HealingWell
Search Close Search
☰

My Doctor's Follow-up & Crazy Response to Drug-Induced Diabetes...

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/12/2007 5:19 PM (GMT 0)
Hello to all. This is still regarding my previous post. I had my appt. with my PCP on Thurs. I have waited until now to write about it so I wouldn't be ranting so much and hopefully be able to make sense to you. Unfortunately, it was not productive! I can't figure out if he became upset with me over my changing rheumy's (my other one was in his group) which was the very first thing I told him, or if it was to do with the coding issue for Medicare. All I know is, he talked so differently to me this time; saying "Ms..." at the beginning of each sentence as if he were disciplining a school-aged child. I can't explain what confusion with people and their responses to me; especially in a doctor's appt. setting does to my brain with it already stressing in the first place. I completely lose my thoughts. I waste the whole rest of the appt. analyzing why they're doing that way. Even though I have notes with me that I've made for the appt. and try to refer to them, I'm lucky if I can read over each one and even lightly cover it. It's like he kept saying two totally different things in the same sentence.

He assured me that the coding for Medicare had to be "Steroid-induced Diabetes"; yet at the same time he demanded there was no concern for the high blood sugar numbers I have been seeing on my meter. I just didn't get it. And his attitude with me left me speechless. I wasn't asking him to commit fraud by changing the coding. I was just repeating exactly what Medicare told me about the coding. They are the ones that have to pay, I wouldn't think they would tell a patient to intentionally ask their doctor to commit fraud and send false information back to them. I was thinking maybe there was a code for needing to keep my blood sugar monitored for the purpose of allowing me to taper the prednisone without problems. He just kept saying that all Medicare would allow me to check my blood sugar was once a day. He insisted that my previous H1C test results showed no concern for levels too high. I don't doubt that, during that last 3 month span when he tested, I was probably only tapering 1 time for maybe 3 days total. When I was on 10mg of prednisone, I hardly ever saw readings out of the normal range. I even used that 189 reading while on 9mg as an example (vs. the 123 reading while on 10mg for the same exact meal). If that is not too high, why didn't he take a minute and explain the levels to me so I would better understand and not be concerned either? It was on my June appointment when he saw a reading of only 167 when he gave me the meter in the first place. Was that not a problem? Why then did he give me the meter? When I went into detail with finding how my blood sugar was going up while having eaten the same meals as when I was on 10mg (comparing that to my readings now on 9mg); he said my blood sugar readings should actually be going down since I'm taking prednisone away. Well it's not, is that not a problem?

I also showed him my toes which were looking okay still since I'm watching what I eat. I did try to explain to him how they were already looking on day 3 of this taper and that it appeared to be those higher blood sugar readings that seemed to be causing it. He hardly looked at them, then said he didn't know why my toes were doing that. But quickly followed up with the usual explanation that it looked like my toenail was turned down slightly (in other words, in-grown toenail again). I did asked him if he treated patients with in-grown toenails and he said that he'd seen them before. I then asked could in-grown toes be controlled by your blood sugar level, and he just said "Ms...., I don't know why your toes are doing that". Well, I don't either. Isn't that a problem?

Anyway, going by what he says I should be able to get my blood sugar supplies refilled at the pharmacy the first week in September (That's when the 90 days would be up from when he first gave me the meter had I only checked once a day). I just really don't look for them to fill it even then with that new "Steroid-induced Diabetes" coding based on what Medicare said. I still have about 20 test strips left. I'm going to try to follow the list of foods that I've started for what I know I can eat until then so I won't have to check so often. I compared prices, and for just a little over $11 I picked up 100 lancets for my machine at a local drug store (I was about out of those). I guess I'll just have to get the supplies myself until I have all of the foods I regularly eat checked. I would think I still need to be able to check it from time to time after I've been doing this taper for longer so I can see if it's starting to level out and maybe my body is adjusting. I'll run this all my rheumy on my next appt. with him too (in about a week and a half).

Last night after supper, I came up with a reading of 205 for my blood sugar (2 hrs. after eating). That is the highest reading I've ever gotten. I wasn't trying to prove a point either. I did eat a good bit more than I usually do (but no dessert). I was really hungry because all I had eaten all day was my breakfast. I didn't do it intentionally, but I ate breakfast so late that I wasn't hungry for lunch. Then by dinner I was starving! I am considering it a lesson learned that I must follow the three small meal rule with healthy snacks in between. At least I am more aware now that it is something I have to watch even if I can't convince the doctors. Do I not understand the blood sugar numbers correctly? I thought anything above 140 (my meter even shows 129) was above the normal range. Are these high numbers okay because I'm taking prednisone? I hope someone here can maybe shed some light on this for me. Please don't be shy. If I don't understand the numbers correctly, please tell me. What can you make of this? Any help would be appreciated, Thanks.
Posted 8/13/2007 12:45 AM (GMT 0)
Hi--
I supposedly have metabolic syndrome which is a way of saying that I am developing diabetes and have liver involvemnt. The normal range is 80-120, though you can check the pamphlet that came with your meter to be sure. It will take a long time for your sugar to stabilize if you are or just were on prednisone because it alters the way your endocrine system works and your whole endocrine system has to switch back around. It could take a month or so after maybe, depending on your body. I don't think that a definite diagnosis of drug-induced diabetes is something that any doc can be sure of in your case, there is no test to weed it out, it may be just you and wishful thinking. A better diagnosis for you would be prediabetes or even diabetes as confirmed by a glucose tolerance test. In diabetes, your surgar is not always abnormal, especially as you are getting it, and if you are going to continue to take prednisone in your life and you've shown that your sugar does go abnormal, you would be better off with a regular diabetes diagnosis. This would get you your supplies and let the doctors treat you with the caution you may need, because you do tend to go abnormal with your blood sugar. It doesn't really matter why your sugar is abnormal, it still needs to be treated if it gets really bad, and docs need to know this could be a problem with you.

Most people are diagnosed with a glucose tolerance test and if you haven't had that, no one can tell if you are diabetic or not, random blood sugars and other blood tests are not accurate, despite what many docs think. My endocrinologist, who is also a diabetes doctor, told me that the only way to tell if you are truly diabetic is a glucose tolerance test and if you fail that, then you are diagnosed with diabetes or prediabetes based on a blood insulin test, which you should request from your docs to see if you are insulin resistant or not. This has to be done for you to get a proper diagnosis, otherwise they are just guessing.

My dads sugar frequently runs well over 200, 300 and he seldom notices, though his pancreas still works somewhat, he is insulin resistant though. For me, when I get only a little over 120, I start feeling really bad. I'm insulin resistant.

I take metformin because my sugar went to 180 during my glucose tolerance test and my blood insulin was very high. Metformin works well with hyperinsulinemia and it stabilizes my blood sugar at 100 no matter how much prednisone I get (I got some really big shots of it in the past).

I think you need to find another doc, due to the attitude, and probably focus less on the prednisone issue and more on whether or not you in fact have diabetes or insulin resistance in general, because you will likely be on and off prednisone, so whether it causes it or not, seems like a moot point in a way. It will also help you get the supplies you need. I have never heard of a restriction on blood sugar testing for medicare based on ICD9 codes (diagnoses) I know that medicare pays for whatever my doctor writes. Perhaps you might have better luck with the mail order people, they can communicate with the doctors office for you and get the right coding to get you what you need. I don't stick my nose in there too much, doctor's code things the way they need to be to get you what you need, everyone, including the people who work at medicare, know that the system is less than perfect and you have to fudge things sometimes so people get proper care.

I would think that you would want a regular diagnosis for this condition instead of one based on medication, since you have to take that medication fairly frequently and it may involve a nightmare of paperwork for the doctor, by having to refill it all out every time you take pred, as a totally separate condition.

Diet is very important and it is important to test not right after a meal but wait a little bit once in a while to see if the rise is just a jump or whether it stays high. Failing to eat is worse for diabetes than eating more frequently. Try googling some stuff on metabolic syndrome (prediabetes) and you will find some good information. I follow Atkins for my diabetes because my hepatologist wants me too and its the only diet where I lose weight. You will learn that certain foods are no-nos it seems, in virtually any amount, others might surprise you.

I understand a little about the doc, just because he has to code certain ways to be able to see you often enough and test you enough and most patients trust their docs with this so I'm sure, being the Godlike person that he is, or just really busy or having a bad day, he got snippy. He probably also liked the communication he had with your old rheumy who was in his practice and feels you have made a mistake that might give you worse care, or that you feel maybe the whole practice has problems and he's next. Who knows. Maybe he's had a string of problems lately. Who knows. I hate being talked down to and treated badly, fortunately I haven't had that for a while now, last time was when I needed neck surgery and no one believe me, until they realized it might be lymphoma. It wasn't, thank God.

On the other hand, I would consider switching PCP or getting a second opinion because he sounds like he doesn't know what he's talking about. My H1C is always normal because I am insulin-resistant (prediabetic--which means I take pills instead of insulin because my pancreas still makes insulin, too much in fact, then it will burn out and turn into regular diabetes and I will have to take shots). I would get a second opinion and explain to the new doc or even try to work with your rheumy, if he's understanding, to get a glucose tolerance test, your blood insulin tested, and a proper diagnosis instead of some temporary thing. Then you can always modify your amount of testing and treatment if need be between prednisone treatments. I just don't think anyone can prove or guarantee that it is just from prednisone, and if you mess with your blood sugar enough, you will develop regular all the time diabetes. I would also ask the second opinion doc about metabolic syndrome (prediabetes) and treatment with pills to stabilize your sugar.

Well, I'm sorry you had to deal with the bad attitude and crap from your pcp and that you are sick. I lose all focus when they do that too and I either get made or just let give in and end up leaving the office with no answers. I really think you need to get a real diagnosis based on adequate testing. Metabolic syndrome is not something to mess around with, if you have it, and you can prevent it from turning into diabetes if you get treatment and prevent damage to your organs and other problems. I hope you get this figured out and please let us know what the result of proper testing and diagnosis is. Sending good thoughts your way!
Posted 8/13/2007 5:07 PM (GMT 0)
Hi, Marji. Thanks for the great information and support. I knew the numbers I have been seeing while tapering the prednisone were high blood sugar levels. I also know from much searching and research, that the prednisone DOES effect your body's ability to manage your blood sugar. I am just ready to beat my head against the wall because these doctor's will quickly put you on these dangerous medicines, but then don't want to help you understand how they're effecting your body. They act like they don't understand when you explain problems you're having that I've read are well known to be caused by the prednisone. In my case, I just don't want this problem to be ignored and me end up with diabetes because of it. I have a leader in my local lupus support group that has diabetes that were drug-induced by the prednisone after taking it for only 9 mos. I have also been talking with him and that's what got me to checking into my own blood sugar numbers more (I have been on it for about a year and a half now). For a long time now, when the doctors in this one group I spoke of see a higher than normal blood sugar number they just say, "You need to try to get down on that prednisone."; and leave it at that. Well, if I'm having problems doing that I need help! Isn't that what I pay them for?

That glucose tolerance test that you've talked about has never been mentioned to me. I know abnormal blood sugar is nothing to play around with, I just wish I could get these doctors to give it attention. I still have an appt. week after next with my rheumy, so maybe he will take it more seriously. I will definitely mention that glucose tolerance test to him. Do you know if that test is altered by what you have eaten that day? I didn't know what an endocrinologist was. I looked it up and it seems like that type of doctor would be knowledgeable in lupus since those are the glands that are effected by it: (I know lupus effects at least the adrenal, pituitary and hypothalamus.)

I went back and listed the meds I'm on. Prednisone is the only thing I've been able to take so far that's helped. I had bad reactions to the Hydroxychloroquine, brand name Plaquenil, Chloroquine, and Nabumetone. I tried the Meloxicam for awhile too, but I couldn't tell that did anything. I'm so glad the Prednisone did help because at the time, my left lung was involved and my pleural membrane was 3/4's full of pleural fluid. I thought I was going to die! They did have to drain that fluid off, but it kept coming back so the Prenisone was started.

My PCP's attitude this time really surprised me. Like I said, I'm not sure exactly where it came from. I am just so tired of changing doctors. I thought I finally had just the combination I needed. I just hope I can get my rheumy to help me with this instead. I don't know of any other quality PCP's around here. I live in a small town and I like having my PCP here because I already have to go a long way for my rheumy and my lung doctor. When I don't feel good, it's a long way to drive.

Unfortunately, I'm slowly learning the diet nightmare that comes from blood sugar problems. I've never had to pay any attention to what I've eaten before, so it's a lot to take in. It is VERY SURPRISING! And not always in a good way!

I agree with you about a regular diagnosis for this. I thought that was just what I'd get when I shared what I'd found with my PCP. I guess I'll just have to go at it another way. I just appreciate your taking the time to help me with this. I'll let you know how it goes with my rheumy. I guess I'll wait until then to decide what to do next. It is no nice not to feel alone. I appreciate the understanding and not being talked to like I'm stupid. Thanks so much,
Posted 8/13/2007 5:50 PM (GMT 0)
If you haven't already, you might want to drop in on the Diabetes forum -- they probably have more ideas about how to get doctors to listen and what's normal or not than what we lupies might know....
Posted 8/13/2007 11:49 PM (GMT 0)
Thanks, Lynnwood. I think I might go there and just see what kind of response I get. It'll have to be in a couple days though, Tues. and Wed. are my busiest days of the week (chores and stuff). Any way to more clearly explain what I'm dealing with to the docs would be helpful. I think I speak pretty plain though. I'm afraid that not taking me as serious as they should sometimes comes from the way I look physically. I have had my feelings hurt many, many times since the car wreck. People are so quick to automatically assume when you have bad physical disabilities, you are mentally impaired as well. There are times when my mind may well be slow on some things due to my head injury, but it does not miss much! When he got me upset in that appt. for example, my brain just doesn't reply right away. It takes time "processing". I hate that part! I should probably be thankful for that part though, it does spare me the embarrassment of my temper (very bad)! I appreciate that idea though! Thanks again,
Posted 8/14/2007 3:21 AM (GMT 0)
Hi sharentrials,
You have to fast for the glucose tolerance test then they give you a glucose drink every so many hours and measure your reaction. I would demand this from someone, especially if you are dieting, because it can help them know what kind of diet you need to go on, really strict or not so much. The point of taking medicines like Metformin (glucophage), which is what I take, is to prevent the fluctuations of blood sugar and keep you from getting diabetes. Metformin is the current treatment of choice for metabolic syndrome with can cause serious liver problems (fatty liver) that recently they have found 1 in 4 people end up having to have a liver transplant, so its serious. I like taking metformin, it makes dieting easier and it is protecting my liver and pancreas and keeping my sugar straight at 100 at all times during the day, which is good. Diabetes is an autoimmune disease where the body attacks the pancreas, and it comes along with all the rest of the mess we have. So you may be stuck with it. The good news is that the diet will keep you looking trim and eating good, and the medication does protect not only the pancreas but the liver too, if you are on the right one.

I urge you also to get your blood insulin tested. Your PCP, rheumy, anyone can order this when you get bloodwork. Hyperinsulinemia (too much insulin) is a sign that your cells are insulin resistant and only diabetes pills and diet can fix this, but it is fixable and you don't need to go on to get full blown diabetes, though it sounds like thats where you are headed if they don't get you squared away.

I understand not changing. I would try to avoid him or maybe just go back and explain to him that you didn't mean to be a pain but you just don't understand much about what is happening and you are worried. If not, Maybe you can deal with another doc on this, explain to the new rheumy your other doc freaked out for some unknown reason and ask if he couldn't just order these tests you need to know for sure if you are truly diabetic. Prednisone is strong, but its not as bad as some of the really artificial stuff, theres some really horrible stuff out there and I've had to take it, so don't worry too much. I would be really frustrated about this too, because you don't really know why your sugar is high? Without more testing, especially the glucose tol and insulin, you wont ever truly know. I'd like to hear what happens and I really hope you get these two tests done, blood insulin is very important in finding out what type of diabetes you have and many docs don't think to run it and its cheap to run.
Posted 8/15/2007 10:54 PM (GMT 0)
Hi, Marji. Thanks again for the great info. you provided! I have made copies and am trying to make myself more knowledgeable about the tests you mentioned as I intend to try to get my rheumy to order them on my next week's appt. A nurse at my PCP's office called me a couple days ago to let me know that my urine test as well as the blood work he did both came back normal. I asked if she could leave a copy of those tests up front for me so I could take them to my rheumy's upcoming appt. Yesterday, I thought a little further and called back to my PCP's office. I spoke with a helpful girl at the front desk and asked if she could print me a copy of the actual appt. notes from last Thurs. so I could take them to my rheumy as well. I went by there this afternoon and got them both. After reading them, I believe the first thing that made him ill was my changing rheumy's again, this time to one NOT in his group. His notes also describe his explanation of why he felt I didn't need to be so concerned about my blood sugar numbers much better than how he bothered to describe them during my appt. My point is still the same though, I am seeing those higher blood sugar numbers VERY FREQUENTLY now that I'm tapering depending on what I eat. I have also just read more about lupus patients having problems controlling their blood sugar while taking corticosteroids, and the possible need for a medication like what you mentioned being used to help control it. Just wanted to let you know I am trying to follow-up on the info. you gave me, and also how much I appreciate you for it! Thanks so much,
Posted 8/16/2007 9:03 AM (GMT 0)
I would get an endochronologist, a podiatrist (foot specialist), and a new PCP. Yours sounds like a jerk and a serious health problem in the making. Blowing off blood sugars as nothing to worry about is stupid and could lead to a malpractice suit. You need a diabetes specialist and a foot specialist. Plainly and simply testing once a day is not enough. My husband's blood sugar is messed up. He isn't exactly diabetic but he is close. It runs in his family. Insist on good health care and fire doctors who provide less than good care. Yours sounds like he thinks you are a hypochondriac- trust me this kind of treatment comes from those who think you make crap up or are imagining or making it worse than it really is. I hate those kind of doctors. Personally I recommend a female doctor if possible. You know your body and darn it all blood sugars are nothing to screw with.
Posted 8/16/2007 10:28 PM (GMT 0)
Thanks, Redrose for the pep talk! I try to take this disease very seriously and help myself whenever possible. As I learned while recovering from my car wreck and head injury in '94, learning and getting involved makes you an active part of speeding the recovery. And I refuse to let this disease get the upper hand! Ignoring important indicators and early signs like high blood sugar numbers is just stupid! I will get someone else's help with this. I hope my appt. with my rheumy. next week takes care of it. Thanks for the support!
✚ New Topic ✚ Reply