I left messages with my general doctor friday morning and again this morning. She hasn't returned either one and office hours are closed for the day now. This is all very strange and I have no idea what is going on. Had to take some clonazapan to stop my heart racing. I've been trying to keep calm through this ...but now I'm going back and forth between pissed and scared. I'd really like to start my medication and get some of these symptoms under control so I can enjoy some of the summer. That's my rant for the day. thanks for listening and I'll keep you posted.
Love,
Cristi
what's with endo???
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I spoke with one of the compounding pharmacies this morning. She is from the university of washington medical center and didn't have any MD recommendations. She said a lot has stopped using them because of a large law suit(sp?) concerning bio identical hormones. I have one more left to hear from. I'm keeping my fingers crossed. She did say that if I can get a compounding prescription that it would be extremely easy to fill.
Love,
Cristi
Love,
Cristi
Finally got to talk to my primary doctor's receptionist....who told me that my doctor had checked with other endocrinologists and they all recommended not to give me a compounding prescription. So I'm not going to get one from her either. My gut tells me this is just politics and there never was any checking. So now I either have to find new doctors or take the medicine as is and hope the amount of lactose in it wont't cause me problems. This sucks. I'm not sure what I'm going to do at this point.
Love,
Cristi
Love,
Cristi
Cristi-
Is your problem just lactose, or are you casein(milk-protein)-intolerant? If it is just lactose, perhaps taking a lactaid tablet alongside the med would help? I've deduced I've got a mild problem w/lactose - but if I take lactaid, and can have my lattes and ice cream no problem...
I agree it sounds political - how frustrating!!
Mary
Is your problem just lactose, or are you casein(milk-protein)-intolerant? If it is just lactose, perhaps taking a lactaid tablet alongside the med would help? I've deduced I've got a mild problem w/lactose - but if I take lactaid, and can have my lattes and ice cream no problem...
I agree it sounds political - how frustrating!!
Mary
Hi Mary,
Unfortunately it's casein. From Dr. Fine's test results I learned it was pretty high. So, I'm just assuming it will cause me problems. It is a small pill, but I will have to take it twice a day and for an extended time. So even if I can tolerate it well in the short run...will it eventually cause me problems down the road? I can't believe this is in my best interest. I'm still trying to figure out how to fix this but I'm wondering if I can.
Thanks for the support and the suggestions.
Love
Cristi
Unfortunately it's casein. From Dr. Fine's test results I learned it was pretty high. So, I'm just assuming it will cause me problems. It is a small pill, but I will have to take it twice a day and for an extended time. So even if I can tolerate it well in the short run...will it eventually cause me problems down the road? I can't believe this is in my best interest. I'm still trying to figure out how to fix this but I'm wondering if I can.
Thanks for the support and the suggestions.
Love
Cristi
Cristi,
Yes, I believe that you're the victum of a conspiracy. Those professionals, (and I use the term loosely here), are playing very unprofessional games, and it doesn't bode well for the future of medicine.
Apparently, they deeply resent a patient who dares to take the responsibility of making decisions about her own health, against their inconsiderate, (and inappropriate), behavior.
I'm guessing that many doctors are brainwashed into disliking compounding pharmacies, because the big pharmaceutical companies, (who profit the most from the name brand drugs that they promote), flood the doctors with all sorts of freebies, vacation trips, and various other very valuable perks, and make it pretty clear what they expect the doctors to prescibe, if they want to continue to receive the perks. I've often wondered if any of those doctors ever realize that they are in the same catagory as prostitutes, in that respect. Their ivory towers are pretty badly tarnished.
You know, when I think about this, it makes me damn mad. It should be illegal for a doctor to withhold appropriate treatment because of their own personal prejudices or profit motives, (or ignorance, for that matter), and in fact, it probably is illegal. Too many doctors are on an ego trip, and have forgotton the hippocratic oath, and what it means. Is it any wonder that naturopaths are increasingly winning business away from the medical profession? At least they're willing to listen to their what their patients have to say.
Love,
Tex
P S From a practical viewpoint, I agree with Mary. If you can't find a decent doctor, there's always a chance that you may not react to the inert ingredients in the meds. I've lost track of what we're talking about here--are you sure that there's casein in the pills.
Yes, I believe that you're the victum of a conspiracy. Those professionals, (and I use the term loosely here), are playing very unprofessional games, and it doesn't bode well for the future of medicine.
Apparently, they deeply resent a patient who dares to take the responsibility of making decisions about her own health, against their inconsiderate, (and inappropriate), behavior.
I'm guessing that many doctors are brainwashed into disliking compounding pharmacies, because the big pharmaceutical companies, (who profit the most from the name brand drugs that they promote), flood the doctors with all sorts of freebies, vacation trips, and various other very valuable perks, and make it pretty clear what they expect the doctors to prescibe, if they want to continue to receive the perks. I've often wondered if any of those doctors ever realize that they are in the same catagory as prostitutes, in that respect. Their ivory towers are pretty badly tarnished.
You know, when I think about this, it makes me damn mad. It should be illegal for a doctor to withhold appropriate treatment because of their own personal prejudices or profit motives, (or ignorance, for that matter), and in fact, it probably is illegal. Too many doctors are on an ego trip, and have forgotton the hippocratic oath, and what it means. Is it any wonder that naturopaths are increasingly winning business away from the medical profession? At least they're willing to listen to their what their patients have to say.
Love,
Tex
P S From a practical viewpoint, I agree with Mary. If you can't find a decent doctor, there's always a chance that you may not react to the inert ingredients in the meds. I've lost track of what we're talking about here--are you sure that there's casein in the pills.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
Yes, there's definitely lactose and corn starch filler. The compounding pharmacy I spoke with this morning said that the pure drug could be easily ordered and there are at least 4 other fillers that could be used. She said it would be particularly easy as it is an older drug with no patents existing anymore.
This is purely politics as my doc's receptionist used to work for the endo...and she is the only person I've been able to speak with. So all the info my doc has received is through this receptionist. So, I'm making an appointment with my doc to speak to her directly to see if we are both getting the correct info. It's a slim chance, but I'm holding out hope that if we're able to communicate face to face we can find a solution.
It's so frustrating as the solution is soooo simple. Keep you posted.
Love,
Cristi
Yes, there's definitely lactose and corn starch filler. The compounding pharmacy I spoke with this morning said that the pure drug could be easily ordered and there are at least 4 other fillers that could be used. She said it would be particularly easy as it is an older drug with no patents existing anymore.
This is purely politics as my doc's receptionist used to work for the endo...and she is the only person I've been able to speak with. So all the info my doc has received is through this receptionist. So, I'm making an appointment with my doc to speak to her directly to see if we are both getting the correct info. It's a slim chance, but I'm holding out hope that if we're able to communicate face to face we can find a solution.
It's so frustrating as the solution is soooo simple. Keep you posted.
Love,
Cristi
Hi Cristi,
To be sure we're on the same page here, lactose is a sugar, and casein is a protein, and they are both contained in milk. Corn protein is called zein. We refer to lactose intolerance, and casen intolerance, as if they were similar, but actually they result in two distinctly different types of reactions.
Lactose intolerance is caused by a deficiency of the enzyme lactase, and results in a condition of undigested, (unsplit), complex sugar passing into the colon, where it ferments, causing gas, bloating, discomfort, and osmotic diarrhea. This is uncomfortable, of course, but it's not really an MC event.
Casein intolerance, on the other hand, can trigger an autoimmune type of reaction, resulting in the symptoms of MC that we are all familiar with, (including arthritic symptoms), and possibly including secretory diarrhea.
Of course, when you're sick, the difference may seem irrelevant, but as far as the body is concerned, the effects of a reaction caused by casein intolerance are usually much more extensive, and possibly much longer lasting, than the effects of a lactase deficiency.
That said, I wish you the best of luck with your doctor's appointment. As you pointed out, the solution is so simple that it seems absolutely ridiculous that they insist on stonewalling you.
Love,
Wayne
To be sure we're on the same page here, lactose is a sugar, and casein is a protein, and they are both contained in milk. Corn protein is called zein. We refer to lactose intolerance, and casen intolerance, as if they were similar, but actually they result in two distinctly different types of reactions.
Lactose intolerance is caused by a deficiency of the enzyme lactase, and results in a condition of undigested, (unsplit), complex sugar passing into the colon, where it ferments, causing gas, bloating, discomfort, and osmotic diarrhea. This is uncomfortable, of course, but it's not really an MC event.
Casein intolerance, on the other hand, can trigger an autoimmune type of reaction, resulting in the symptoms of MC that we are all familiar with, (including arthritic symptoms), and possibly including secretory diarrhea.
Of course, when you're sick, the difference may seem irrelevant, but as far as the body is concerned, the effects of a reaction caused by casein intolerance are usually much more extensive, and possibly much longer lasting, than the effects of a lactase deficiency.
That said, I wish you the best of luck with your doctor's appointment. As you pointed out, the solution is so simple that it seems absolutely ridiculous that they insist on stonewalling you.
Love,
Wayne
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
I just met with my Naturopath ( who is in the same office as my doctor....she introduced me to the naturopath) and asked to meet with doctor while I was there. She said she could see me and talk about this. I waited an hour and twenty minutes after my naturopath appointment for her before being told it wouldn't be possible. So I see her tomorrow morning. I thought when I found a doctor and a naturopath working in the same office that I'd found the ideal situation...integrative medicine...I like both ..and don't want to choose.
My naturopath says that MDs will say that compounding pharmacies are not as reliable quality wise and not as precise dosage wise as traditional pharmacies. If my doctor uses this excuse..I'm not sure how to get around that as I don't know if it's valid or not. Does anyone know if these are valid concerns or just a way to not have to do something they don"t want to do.
So how is secretory diarrhea different from osmotic?
thanks...Love,
Cristi
I just met with my Naturopath ( who is in the same office as my doctor....she introduced me to the naturopath) and asked to meet with doctor while I was there. She said she could see me and talk about this. I waited an hour and twenty minutes after my naturopath appointment for her before being told it wouldn't be possible. So I see her tomorrow morning. I thought when I found a doctor and a naturopath working in the same office that I'd found the ideal situation...integrative medicine...I like both ..and don't want to choose.
My naturopath says that MDs will say that compounding pharmacies are not as reliable quality wise and not as precise dosage wise as traditional pharmacies. If my doctor uses this excuse..I'm not sure how to get around that as I don't know if it's valid or not. Does anyone know if these are valid concerns or just a way to not have to do something they don"t want to do.
So how is secretory diarrhea different from osmotic?
thanks...Love,
Cristi
Cristi,
What a mess! You also have the option of looking for a 'real' integrative medicine doctor. You can check Andrew Weil's website to find medical doctor's who have done his fellowship training at the University of Arizona. We have 3 in Albany. They are actually MD's who have received the training in integrative medicine. Generally, they would be more comfortable writing a prescription for a compounding pharmacy. But it might not be covered by insurance. Also, depending on the doctor, they might not feeling comfortable writing a prescription in a specialized field like endocrinology. But it would be another avenue to explore.
Good luck with this! Celia
What a mess! You also have the option of looking for a 'real' integrative medicine doctor. You can check Andrew Weil's website to find medical doctor's who have done his fellowship training at the University of Arizona. We have 3 in Albany. They are actually MD's who have received the training in integrative medicine. Generally, they would be more comfortable writing a prescription for a compounding pharmacy. But it might not be covered by insurance. Also, depending on the doctor, they might not feeling comfortable writing a prescription in a specialized field like endocrinology. But it would be another avenue to explore.
Good luck with this! Celia
I beleive in magic!
Cristi,
Ok, bear in mind that this is just my opinion--it's based on obvious facts, but nonetheless still just an opinion:
IMHO, they're just playing games with the facts. True, the dosage rates in pre-packaged drugs may theoreticallty be more accurate than hand measured doses, since they are packaged by automatic machinery. One of the reasons why pharmacists go to school, however, is so that they can learn how to accurately measure prescribed doses if drugs. If they're just going to count out a few pre-manufactered pills, why would they need to go to school for years, and pass a license exam? The fact of the matter is that they know more about the drugs than the typical medical doctor does.
So what if pre-manufactured pills do contain more uniform doses than hand-measured forms, (if, in fact they do, which is a dubious claim at best)? The dosage rates for most drugs are not chisled in stone. They depend on many variables, including the reason for treatment, (the "malady"), the weight, sex, and general health of the patient, any other meds that the patient might be taking, the stage of the malady being treated, etc.
IOW, the "reccomended" dosage is a matter of research, experience, and opinion. In most situations, there is no such thing as a "correct" dosage, from a precise mathematical viewpoint. The "recommended" dose is usually in the middle of a range of doses that typically gives the desired response in an "average" patient. Who among us is average?
The bottom line is: They're blowing smoke. It's a tempest in a teapot, and generally irrelevant to the outcome of most treatments.
Most problems caused by incorrect drug doses, (including patient mortalities and severe morbidities), are caused by doctors, not pharmacists. Doctors, (and their staffs), are frequently sued for "accidentally" causing a patients death by the improper administration of drugs. How often do you hear about a compounding pharmacist being sued for that problem?
Finally, doctors are regulated by the State Board of Medical Examiners, in the respective state or states in which they practice, (and many of them practice for years, but just can't seem to get it right. LOL). Pharmacies are regulated by the State Board of Pharmacy, in the respective state or states in which they operate. If sufficient complaints are filed against either, an investigation is undertaken, and, if appropriate, disciplinary action is taken, including yanking a license, for certain flagrant violations. If a pharmacy gets out of line, just like a malperforming doctor, they will not be allowed to continue in business.
You can access information like that on the web. Just google your State Board of whatever it is you are interested in, and you can look up disciplinary actions taken against any doctor, or any pharmacy in the state. This information is a matter of public record, so it's easy to verify. You can't access complaint filings, but you can see all disciplinary actions that any board has taken against any individual or any pharmacy, just by searching their database for the name that you are researching.
Ok, I got kind of off the track there, but I think you get the idea. LOL.
Love,
Tex
P S I almost forgot--secretory diarrhea is a form of D unique to MC, whereby, instead of extracting moisture from the lumen, as they normally do, the intestines actually secrete additional moisture into the lumen, thus causing very high rates of fecal volume. Osmotic diarrhea is a much more common form, and is genarally due to things like lactose intolerance, unabsorbed salts, sugar alcohols, laxatives, or other things that causes the colon to fail to remove the usual amounts of moisture from the lumen. Here's a good reference: http://www.merck.com/mrkshared/mmanual/ ... 27/27b.jsp
Ok, bear in mind that this is just my opinion--it's based on obvious facts, but nonetheless still just an opinion:
IMHO, they're just playing games with the facts. True, the dosage rates in pre-packaged drugs may theoreticallty be more accurate than hand measured doses, since they are packaged by automatic machinery. One of the reasons why pharmacists go to school, however, is so that they can learn how to accurately measure prescribed doses if drugs. If they're just going to count out a few pre-manufactered pills, why would they need to go to school for years, and pass a license exam? The fact of the matter is that they know more about the drugs than the typical medical doctor does.
So what if pre-manufactured pills do contain more uniform doses than hand-measured forms, (if, in fact they do, which is a dubious claim at best)? The dosage rates for most drugs are not chisled in stone. They depend on many variables, including the reason for treatment, (the "malady"), the weight, sex, and general health of the patient, any other meds that the patient might be taking, the stage of the malady being treated, etc.
IOW, the "reccomended" dosage is a matter of research, experience, and opinion. In most situations, there is no such thing as a "correct" dosage, from a precise mathematical viewpoint. The "recommended" dose is usually in the middle of a range of doses that typically gives the desired response in an "average" patient. Who among us is average?
The bottom line is: They're blowing smoke. It's a tempest in a teapot, and generally irrelevant to the outcome of most treatments.
Most problems caused by incorrect drug doses, (including patient mortalities and severe morbidities), are caused by doctors, not pharmacists. Doctors, (and their staffs), are frequently sued for "accidentally" causing a patients death by the improper administration of drugs. How often do you hear about a compounding pharmacist being sued for that problem?
Finally, doctors are regulated by the State Board of Medical Examiners, in the respective state or states in which they practice, (and many of them practice for years, but just can't seem to get it right. LOL). Pharmacies are regulated by the State Board of Pharmacy, in the respective state or states in which they operate. If sufficient complaints are filed against either, an investigation is undertaken, and, if appropriate, disciplinary action is taken, including yanking a license, for certain flagrant violations. If a pharmacy gets out of line, just like a malperforming doctor, they will not be allowed to continue in business.
You can access information like that on the web. Just google your State Board of whatever it is you are interested in, and you can look up disciplinary actions taken against any doctor, or any pharmacy in the state. This information is a matter of public record, so it's easy to verify. You can't access complaint filings, but you can see all disciplinary actions that any board has taken against any individual or any pharmacy, just by searching their database for the name that you are researching.
Ok, I got kind of off the track there, but I think you get the idea. LOL.
Love,
Tex
P S I almost forgot--secretory diarrhea is a form of D unique to MC, whereby, instead of extracting moisture from the lumen, as they normally do, the intestines actually secrete additional moisture into the lumen, thus causing very high rates of fecal volume. Osmotic diarrhea is a much more common form, and is genarally due to things like lactose intolerance, unabsorbed salts, sugar alcohols, laxatives, or other things that causes the colon to fail to remove the usual amounts of moisture from the lumen. Here's a good reference: http://www.merck.com/mrkshared/mmanual/ ... 27/27b.jsp
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Celia,
I've found an internal medicine MD who is into nutrition and teaches some classes at Whole foods and he also calls himself a Functional medicine doctor. Is that similar to integrative medicine? I was going to call tomorrow and try to get a feel for his practice...plan B, in case I strike out tomorrow with my doctor.
Hi Tex,
Thanks for all the great info. You are a wealth of wisdom. Everything you said sounds dead on to me. I've always thought it was crazy that my 220 lb. husband gets the same dose antibiotic prescribed as I get. Well, I'm going to give it my best shot. I see her tomorrow morning so I'll let you know how it goes. Thanks again for your support.
Love,
Cristi
I've found an internal medicine MD who is into nutrition and teaches some classes at Whole foods and he also calls himself a Functional medicine doctor. Is that similar to integrative medicine? I was going to call tomorrow and try to get a feel for his practice...plan B, in case I strike out tomorrow with my doctor.
Hi Tex,
Thanks for all the great info. You are a wealth of wisdom. Everything you said sounds dead on to me. I've always thought it was crazy that my 220 lb. husband gets the same dose antibiotic prescribed as I get. Well, I'm going to give it my best shot. I see her tomorrow morning so I'll let you know how it goes. Thanks again for your support.
Love,
Cristi
Cristi,
Your statement about your husband being prescribed the same dosage as you, reminded me that when farmers and ranchers vasccinate cattle, or any other livestock, the dosage rate is always defined in terms of ccs per pound, or per 100 pounds of body weight. Always! Veterinarians can obviously do the necessary math. Maybe the problem is that MDs can't do the math. LOL.
Good luck with your visit tomorrow morning.
Love,
Tex
Your statement about your husband being prescribed the same dosage as you, reminded me that when farmers and ranchers vasccinate cattle, or any other livestock, the dosage rate is always defined in terms of ccs per pound, or per 100 pounds of body weight. Always! Veterinarians can obviously do the necessary math. Maybe the problem is that MDs can't do the math. LOL.
Good luck with your visit tomorrow morning.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi all,
Family practice docs down here write scripts for compound pharmacies all the time -- no big deal.
My mom is getting a drug manufactured in Canada compounded here in Houston for her dementia. It was written by one of the leading superspecialists in the world for people with diseases like PD, and more unusual forms.
Next time I see my endo (another top researcher in his field) I will ask him if there's any particular bad experience than he's observed with endo drugs and compounding. He loves my questions for some reason! Ha! I'll bet no one else asks the same ones I do!
Oh, and by the way, doctors' staffs rarely give medications, so if they did, it would be a blip on the radar screen in terms of the number of medication errors that are made. Most medications are given by hospitals and their staffs, so logically, this is where the errors would be made.
If I were you, I'd ask this guy what his reason actually is for not wanting to use a compound pharmacy.
If he won't comply with giving you a compounding prescription for the med HE'S prescribed himself, I think you have ever right to request a refund, and I think your insurance company may as well, particularly if you have to get still another appointment with someone else.
First though, I would want to hear his explanation, unless you feel you already know what his stated the issue is.
Perhaps there's been some particularly bad experience with a compound pharmacy in this geographic area, and they are guy shy that this will happen again, particularly if several of the others in his field are of the same opinion.
Still, if you can't take the allergens, you can't take the allergens, so some alternative needs to be offered you.
Also, did you happen to ask a pharmacist if there's any medication that essentially will do the same thing as what was prescribed that MAY come from the manufacturer without any of your allergens to start with. That might be something that this doc would be willing to do, and if he's got the male ego thing going, it would give him an out.
(Sexist, aren't I, but some men just have that problem. Certainly not all, but when they do, look out! I don't put up with any of that non-sense no matter what they do for a living. There are too many healthy people out there to deal with losers, and you certainly don't need that when you are ill.)
Yours, Luce
Family practice docs down here write scripts for compound pharmacies all the time -- no big deal.
My mom is getting a drug manufactured in Canada compounded here in Houston for her dementia. It was written by one of the leading superspecialists in the world for people with diseases like PD, and more unusual forms.
Next time I see my endo (another top researcher in his field) I will ask him if there's any particular bad experience than he's observed with endo drugs and compounding. He loves my questions for some reason! Ha! I'll bet no one else asks the same ones I do!
Oh, and by the way, doctors' staffs rarely give medications, so if they did, it would be a blip on the radar screen in terms of the number of medication errors that are made. Most medications are given by hospitals and their staffs, so logically, this is where the errors would be made.
If I were you, I'd ask this guy what his reason actually is for not wanting to use a compound pharmacy.
If he won't comply with giving you a compounding prescription for the med HE'S prescribed himself, I think you have ever right to request a refund, and I think your insurance company may as well, particularly if you have to get still another appointment with someone else.
First though, I would want to hear his explanation, unless you feel you already know what his stated the issue is.
Perhaps there's been some particularly bad experience with a compound pharmacy in this geographic area, and they are guy shy that this will happen again, particularly if several of the others in his field are of the same opinion.
Still, if you can't take the allergens, you can't take the allergens, so some alternative needs to be offered you.
Also, did you happen to ask a pharmacist if there's any medication that essentially will do the same thing as what was prescribed that MAY come from the manufacturer without any of your allergens to start with. That might be something that this doc would be willing to do, and if he's got the male ego thing going, it would give him an out.
(Sexist, aren't I, but some men just have that problem. Certainly not all, but when they do, look out! I don't put up with any of that non-sense no matter what they do for a living. There are too many healthy people out there to deal with losers, and you certainly don't need that when you are ill.)
Yours, Luce
Cristi,
I haven't heard that particular word ("functional medicine") myself, but this looks like a great option to check. Seems like internists often treat complex situations, might be perfect for you!
I had dinner with a friend last night who saw a neurologist that told him that there's nothing wrong with him, he just needed to clean up his diet. So suprises are always possible!
Good luck, Celia
I haven't heard that particular word ("functional medicine") myself, but this looks like a great option to check. Seems like internists often treat complex situations, might be perfect for you!
I had dinner with a friend last night who saw a neurologist that told him that there's nothing wrong with him, he just needed to clean up his diet. So suprises are always possible!
Good luck, Celia
I beleive in magic!