PatNJ
09-19-2005, 09:26 AM
I can't believe it's been three months since I last saw my endo. Some of you might recall that when she and I discussed the pros/cons of going on Forteo for my worsening T-score, I never thought to ask her if I should continue to take Actonel, until the first time I had to take it after starting on Forteo.
I left a message for her with her assistant and received a phone call in which the assistant told me that Dr. H. wants me to continue to take Actonel for the first six months that I'm on Forteo.
After fielding comments from fellow Forteo users here, doing a bit of online research, and talking to the "good folks" at Forteo, I became quite leery of the doctor's instructions. I confess that I did take Actonel about four times since my first Forteo injection on July 6, to appease my "guilt".
I'm going to the appt. today, armed with an assortment of journal articles about studies that suggest that taking both a bisphosphonate (Fosamax) and Forteo actually results in lower bone mineral density than taking Forteo alone.
Don't ask me why, but I am feeling extremely nervous about this afternoon's "encounter" with my endo. I have seen her only a couple of times, but I have formed the distinct impression that she will not be open to my point of view (nor to the convincing evidence in support of same). I've read that some doctors will "fire" patients who do not follow their instructions, and I've already seen the other two endos in our ins. plan who are within easy driving distance. (I have chronic double vision and can't drive long distances.) One was a nut-case; the other was downright nasty and rude. (I eventually found an endo who was wonderful, but I lost him a year ago due to a change in our ins. plan.)
Any last-minute suggestions on how best to negotiate with Dr. H., so that she will agree with my "no Actonel" stance, even if she remains unconvinced that it is the best treatment plan for me? I really do fear that it's going to get "ugly". :eek:
Thanks.
P.S. I also lost my rheumy when we had to switch plans, and I haven't found one yet who speaks English and, again, is within double-vision driving reach. My old one would have been another source for Forteo and might not have pushed the Actonel.
I left a message for her with her assistant and received a phone call in which the assistant told me that Dr. H. wants me to continue to take Actonel for the first six months that I'm on Forteo.
After fielding comments from fellow Forteo users here, doing a bit of online research, and talking to the "good folks" at Forteo, I became quite leery of the doctor's instructions. I confess that I did take Actonel about four times since my first Forteo injection on July 6, to appease my "guilt".
I'm going to the appt. today, armed with an assortment of journal articles about studies that suggest that taking both a bisphosphonate (Fosamax) and Forteo actually results in lower bone mineral density than taking Forteo alone.
Don't ask me why, but I am feeling extremely nervous about this afternoon's "encounter" with my endo. I have seen her only a couple of times, but I have formed the distinct impression that she will not be open to my point of view (nor to the convincing evidence in support of same). I've read that some doctors will "fire" patients who do not follow their instructions, and I've already seen the other two endos in our ins. plan who are within easy driving distance. (I have chronic double vision and can't drive long distances.) One was a nut-case; the other was downright nasty and rude. (I eventually found an endo who was wonderful, but I lost him a year ago due to a change in our ins. plan.)
Any last-minute suggestions on how best to negotiate with Dr. H., so that she will agree with my "no Actonel" stance, even if she remains unconvinced that it is the best treatment plan for me? I really do fear that it's going to get "ugly". :eek:
Thanks.
P.S. I also lost my rheumy when we had to switch plans, and I haven't found one yet who speaks English and, again, is within double-vision driving reach. My old one would have been another source for Forteo and might not have pushed the Actonel.
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taape
09-19-2005, 09:50 AM
Good Morning,
This does sound like a difficult situation. Are you sure you can't find another Endo within your insurance group? This one should have called you back and discussed the reason that she wanted you on two medications at the same time.
It's a good idea to bring any research articles with you and tell her that no one on this forum takes both that you know of. Plus mention your concern for taking so much medication. Is there more than one Endo in the office your going to? You could ask for a consult to a another Endo or another specialist that deals specifically just with osteo, I can't remember the name of the speciality.
If it was me I'd actually call the insurance company and talk with them about your concern and that you want authorization to see another Endo for a SECOND OPINION about the medication issue. Then see if a friend can drive you to an appointment out of town so at least you can be seen by someone else. I really think that the insurance company should know that your not satisfied so there's justificaiton to be referred to someone else. It's just me but I would probably call the Endo's office and say I'm sick until I had this worked out. There's no point in returning there just to argue with the doctor and not get your concern answered.
This does sound like a difficult situation. Are you sure you can't find another Endo within your insurance group? This one should have called you back and discussed the reason that she wanted you on two medications at the same time.
It's a good idea to bring any research articles with you and tell her that no one on this forum takes both that you know of. Plus mention your concern for taking so much medication. Is there more than one Endo in the office your going to? You could ask for a consult to a another Endo or another specialist that deals specifically just with osteo, I can't remember the name of the speciality.
If it was me I'd actually call the insurance company and talk with them about your concern and that you want authorization to see another Endo for a SECOND OPINION about the medication issue. Then see if a friend can drive you to an appointment out of town so at least you can be seen by someone else. I really think that the insurance company should know that your not satisfied so there's justificaiton to be referred to someone else. It's just me but I would probably call the Endo's office and say I'm sick until I had this worked out. There's no point in returning there just to argue with the doctor and not get your concern answered.
PatNJ
09-19-2005, 10:25 AM
Thanks, taape, for your comments. I would love to cancel my appt. today for the reasons you mentioned, but since I have hypothyroidism and am not (in my opinion, not the infamous endo's) optimized on meds, I need to see her in order to get a lab requisition for my every-3-mos. bloodwork.
Without realizing it, you reminded me of a point that had been raised when I first brought this topic up back in July-- the insurance company's role in this debate. Having used up the Actonel samples provided to me by the n/p when I saw her for my Forteo instructions, on my "guilt" doses, I would need a new Rx. I think I'll call the ins. co. before my appt. to see if they would even cover the Actonel, and if not, why not. The latter is important, because Dr. More Is Better might offer to keep me supplied with Actonel samples indefinitely if the ins. co. says no. If their reasoning is that it's not necessary, or, better yet, counterproductive, to be on both meds, then that gives me another weapon in my arsenal.
Yes, there are other doctors in this endo's group. If Dr. H. gives me a hard time, would I just come right out and tell her I'd like to see one of her associates for a second opinion, or is that just not done?
I'm concerned about going outside of the group for another opinion, because I don't see how I could then go back to H and say, "Nanananananah, Dr. So-and-so agreed with me about the Actonel" and expect her to continue seeing me as a patient. I would have to stay with the second-opinion doctor, and relying on friends for rides that would be as long as 45 minutes away, plus at least a two-hour wait in the waiting room, followed by time with the doctor, would not be fair.
I don't even have a primary care doctor any more, ever since the dreaded change in ins. plans. He or she could have acted as intermediary for me. I finally have a couple of names, though, that I want to bounce off my GYN.
I guess my best bet for now about the endo mess is to talk to my ins. co., go in this afternoon with all my "stuff", and see what happens.
Thanks again for your input, taape.
Without realizing it, you reminded me of a point that had been raised when I first brought this topic up back in July-- the insurance company's role in this debate. Having used up the Actonel samples provided to me by the n/p when I saw her for my Forteo instructions, on my "guilt" doses, I would need a new Rx. I think I'll call the ins. co. before my appt. to see if they would even cover the Actonel, and if not, why not. The latter is important, because Dr. More Is Better might offer to keep me supplied with Actonel samples indefinitely if the ins. co. says no. If their reasoning is that it's not necessary, or, better yet, counterproductive, to be on both meds, then that gives me another weapon in my arsenal.
Yes, there are other doctors in this endo's group. If Dr. H. gives me a hard time, would I just come right out and tell her I'd like to see one of her associates for a second opinion, or is that just not done?
I'm concerned about going outside of the group for another opinion, because I don't see how I could then go back to H and say, "Nanananananah, Dr. So-and-so agreed with me about the Actonel" and expect her to continue seeing me as a patient. I would have to stay with the second-opinion doctor, and relying on friends for rides that would be as long as 45 minutes away, plus at least a two-hour wait in the waiting room, followed by time with the doctor, would not be fair.
I don't even have a primary care doctor any more, ever since the dreaded change in ins. plans. He or she could have acted as intermediary for me. I finally have a couple of names, though, that I want to bounce off my GYN.
I guess my best bet for now about the endo mess is to talk to my ins. co., go in this afternoon with all my "stuff", and see what happens.
Thanks again for your input, taape.
CrohnieToo
09-19-2005, 10:42 AM
Well, this is late, sorry. My 'puter was down for a bit. There is the possiblity that your Endo's desk dragon didn't check with teh doctor and took it upon herself to answer your question and gave you thr wrong answer. IT wouldn't be the first time this has happened in various doctor's offices around the country.
Hey, if finding another Endo is that much of a problem, and this Endo is adamant that you take both Actonel and Forteo, just tuck the script for the Actonel in your purse, smile and don't bother to fill or take the Actonel. That isn't the ideal way to handle the situation but sometimes we do what we have to do.
Hey, if finding another Endo is that much of a problem, and this Endo is adamant that you take both Actonel and Forteo, just tuck the script for the Actonel in your purse, smile and don't bother to fill or take the Actonel. That isn't the ideal way to handle the situation but sometimes we do what we have to do.
newbones
09-19-2005, 11:31 AM
PatNJ,
I'm sorry I don't have any good advice for you. I too hate to be confrontational with doctors (or anyone for that matter) but I'm slowly learning that sometimes we have to. I think Crohnie Too's suggestion that the advice to take both may not have even come from the doctor has some merit. I do think that these things happen. When I had my first bone scan I was sent a form telling me that it was normal. I didn't actually talk to the doctor about it or see the actual test results, just this form. So I was shocked when I had the next one and my T-score was so bad. The doctor then told me that the first one was not normal and showed me the results. Makes me think that the doctor didn't even see the first one. So I've learned to ask to see the test results. Sounds like checking with the insurance company would be a good idea as well. At any rate, I wish you well in your encounter and I'm sure all our thoughts will be with you this afternoon.
I'm sorry I don't have any good advice for you. I too hate to be confrontational with doctors (or anyone for that matter) but I'm slowly learning that sometimes we have to. I think Crohnie Too's suggestion that the advice to take both may not have even come from the doctor has some merit. I do think that these things happen. When I had my first bone scan I was sent a form telling me that it was normal. I didn't actually talk to the doctor about it or see the actual test results, just this form. So I was shocked when I had the next one and my T-score was so bad. The doctor then told me that the first one was not normal and showed me the results. Makes me think that the doctor didn't even see the first one. So I've learned to ask to see the test results. Sounds like checking with the insurance company would be a good idea as well. At any rate, I wish you well in your encounter and I'm sure all our thoughts will be with you this afternoon.
PatNJ
09-19-2005, 07:43 PM
Thanks, Chronie and newbones, for adding your thoughts to taape's. All those good wishes held me in good stead because I didn't have any trouble at all with the doctor!!! :cool: I showed her the article and abstracts, and we discussed them a bit; she likes to play the "a little knowledge is a dangerous thing" game, which I find very patronizing, but the bottom line is that she literally "doesn't care" if I take the Actonel or not!!
In fact, as you both pointed out, her "instructions" as relayed to me through her "assistant" were not exactly accurate! Rather than wanting me to continue the Actonel for the first six months of being on Forteo, she had merely indicated that I should "finish up what (Actonel) I had."
So we are both on the same page now, and I don't have to feel those undercurrents of guilt for "disobeying" her orders. :angel:
Oh, I tried to reach my ins. co. to ask if I should be taking both meds, and would they even cover both. I was given a separate "pharmacy management" number (or some such thing) to call, which I did, but I would have had to leave my name and number for a call-back. Knowing that I would be gone for a good part of the afternoon, I just hung up and figured I'd call tomorrow if Dr. H gave me a hard time. Now I don't need to!!
I still wish I could find an easier and more knowledgeable endo to work with, though. When I was first diagnosed with autoimmune hypothyroidism two years ago, I all but devoted my life to learning everything I could about the condition, participating in a very active message board, and became more informed on the topic than most doctors. It's frightening how unenlightened even endos are about thyroid disease. Dr. H is no exception. I tried to "get through" to her at the time of my first appt. with her, and that's when she pullled out the gem about "a little knowledge..." I give up.
Thanks to all of you ladies for your concern and support. :)
In fact, as you both pointed out, her "instructions" as relayed to me through her "assistant" were not exactly accurate! Rather than wanting me to continue the Actonel for the first six months of being on Forteo, she had merely indicated that I should "finish up what (Actonel) I had."
So we are both on the same page now, and I don't have to feel those undercurrents of guilt for "disobeying" her orders. :angel:
Oh, I tried to reach my ins. co. to ask if I should be taking both meds, and would they even cover both. I was given a separate "pharmacy management" number (or some such thing) to call, which I did, but I would have had to leave my name and number for a call-back. Knowing that I would be gone for a good part of the afternoon, I just hung up and figured I'd call tomorrow if Dr. H gave me a hard time. Now I don't need to!!
I still wish I could find an easier and more knowledgeable endo to work with, though. When I was first diagnosed with autoimmune hypothyroidism two years ago, I all but devoted my life to learning everything I could about the condition, participating in a very active message board, and became more informed on the topic than most doctors. It's frightening how unenlightened even endos are about thyroid disease. Dr. H is no exception. I tried to "get through" to her at the time of my first appt. with her, and that's when she pullled out the gem about "a little knowledge..." I give up.
Thanks to all of you ladies for your concern and support. :)
taape
09-19-2005, 09:39 PM
I'm glad to hear it all worked out!
spinewhine
09-19-2005, 11:46 PM
Pat, I'm not good at being confrontational with doctors either. But I think it wouldn't be out of order for you to say that since your diagnosis, you've been very concerned with learning more about your ailment and that you've done considerable internet research and "talked" to a number of others on Forteo who have all been told to wait and use Fosamax or Actonel after the course of treatment on Forteo has been concluded. You could mention that you were referred to studies showing greater effectiveness of Forteo without Actonel and tell her that you'd be more comfortable doing it that way. Maybe she'll just say, "Fine."
PatNJ
09-20-2005, 01:19 AM
Thanks, spinewhine, for your concern and suggestion. Perhaps you missed my follow-up post, or perhaps it got lost in my usual ramblings-on, but the doctor didn't give me a hard time about stopping the Actonel! In fact, at one point, with a smile, she said, "I don't care if you throw them all out!" :bouncing:
I sitll wish she weren't so darned patronizing, though. :nono: She said to me at my first appt. (today's was the third) that I "obsessed" too much over my health, when I tried to express my unhappiness with the way my hypothyroidism was being treated. At this point, all she is to me is a "source" - lol - for my Forteo.
Thanks again.
I sitll wish she weren't so darned patronizing, though. :nono: She said to me at my first appt. (today's was the third) that I "obsessed" too much over my health, when I tried to express my unhappiness with the way my hypothyroidism was being treated. At this point, all she is to me is a "source" - lol - for my Forteo.
Thanks again.
spinewhine
09-20-2005, 09:38 PM
Thanks, spinewhine, for your concern and suggestion. Perhaps you missed my follow-up post, or perhaps it got lost in my usual ramblings-on, but the doctor didn't give me a hard time about stopping the Actonel! In fact, at one point, with a smile, she said, "I don't care if you throw them all out!" :bouncing:
I sitll wish she weren't so darned patronizing, though. :nono: She said to me at my first appt. (today's was the third) that I "obsessed" too much over my health, when I tried to express my unhappiness with the way my hypothyroidism was being treated. At this point, all she is to me is a "source" - lol - for my Forteo.
Thanks again.
OOPS. I guess I read your earlier post and somehow missed the follow up. Glad it went well. (I think we're all kind of entitled to obsess over our own health.)
I sitll wish she weren't so darned patronizing, though. :nono: She said to me at my first appt. (today's was the third) that I "obsessed" too much over my health, when I tried to express my unhappiness with the way my hypothyroidism was being treated. At this point, all she is to me is a "source" - lol - for my Forteo.
Thanks again.
OOPS. I guess I read your earlier post and somehow missed the follow up. Glad it went well. (I think we're all kind of entitled to obsess over our own health.)
PatNJ
09-20-2005, 10:58 PM
Thanks, spinewhine. I think that many doctors don't realize there's a fine line between "informed" and "obsessed". :rolleyes:
CrohnieToo
09-21-2005, 09:38 AM
I know that I would take offense at being told I "obsessed" about my health!!! And I wouldn't be able to hide it nor would I try to. We can no longer rely on our doctors to stay on top of our health for us. A prime example is an Endo who is not aware of the studies showing that the bisphosphonates slow down the effectiveness of Forteo!
I have quite a bit of respect for my Gastro, but I have to tell you, I was REALLY shook when she suggested Remicade for my Crohn's disease and I asked her about considering Humira instead and she didn't even know what Humira was!!!! As it turned out, Remicade was conducting a clinicial trial to study the efficacy and safety of Remicade for those with COPD and since I have COPD I said I would feel safer trying Remicade AFTER learning the results of those clinical trials. Shortly thereafter a new enteric antibiotic was FDA approved, Xifaxan (rifaximin), and since my Crohn's had always responded well to antibiotics I sent her an abstract about Xifaxan and asked to be scripted that instead. It worked well for me fortunately and I'm back in symptomatic remission.
:bouncing:
I have quite a bit of respect for my Gastro, but I have to tell you, I was REALLY shook when she suggested Remicade for my Crohn's disease and I asked her about considering Humira instead and she didn't even know what Humira was!!!! As it turned out, Remicade was conducting a clinicial trial to study the efficacy and safety of Remicade for those with COPD and since I have COPD I said I would feel safer trying Remicade AFTER learning the results of those clinical trials. Shortly thereafter a new enteric antibiotic was FDA approved, Xifaxan (rifaximin), and since my Crohn's had always responded well to antibiotics I sent her an abstract about Xifaxan and asked to be scripted that instead. It worked well for me fortunately and I'm back in symptomatic remission.
:bouncing:
PatNJ
09-21-2005, 09:51 AM
You hit the nail on the head, Chronie. Interesting twist, though... when Dr. H was glancing at the papers I brought in, she appeared to be nodding knowingly, but then she had the nerve to tell me I had "latched onto" one piece of the puzzle and ran with it, but that I didn't have enough "experience" to grasp the "whole story". :mad:
You don't know how close I came to saying, "I might not be a DOCTOR, but I can read, you idiot!"
You don't know how close I came to saying, "I might not be a DOCTOR, but I can read, you idiot!"
taape
09-21-2005, 09:20 PM
Dealing with doctors is really a trying experience. Between the expertise combined with the personality of the doctor and then dealing with the insurance company - it just tires me out. Really good doctors are so hard to find.
newbones
09-22-2005, 12:41 PM
Amen, taape! You are so right!
CrohnieToo
09-22-2005, 11:12 PM
I sometimes think they quit "making" good doctors back in the 60s and 70s!!! Then once in a very great while you stumble across a real "Marcus Welby, MD" and it almost seems like a miracle!