay away from any medical info > I get from the internet and not worry my little head about a thing. > From now on, " I'm fine " . I guess there's no need for a yearly scan > since I'm so darn fine! > > > Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 I meant to say you " need to think about finding a doctor, " > Sandy, Do you have an insurance where you have some kind of choice > in your doctors?? You need to think about whether your needs as a > patient are being met.. if they are not, you need to find a doctor > who doesn't mind patients who are pro-active toward their treatment.. > if I had never learned what I have from this list, questioned > anything, or had never changed doctors, I would have never known mine > was iodine resistant. I even saw one doctor who told me " its just > part of your esophogus " - she was talking about the spot that I later > found out was actually part of the recurrance. ( the same doctor > thought an elevated Tg didn't indicate anything)Needless to say, she > only lasted one visit. Remember with thyca, you DON " T have to dance > with the one who brung ya. Bekki in TX; tt & rai'89; rai 7/00; mid- > neck dissection > 2/01; 5/01-finished EBR > > > > He asked me if I felt better now, and I said, " I'm FINE - isn't > that > > the correct answer??? " So, I need to stay away from any medical > info > > I get from the internet and not worry my little head about a > thing. > > From now on, " I'm fine " . I guess there's no need for a yearly scan > > since I'm so darn fine! > > > > > > > Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Thanks Alyssa! It a strange position to be in - to have this information and be afraid to refer to it! > Repost from Dr. Rolla re: TG > Date: > Fri, 9 Mar 2001 08:12:49 EST > From: > Jamsmelen@... > Reply-To: > thyca@... > To: > Thyca@... > > > > > I don't remember who wanted this but here's a repost from the doc about > TG.... > > Abby from Baldwin,NY > **************************************************************************** ** > > **** > Unfortunately there are some tumors that may grow and stop producing > Thyroglobulin. > > For reasons that we cannot explain very well local growth in the neck > tends > to be associated with less thyroglobulin increase in the blood. That's > why > you need a careful palpation of the neck and at times ultrasound > studies. > > > > ################################################## > ARTURO R. ROLLA, MD Boston, MA Phone > arolla@... arolla@... > arolla@... arolla@... > ################################################## > > Sharkey wrote: > > > > Sandy, > > > > You have every right to feel angry & concerned. What do you want to > > do about the situation? > > > > Do you still have the clinical indicators of hypoparathyroidism: > > > > - low serum calcium (my lab normal range is - 8.6-10.5 mg/dl) > > - elevated phosphorus > > - low parathyroid hormone (my lab normal is 10-55 pg/ml) > > > > Is your serum calcium level in the normal range when you take the > > 1500 mg daily calcium supplement? The recommended daily allowance > > of calcium for women is between 1200-1500 mg/day - so your level > > of supplement doesn't seem very high - especially if you have > > reduced parathyroid function. > > > > If your calcium serum calcium level is still 'low' then which of your > > doctors monitors your condition and makes recommendations on your > > calcium supplement dose changes? When is your next blood test? > > > > There have been postings about having a thyca recurrence without > > a corresponding rise in TG - most often found in the neck. I didn't > > save the posts - but perhaps someone else could re-post the msgs from > > our list doctors. > > > > In the short-term it is important to make sure that your serum > > calcium level is in the normal range - many body functions require > > calcium. Over the long-term...are you confident in this doctor's > > abilities to monitor your thyca status & your health? > > > > . > > > > dx pap-Hurthle cell variant, tt 9/99, RAI 100 mCi 12/99, .2 Eltroxin, > > 2.5 g calcium w vit D daily, TSH .005, TG undetectable. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 " Don't have to dance with the one that brung ya " !!!! I needed that laugh! And right before I hit the sack - thanks so much! that was great, Sandy Re: " I'm fine " > Sandy, Do you have an insurance where you have some kind of choice > in your doctors?? You need to think about whether your needs as a > patient are being met.. if they are not, you need to find a doctor > who doesn't mind patients who are pro-active toward their treatment.. > if I had never learned what I have from this list, questioned > anything, or had never changed doctors, I would have never known mine > was iodine resistant. I even saw one doctor who told me " its just > part of your esophogus " - she was talking about the spot that I later > found out was actually part of the recurrance. ( the same doctor > thought an elevated Tg didn't indicate anything)Needless to say, she > only lasted one visit. Remember with thyca, you DON " T have to dance > with the one who brung ya. Bekki in TX; tt & rai'89; rai 7/00; mid- > neck dissection > 2/01; 5/01-finished EBR > > > > He asked me if I felt better now, and I said, " I'm FINE - isn't > that > > the correct answer??? " So, I need to stay away from any medical > info > > I get from the internet and not worry my little head about a > thing. > > From now on, " I'm fine " . I guess there's no need for a yearly scan > > since I'm so darn fine! > > > > > > > Sandy > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 ....specifically, my serum calcium hasn't been in normal range since December, but stays b/n 8.2 and 8.3 (8.6 - 10.5) PTH is 22 now (same 10 - 55 range) was 37 in Dec. phosphorus is 4.2 (2.5 - 4.5 range) was 3.7 in Dec. Interestingly, my magnesium is also low 1.4 (1.3 - 1.9) which one sees often with chronic low calcium. I'm 7 1/2 months post op. Sandy Re: " I'm fine " > > > Sandy, > > You have every right to feel angry & concerned. What do you want to > do about the situation? > > Do you still have the clinical indicators of hypoparathyroidism: > > - low serum calcium (my lab normal range is - 8.6-10.5 mg/dl) > - elevated phosphorus > - low parathyroid hormone (my lab normal is 10-55 pg/ml) > > Is your serum calcium level in the normal range when you take the > 1500 mg daily calcium supplement? The recommended daily allowance > of calcium for women is between 1200-1500 mg/day - so your level > of supplement doesn't seem very high - especially if you have > reduced parathyroid function. > > If your calcium serum calcium level is still 'low' then which of your > doctors monitors your condition and makes recommendations on your > calcium supplement dose changes? When is your next blood test? > > There have been postings about having a thyca recurrence without > a corresponding rise in TG - most often found in the neck. I didn't > save the posts - but perhaps someone else could re-post the msgs from > our list doctors. > > In the short-term it is important to make sure that your serum > calcium level is in the normal range - many body functions require > calcium. Over the long-term...are you confident in this doctor's > abilities to monitor your thyca status & your health? > > . > > dx pap-Hurthle cell variant, tt 9/99, RAI 100 mCi 12/99, .2 Eltroxin, > 2.5 g calcium w vit D daily, TSH .005, TG undetectable. > > > > > > > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Bekki what a great line.. i'm gonna use it sometime >Remember with thyca, you > DON " T have to dance > with the one who brung ya. barb ===== ________________________________________________ Barb Burri dx pap 7/1/99 TT 8/13/99, RAI 63mci 4/26/00 - CLEAN SCAN 12/15/00 - .175 synthroid barburri@... // bburri@... // www.burri.com hailing from Plaistow NH (42 miles Due North of Boston) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 I guess my only question is .....Are you seeing a Dr. OTHER than the surgeon? I hope so! Marilyn Sandy Glenn wrote: > > > Just returned from my appt. with the surgeon to look at the 2 > > worrisome lymph nodes and discuss my low calcium 7 months post op. > > > > Not concerned at all, " You're fine " . Parathyroid tests have dropped > > from 37 to 22, below normal calcium tho taking 1500 mg. calcium and > > doing everything I can - still feel it drop and have symptoms....Not > > > concerned - " You're fine " . I asked if my PTH levels would be higher > > > with lower calcium levels if they were working probably and I got > > caught, " You've been reading on the internet, haven't you? " (finger > > wagging) Said I had the finest endo in the state and not to " doctor > > shop " . Just keep popping that chalk - parathyroids take time. I > > asked if there was a dangerous limit to calcium and he laughed. > > > > TG tests came back good, so not concerned about lymph nodes. First > I > > was told it was a tonsil (had them removed at age 6), then a 1.5 cm > > lymph node, now maybe part of a bone. I asked if there were ever > > situations of a local recurrence without a high TG test while TSH > > suppessed and he said no. > > > > He asked me if I felt better now, and I said, " I'm FINE - isn't that > > > the correct answer??? " So, I need to stay away from any medical > info > > I get from the internet and not worry my little head about a thing. > > From now on, " I'm fine " . I guess there's no need for a yearly scan > > since I'm so darn fine! > > > > Thanks to all for your the help, but I'm fine now. And I'm going > > brunette tomorrow. > > > > Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Yes, I'm seeing an Endo in the same Hospital conglomerate. Without going into the whole sordid experience, I'll just say that Endo says surgeon is wonderful and surgeon says Endo is best in the state. Just one big, happy family. I should feel so fortunate. Sandy Re: " I'm fine " > I guess my only question is .....Are you seeing a Dr. OTHER than the > surgeon? I hope so! > > Marilyn > > Sandy Glenn wrote: > > > > > > Just returned from my appt. with the surgeon to look at the 2 > > > worrisome lymph nodes and discuss my low calcium 7 months post op. > > > > > > Not concerned at all, " You're fine " . Parathyroid tests have dropped > > > from 37 to 22, below normal calcium tho taking 1500 mg. calcium and > > > doing everything I can - still feel it drop and have symptoms....Not > > > > > concerned - " You're fine " . I asked if my PTH levels would be higher > > > > > with lower calcium levels if they were working probably and I got > > > caught, " You've been reading on the internet, haven't you? " (finger > > > wagging) Said I had the finest endo in the state and not to " doctor > > > shop " . Just keep popping that chalk - parathyroids take time. I > > > asked if there was a dangerous limit to calcium and he laughed. > > > > > > TG tests came back good, so not concerned about lymph nodes. First > > I > > > was told it was a tonsil (had them removed at age 6), then a 1.5 cm > > > lymph node, now maybe part of a bone. I asked if there were ever > > > situations of a local recurrence without a high TG test while TSH > > > suppessed and he said no. > > > > > > He asked me if I felt better now, and I said, " I'm FINE - isn't that > > > > > the correct answer??? " So, I need to stay away from any medical > > info > > > I get from the internet and not worry my little head about a thing. > > > From now on, " I'm fine " . I guess there's no need for a yearly scan > > > since I'm so darn fine! > > > > > > Thanks to all for your the help, but I'm fine now. And I'm going > > > brunette tomorrow. > > > > > > Sandy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Dear Sandy, I almost never post to this group, but I have been " lurking " and reading most of the posts for quite some time. I have lived through a " saga " with several doctors since April 1999 when my gynecologist found my thyroid nodule that proved to contain follicular var. of pap. cancer. I had one endocrinologist charge me $172 for a phone call to her insisting that I get some answers to my questions about RAI before I had my second surgery (a completion thyroidectomy). I asked another endocrinologist I went to whether I had a lot or a little cancer in the lymph nodes of my neck. His reply was, " We don't care. Prognostically, it doesn't matter. It isn't even certain that you had any cancer in you lymph nodes, is it? " When I told him I didn't start to feel really well until six months after the RAI ablation, he told me I was " over-reacting. " Four doctors told me I didn't need the RAI, and four also told me I didn't need a completion thyroidectomy. Guess what I finally did last last week? I drove 8 hrs. to Lexington, KY, and saw Dr. Ain himself. It was the best thing I ever did. I know that everyone can't do that. I feel very fortunate that Dr. Ain is in network with my insurance. I would say though, after all I have been through, to do whatever you can do to get a doctor who knows about thyca! I wish you the best and hope you don't have to continue to go through this--like I have for two years!! Dianne Atlanta, GA fol var pap 4/99 pt 5/99;tt 10/99;RAI 150mCi 7/00--mets to neck lymph nodes; next scan 8/01 with Dr. Ain Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Hi Sandy, I do feel for you and was in the same position just a couple of months ago with my TSH levels and calcium and what my doctor felt was normal. I was riding at 4.8 for my TSH and my calcium was at 6.8 (normal being 7.0 - 9.0 and my Family Doctor said that was with in the normal range. " Maybe just a little high/normal " on the TSH and a " little low normal " on the calcium but felt he had my dosage right. I tried to tell him about TSH suppression etc, and he wouldn't listen to me since he had his Thyroid removed and was a doctor and knew all about this. Needless to say, I called my insurance company explained to them I wanted a Endo, to follow through with my follow up scans and RAI etc. I have Health Partners and I am able to self refer to only two doctors who work out of the same clinic. What a God send my Endo was. We sat down and I was so afraid and a bit intimidated from my last doctor but without coming off as a no-it-all patient I started to ask questions about " what are you guidelines to suppression? " etc... He told me everything I wanted to hear. I wish I knew of more doctors like him to refer him to other ppl I know. Jane 11/21/01 TT, dx Papillary Carcinoma 3.0cm x 2.5cm Right lobe, and under a cm left lobe 1/18/01 RAI i131 75.2mCi 4/16/01 still slightly hypo at 5.6 Taking Synthroid .150 daily New Scan and RAI at the end of July, Radiologists says I'll need a larger dosage this time around due to large remnant left behind. Re: " I'm fine " > > > Sandy, > > You have every right to feel angry & concerned. What do you want to > do about the situation? > > Do you still have the clinical indicators of hypoparathyroidism: > > - low serum calcium (my lab normal range is - 8.6-10.5 mg/dl) > - elevated phosphorus > - low parathyroid hormone (my lab normal is 10-55 pg/ml) > > Is your serum calcium level in the normal range when you take the > 1500 mg daily calcium supplement? The recommended daily allowance > of calcium for women is between 1200-1500 mg/day - so your level > of supplement doesn't seem very high - especially if you have > reduced parathyroid function. > > If your calcium serum calcium level is still 'low' then which of your > doctors monitors your condition and makes recommendations on your > calcium supplement dose changes? When is your next blood test? > > There have been postings about having a thyca recurrence without > a corresponding rise in TG - most often found in the neck. I didn't > save the posts - but perhaps someone else could re-post the msgs from > our list doctors. > > In the short-term it is important to make sure that your serum > calcium level is in the normal range - many body functions require > calcium. Over the long-term...are you confident in this doctor's > abilities to monitor your thyca status & your health? > > . > > dx pap-Hurthle cell variant, tt 9/99, RAI 100 mCi 12/99, .2 Eltroxin, > 2.5 g calcium w vit D daily, TSH .005, TG undetectable. > > > > > > > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Thanks Debbie, You're right, it is very stressful. I will look, but to be quite honest I just don't have the emotional fortitude right now. I have time - I need a break. My confidence in my health and healthcare is on shaky ground. I'll do the right thing. Thanks for your support!! Sandy " I'm fine " > > > > Just returned from my appt. with the surgeon to look at the 2 > > worrisome lymph nodes and discuss my low calcium 7 months post op. > > > > Not concerned at all, " You're fine " . Parathyroid tests have dropped > > from 37 to 22, below normal calcium tho taking 1500 mg. calcium and > > doing everything I can - still feel it drop and have symptoms....Not > > concerned - " You're fine " . I asked if my PTH levels would be higher > > with lower calcium levels if they were working probably and I got > > caught, " You've been reading on the internet, haven't you? " (finger > > wagging) Said I had the finest endo in the state and not to " doctor > > shop " . Just keep popping that chalk - parathyroids take time. I > > asked if there was a dangerous limit to calcium and he laughed. > > > > TG tests came back good, so not concerned about lymph nodes. First I > > was told it was a tonsil (had them removed at age 6), then a 1.5 cm > > lymph node, now maybe part of a bone. I asked if there were ever > > situations of a local recurrence without a high TG test while TSH > > suppessed and he said no. > > > > He asked me if I felt better now, and I said, " I'm FINE - isn't that > > the correct answer??? " So, I need to stay away from any medical info > > I get from the internet and not worry my little head about a thing. > > From now on, " I'm fine " . I guess there's no need for a yearly scan > > since I'm so darn fine! > > > > Thanks to all for your the help, but I'm fine now. And I'm going > > brunette tomorrow. > > > > Sandy > > > > > > For more information regarding thyroid cancer visit www.thyca.org. If you > do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank > email to thyca-unsubscribe > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Sandy, Pardon the intrusion but I would look for another doctor real quick. Even though you probably are fine the fact that he keeps " blowing you off " , ie dismissing your concerns this way doesn't do much for your worries. I personally dislike being treated as if I have no brain and can't think or reason or absorb information on my own. I find it stressful. If you are an inquiring, assertive person and it matters to you-don't be afraid to look for another doctor. Debbi " I'm fine " > Just returned from my appt. with the surgeon to look at the 2 > worrisome lymph nodes and discuss my low calcium 7 months post op. > > Not concerned at all, " You're fine " . Parathyroid tests have dropped > from 37 to 22, below normal calcium tho taking 1500 mg. calcium and > doing everything I can - still feel it drop and have symptoms....Not > concerned - " You're fine " . I asked if my PTH levels would be higher > with lower calcium levels if they were working probably and I got > caught, " You've been reading on the internet, haven't you? " (finger > wagging) Said I had the finest endo in the state and not to " doctor > shop " . Just keep popping that chalk - parathyroids take time. I > asked if there was a dangerous limit to calcium and he laughed. > > TG tests came back good, so not concerned about lymph nodes. First I > was told it was a tonsil (had them removed at age 6), then a 1.5 cm > lymph node, now maybe part of a bone. I asked if there were ever > situations of a local recurrence without a high TG test while TSH > suppessed and he said no. > > He asked me if I felt better now, and I said, " I'm FINE - isn't that > the correct answer??? " So, I need to stay away from any medical info > I get from the internet and not worry my little head about a thing. > From now on, " I'm fine " . I guess there's no need for a yearly scan > since I'm so darn fine! > > Thanks to all for your the help, but I'm fine now. And I'm going > brunette tomorrow. > > Sandy > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Dianne, Maybe you could swing by and pick me up on the way to your next appointment with Dr. Ain. I'm in Greenville, SC. I wonder how far he is from here.... Thanks, Sandy Re: " I'm fine " > Dear Sandy, > > I almost never post to this group, but I have been " lurking " and reading most > of the posts for quite some time. I have lived through a " saga " with several > doctors since April 1999 when my gynecologist found my thyroid nodule that > proved to contain follicular var. of pap. cancer. I had one endocrinologist > charge me $172 for a phone call to her insisting that I get some answers to > my questions about RAI before I had my second surgery (a completion > thyroidectomy). I asked another endocrinologist I went to whether I had a > lot or a little cancer in the lymph nodes of my neck. His reply was, " We > don't care. Prognostically, it doesn't matter. It isn't even certain that > you had any cancer in you lymph nodes, is it? " When I told him I didn't > start to feel really well until six months after the RAI ablation, he told me > I was " over-reacting. " Four doctors told me I didn't need the RAI, and four > also told me I didn't need a completion thyroidectomy. Guess what I finally > did last last week? I drove 8 hrs. to Lexington, KY, and saw Dr. Ain > himself. It was the best thing I ever did. I know that everyone can't do > that. I feel very fortunate that Dr. Ain is in network with my insurance. I > would say though, after all I have been through, to do whatever you can do to > get a doctor who knows about thyca! I wish you the best and hope you don't > have to continue to go through this--like I have for two years!! > > Dianne > Atlanta, GA > fol var pap 4/99 > pt 5/99;tt 10/99;RAI 150mCi 7/00--mets to neck lymph nodes; next scan 8/01 > with Dr. Ain > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Sandy, I am in Greenville, SC, also. After much phoning and almost desperation, I am going to some endos at the Medical University of South Carolina who work in Columbia. Just my luck that the Dept. of Endo is in Cola. because the rest of the specialities are in ton, I think. I have been living here for 10 years(went overseas during this time). I have also lived on the west coast, east coast and in Texas. This area of the country is not known for having great doctors that encourage patient input. I have had numerous situations arise over that past 10 years where I did not feel included or that my questions were answered or taken seriously in all areas of medicine. I also think the situation with the hospitals here is very negative and doesn't encourage a co-operative, positive climate between different groups of doctors. If you want any information about the endocrinology group I am seeing, please e-mail me privately at Debbi0609@.... If anything complicated comes up with my cancer, I would not hesitate to consult with Dr. Ain or one of the other docs recommended here. The doctor I currently have has at least 2 other thyca patients(both very young children and high risk) and has had many more in the past. He passed all the test questions I threw at him with flying colors and he actually returns my phone calls himself! Almost unheard of, I know. Debbi Estes TT3/7, pap ca fol var 1.7 cm rt lobe,w/vascular and lymph. involvement, RAI 4/26, 102.7 cm. .15 synthroid.Lots of activity in neck area on pre-ablation scan. Will rescan and go hypo again in 6 months. Re: " I'm fine " > > > > Dear Sandy, > > > > I almost never post to this group, but I have been " lurking " and reading > most > > of the posts for quite some time. I have lived through a " saga " with > several > > doctors since April 1999 when my gynecologist found my thyroid nodule that > > proved to contain follicular var. of pap. cancer. I had one > endocrinologist > > charge me $172 for a phone call to her insisting that I get some answers > to > > my questions about RAI before I had my second surgery (a completion > > thyroidectomy). I asked another endocrinologist I went to whether I had a > > lot or a little cancer in the lymph nodes of my neck. His reply was, " We > > don't care. Prognostically, it doesn't matter. It isn't even certain that > > you had any cancer in you lymph nodes, is it? " When I told him I didn't > > start to feel really well until six months after the RAI ablation, he told > me > > I was " over-reacting. " Four doctors told me I didn't need the RAI, and > four > > also told me I didn't need a completion thyroidectomy. Guess what I > finally > > did last last week? I drove 8 hrs. to Lexington, KY, and saw Dr. Ain > > himself. It was the best thing I ever did. I know that everyone can't do > > that. I feel very fortunate that Dr. Ain is in network with my insurance. > I > > would say though, after all I have been through, to do whatever you can do > to > > get a doctor who knows about thyca! I wish you the best and hope you > don't > > have to continue to go through this--like I have for two years!! > > > > Dianne > > Atlanta, GA > > fol var pap 4/99 > > pt 5/99;tt 10/99;RAI 150mCi 7/00--mets to neck lymph nodes; next scan 8/01 > > with Dr. Ain > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Sandy, I think Dr Ain is about 8 hours from here because I've considered this as an alternative. Debbi Re: " I'm fine " > > > > Dear Sandy, > > > > I almost never post to this group, but I have been " lurking " and reading > most > > of the posts for quite some time. I have lived through a " saga " with > several > > doctors since April 1999 when my gynecologist found my thyroid nodule that > > proved to contain follicular var. of pap. cancer. I had one > endocrinologist > > charge me $172 for a phone call to her insisting that I get some answers > to > > my questions about RAI before I had my second surgery (a completion > > thyroidectomy). I asked another endocrinologist I went to whether I had a > > lot or a little cancer in the lymph nodes of my neck. His reply was, " We > > don't care. Prognostically, it doesn't matter. It isn't even certain that > > you had any cancer in you lymph nodes, is it? " When I told him I didn't > > start to feel really well until six months after the RAI ablation, he told > me > > I was " over-reacting. " Four doctors told me I didn't need the RAI, and > four > > also told me I didn't need a completion thyroidectomy. Guess what I > finally > > did last last week? I drove 8 hrs. to Lexington, KY, and saw Dr. Ain > > himself. It was the best thing I ever did. I know that everyone can't do > > that. I feel very fortunate that Dr. Ain is in network with my insurance. > I > > would say though, after all I have been through, to do whatever you can do > to > > get a doctor who knows about thyca! I wish you the best and hope you > don't > > have to continue to go through this--like I have for two years!! > > > > Dianne > > Atlanta, GA > > fol var pap 4/99 > > pt 5/99;tt 10/99;RAI 150mCi 7/00--mets to neck lymph nodes; next scan 8/01 > > with Dr. Ain > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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