So I moved back to where I used to live right before I was diagnosed, a very rural area in Northern California, and needed to connect with a new doctor. Unfortunately, I know enough about the "old" doctors who've been here for years and wouldn't trust any of them and there was only one new doctor in town. So I felt some pressure to make a relationship work as the nearest other options are an hour away over a winding mountain road.
Those of you who know me know that my philosophy of a good doctor is "one who doesn't bother me." I'm probably at the extreme end of the continuum in managing my own care and not wanting input from doctors. If I met one who knew a lot about type 1 and we could have a mutually respectful dialogue that would be great, but barring that unlikely scenario I just want someone who writes my scripts, is there if I have an issue of another kind and to give me referrals. To pretty much leave me to manage my own Diabetes.
So going into my appointment today I realized I tend to have a defensive posture with the medical profession these days, and tried to caution myself to be more open. I blew it at the outset with the nurse. When I told her I was a Type 1 diagnosed at 58 (initially misdiagnosed as type 2), she acknowledged that but said "they pretty much diagnose people that age as Type 2." I immediately responded with "that is a misdiagnosis, it's pretty much a completely different - autoimmune disorder. Afterwards I realized she might have meant that because when I told her that they realize now more type 1's are diagnosed as adults, she agreed and said something like "yes, that is the case recently".
Anyway, after that initial blunder I prepared myself for the doctor himself and he turned out to be fine. Not particularly forthcoming, but that's ok, I didn't want anything). He accepted my information, asked what was the highest my blood sugar went (I said these days it only occasionally goes into the 200s and I often know why and correct it right away), recommended an eye doctor (I've been bad, I hate going) and then recommend I start on meds to prevent kidney prevention, saying "all diabetics should be on them". I ignored the lack of use of type 1, but said I wasn't overly concerned since I'd been diagnosed late in life and didn't want to take something that would lower my blood pressure as I sometimes have problems with that. I said, "if you really feel strongly, I'll take it, but otherwise would prefer to hold off and just test kidney values regularly. (I'd brought recent labs). He said ok.
So, all in all, I'm quite relieved to have a doctor I can live with. My overly active imagination was picturing him saying something ignorant like "you can't be type 1 if you were diagnosed at 58" and me walking out the door! But I wondered how many of you type 1's take medication to prevent kidney damage?
I've been type I for about 25 years - now age 51. For about the last 15 years I've been on a really small dose of lisinopril as a preventive. It's kind of a pain because it's a really small pill that I have to cut in half. I remember my endo telling me at the time that research showed that it served to prevent damage with long term diabetes. But he also said that if it made me feel bad, we would discontinue it. My blood pressure has always been on the lowish side but I've never had a problem. My primary care doctor (an internist) told me that they really push lisinopril for diabetics now.
I think your approach is reasonable being that you were diagnosed late in life and have had problems with low blood pressure before.
I'm not aware of any evidence stating that "all diabetics should be on" ACE inhibitors/ARBs. If you have microalbuminuria or high blood pressure then it's clear that they are the best choice as a first agent. In the absence of these factors, I think it's a blanket statement that isn't true. There may be no harm in a low dose of one of these meds for "prevention" but again there's no evidence that I'm can think of that supports that use. Nice to hear you found a doc you can live with. Sometimes it's hard to be receptive to new recommendations, but it sounds like you did a great job!
I like the sound of your doc. Sounds like someone who will listen to what you have to say. I know that prescription of an ACE is very common and is considered the gold standard. The small doses used for prevention will not lower your bp hardly at all. It's not that effective a bp med - it mainly seems to prevent kidney damage. I was put on captopril many years ago and I am convinced that it slowed my already existing kidney damage. Don't forget that by the time things show in the labwork, there may already be significant kidney damage. I personally think that if your bp can handle it, it is better to be safe than sorry. I understand not wanting to take pills, but there is a ton of evidence now that these drugs can actually prevent damage. You don't want to have kidney problems, believe me.
I am on an ACE inhibitor, but was taking it for many years before diagnosis for high blood pressure. It has no side effects at all on me. When I was diagnosed, my endo. was glad to hear I was already on
an ACE inhibitor.
Hi Zoe: I hope you are enjoying your return to the hinterlands of NorCal! How are you? I have to say, it sounds like your doctor appt went incredibly well! Good for you. I am on lisinopril, and have been for about 8 years. Unlike my usual strategy, I didn't do extensive research on this, so I can't cite sources. But I have read and I have been told by a number of doctors whom I trust that taking an ACE inhibitor is kidney-protective. So I do. I have had low to normal blood pressure all my life, and the low dose of lisinopril does not give me any problems. Hope this helps.
Ive had a couple of dr's prescribe ACE inhibitors for "preventitive" reasons only. I've attempted taking it, but I've always stopped, my BP has always been on the low side and after 28 years it still is on the low side, and my kidney function is perfectly normal. My new endo isn't pushing it so I for one dont like to take more meds than what I absolutely have too. IF I started having problems with BP, or started having some slight problems with my kidney function maybe. But I just dont like the way the ACE inhibitors make me feel.
I'm T2 but I'm on a low dose of ramipril for preventative measures. I have had a bad response to this sort of medication in the past but with this low dose, taken after my evening meal so that any bad reaction will be over before I get up in the morning, I
have been fine.
I take Lisinopril. Partially for kidneys but I "broke up" with the doctor who'd rx'ed that a long time ago and stopped, then got back to another doctor who got me back on it. At that time, I was bigger (as I've mentioned, hee hee...) and my BP was oozing up to a peak of perhaps 150/100 so it was "borderline" and seemed to have helped with that. That was maybe 2004-5-6, somewhere in there. I've pretty much taken it since then, even though my BP has sort of gotten back to normal, usually around 115/ 70 or so. Although a couple of weeks ago, I chopped the end of my finger off making breakfast and, while lounging around waiting for the convenient care clinic to open, I had the bright idea to take 2 and my BP was 97/70, although it didn't seem to stop the bleeding.
I was gonna say too that "yes, that is the case recently" isn't exactly a "blunder" since until maybe 40-50 years ago they probably just wrote off people dx'ed @ 58?
I take 10 mg of Diovan solely for "kidney" protection every other day,If I take it every day along with Felodipine., my blood pressure medication, my BP gets too low. I cannot take the Diovan at all min the summer,.The medications, along with the loss of sodium from perspiration and more time spent working out ; can put my BP in the danger level .I have sometimes almost passed out when my blood pressure got dlowered to 80/55;or in that range.. I have to eat some olives ,pickles, or a few potato chips to get my sodium level up when this happens.
My endo , who I trust and have been with for 9 years, says that I need the snall amount of Diovan for "kidney protection", though I have no signs whatsover of kidney disease. I do fit the risk factors: Diabetes, Middle-aged, African -American; so I will take the small dose, adjusting the dosing schedule as needed. iMy blood pressure, using the Felodipine alone, stays at about 120/80 range, so I do not need it much lower. Acid, your lowered blood pressure is admirable. It probably is due to a combination of the meds and your daily athletic endeavors
Zoe, I am glad you found a doctor that you can work with. That is so important.
Oh, I agree, AR, that was the comment that made me think I'd underestimated her. I was restraining my usual annoying habit of splitting hairs by not specifying, "it isn't that more people get type 1 later in life than used to be, but that more are recognized as such".
Thanks everyone, sounds like about evenly divided on the ace inhibitors. I think I'll stay in the "not going to take any more meds than I absolutely need to" camp due to low bp and to my age at diagnosis, with so many less years to accumulate damage than you DIC's.
:::Waving at Melitta::: I'm doing great, my friend! Looking out my "triangles" at the woods surrounding my Dome House. Living in a small town also brings out the nicer side of Zoe - if you flip somebody off driving chances are you will bump into them at the market the next day! Keeps me from getting too grumpy!
I take 50mg Losartan (generic for Cozaar), I have done so for years, with no side effects. I used to take 100mg but my levels of B? went up so the doc halved it. After 50 years, they say if I have no signs of kidney or liver damage yet then I'm probably not going to develop any, which is reassuring.
Zoe. Glad you fond a sympathetic doc, my PCP is great too, when I went for an annual check, he just said "I don't suppose you have changed your mind about Statins?" I said "No" & that was it.
Oh, I made it up, Brunetta - it's "diagnosed in childhood". I was talking to someone about the difference in the experience of people diagnosed as children vs diagnosed in adulthood and felt I needed an acronym! Maybe DAC's (diagnosed as children) would be less dangerous...lol. Actually that might be the acronym I used originally!
A few years ago my endo and I decided that I should give Lisinopril a try, since BP meds are supposed to be part of the standards of care. I started on the smallest dose available and got extremely low BP readings. I started cutting that pill in half and still had low readings like 75/45. I was dizzy when I leaned over. I started getting the dry tickle cough that can be a side effect of these meds. The cough kept both me and my husband awake at night. So with the blessing of my endo, I quit that med. I did try a different class of BP meds, but both my internist and endo thought that the low dose I was taking probably wouldn’t do much of anything.
My endo indicated that if ever I showed any kidney problems, I could start BP meds which would help me at that point. At the same time that this was going on, there were some studies coming out saying that if you’ve had diabetes for 25 years and don’t show signs of kidney damage, the odds are that you won’t ever develop kidney problems. I’ve had Type 1 for 35 years and my kidney tests are normal. So I still choose to not take BP meds. My doctors are OK with that.
As far as I can tell, all of these studies are done on Type 2’s where high cholesterol, high BP, etc. are part of the disease process. I really wish that there were more studies on people with Type 1, especially Type 1’s on intensive control.
I don’t think that there is any universal right or wrong on the decision to take additional meds as protection against potential side effects. In general I’ll do whatever my docs want me to do and right now we’re all OK with no BP meds. That doesn’t mean that some time in the future, a different decision might be made.
I am curious which kidney prevention medication he wanted to put you on. Thanks for your story and update. Here we got a bad (protein in urine) test result back and take 5mg lecinipril, which we had been prescribe 10mg for heart protection in June. (Went in because of Ketoacidosis and came out Type 1). Was disappointed by that, but since the HgbA1C was 6.0, it was semihappiness since we wanted to be in the 5% club, and it was so close yet barely not there. So which med was it, Zoe?
I wrote the above in a hurry, I've just gone back to check & it wasn't one of the B vitamins, but my Potassium level that was too high, after halving the Cozaar dose it went back down below the maximum & has been fine ever since.
