Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Manager of Marketing at T1D Exchange.
When I asked, “Why?” despite no evidence of cholesterol problems at yearly lab tests, the answer was, “It’s a preventative measure (strokes, heart attacks) because you have diabetes.” Same question, same answer re: ACE inhibitor, though no signs of high blood pressure, nor kidney damage. Both pills are only 10 mg, free, minimal side effects. Supposedly these drugs won’t interfere when you’re trying to get your exercise heart rate up for aerobic benefit. For some of us baby aspirin is no longer recommended. See online articles JAMA 21 June 2021 and BMJ 13 Jan 3021. These articles convinced my dr to cancel his Rxd baby aspirin.
I continue taking 81 mg of aspirin every day. I have taken every new statin given me, although I have had muscular problems that worsen with each “better” statin. I even lost the feeling in my fingers with my last prescription. If the only tool you have is a hammer, every problem is a nail.
All my cholesterols are perfect and no other indications of any heart problems. I’m active, weight good, BMI good. So if any doctor recommended statin I’d stop seeing that doctor.
I was on statins briefly, but now I refuse them. With LADA, my blood sugar is already unpredictable. Statins increase insulin resistance and decrease insulin production. They also cause muscle pain. Why make things worse?
The first time I met my Endocrinologist, he recommended that I start on a statin a preventive measure. I am in great shape, a runner. I have excellent lipid numbers, low cholesterol, etc. No heart issues. I refused to take the statin. That was about 5 to 7 years ago. I’m still not taking statins. My philosophy is to not take any drugs unless it is NECESSARY. Almost all drugs have negative side effects.
I do take a statin with no noticeable side effects. I have bee on that program for many years, but I have had moderately bad LDL throughout. T1D seems to be an additional risk factor but not the driving reason for my statin
I’ve been put on 4 different statins in the time I lived in Alabama, from 1996 to 2018. Then when I returned to Minnesota and saw my Endo at the local Clinic, I mentioned my leg cramps and how much the cramping in my legs improved after my statin prescription ran out and I had stopped taking them for about 3 months. He said muscle cramps is a very common symptom to most statin allergies so he added all statins to my list of known medication allergies that until statins were added was previously only Acetaminophen, aka Tylenol.
I wish my PCP ( it isn’t the Endo that Rx’d the statins – probably cuz the PCP did). would hear me about the cramps: full body cramps. Heaven forbid I should try for a god long, first thing in the morning stretch. Even changing seeping positions can trigger them, I have to get out of bed and do plies (former ballet dancer here) to make them go away.
On statins 25 years. First to decrease cholesterol which was around 180. Now my cardiologist and intervention specialist both require continuing and larger dose of this drug. Fortunately it appears I tolerate this ok.
Been taking statins for years which brought a not-so-high cholesterol down to acceptable levels. I thought this would be good for my heart, but as it turns out I had a heart attack in June, with 100% blockage on one artery and 90% in another. Four stents later I’m wondering why we worry about cholesterol if lowering it doesn’t seem to keep the heart from having issues..
I am not sure. I have been T1D for 50+ years and have been taking Statins for many of those years. I do know that my PCP wants my cholesterol levels lower than typically recommended due to my T1D.
I briefly took several different statins years ago. Due to the negative side effects I refuser to ever take them again. My Endo My endo and My cardiologist keep harping on me to take them. My ldl is not that high, like around 130, overall cholesterol is around 170. I had all the cardiology test and all is clear, so I am ok with not taking them. They say that it “saves lives”. but the truth is it only saves lives in about 1% of cases.
Same here. My cholesterol WITHOUT statin runs between 135 and 150. My HDL in the high 80’s. My endo and primary care push me to take a statin. Checklist standards of practice?
My doc prescribed a preventative statin years ago, I only took them for a couple weeks, had terrible leg cramps. Now my cardiologist says I shouldn’t take them as medicine has advanced and there are now better or other options. (I don’t know what that means, or why he said it, I was just happy to not get leg cramps after stopping!)
On Statins since the Mid 80’s and no longer having issues with Meds, for awhile cramping was severe with some but started with CoQ-10, currently Total CHOL 166, HDL 77 and LDL 67
I took statins for about a year. My hips and legs were very stiff but I kept taking them until one of my leg muscles(quadricep) actually ripped. So I stopped all statins about 10 years ago.
I had the same problem with the statin I was taking. My Cardiologist (G-d Bless Him) started me on Livalo which has brought my numbers down to around 150.
Yes, but after trying every version on the market with debilitating side effects, I’m now taking a non-statin drug that has effectively lowered my elevated cholesterol levels.
Yes, and I was reluctant, but am a compliant patient. I take 10mg daily with CoQ10 and cholesterol numbers are excellent. Sometimes the lower dosage of a statin are more tolerable without the side effects.
I put other because I am unsure. I was put on Statins very early on but I don’t know if my cholesterol was high at the time. My family has heart disease and I have tried going off statins recently and now my numbers clearly rise too high. Ezetimembe helped but not enough. My current Endo is also a lipidologist and insists I should stay on statins although he put me on a different one.
I answered “no” because the reasons I take it are because high cholesterol levels and a history of heart disease in my immediate family. 60 years with TD1.
It was recommended that I take a statin when my cholesterol numbers were slightly rising – and I have been on them since I was in my 30’s (about 15+ years after being diagnosed, in my teens, as having T1D). Since I’ve been on the statin medication (25+/- years), my cholesterol numbers have remained in the normal range.
I’ve been on a statin for at least 30 years .. never had high cholesterol. My numbers are 138 total, 92 HDL. Triglycerides are 39. In spite of having great numbers I still had a heart attack 3 years ago and now have a stent. The surgeon did say my arteries look good otherwise. Will stay on the statin! No issues with it.
I was on one and an ACE inhibitor, for preventives, when I had my first CVA. I’ve always had low blood pressure and awesome lipid number’s. Once I was correctly diagnosed, 6 years later, I was taken off the ACE inhibitor to try and keep my BP high enough, and eventually the statin due to side effects. I’m currently only on 81 mg of ASA, per my neuro team, to keep my brain graphs open, from my Moyamoya surgeries.
Long-haul T1D plus a family history of heart disease (My dad had several “incidents”and ultimately died of heart disease.) equal a no-brained for me: I’ve been on statins since my early 40s.
Yes, my primary recommended it but my cardiologist said do not take it. There can be side effects to statins and my cholesterol is very good so don’t chance it.
My endo put my on the ‘cardiac’ regimen (statin, blood pressure “pril” and low dose aspirin), nearly 30 years ago. I’ve never had high BP or high cholesterol. He said research showed an 80% reduction in long-term complications for T1Ds if they were on the cardiac regimen. It’s worked very well for me so far (55 years of T1D since I a child).
It has been discussed, but I have refused because I my cholesterol levels are WNL range. I do take an ARB as a kidney protectant and I practice healthy lifestyle choices. My preference is to maintain my health with balanced healthy eating to meet nutritional needs, and hormone replacement therapy – like insulin, thyroid, GLP1 – with as little other pharmaceutical interference as possible.
I take atorvastatin 20 mg twice a week because I couldn’t tolerate the effects of daily dose of a different statin medication. The endocrinologist who changed my statin Rx said there was clinical research done which confirmed effectiveness when taken 1-2/week. My cholesterol was around 180-200 when I started therapy and on this dose it’s 150 with good HDL/LDL
“other”
My endo suggested both aspirin and a low dose of a statin because while my cholesterol is good, my bad cholesterol is slightly elevated and heart conditions are in my family.
When I asked, “Why?” despite no evidence of cholesterol problems at yearly lab tests, the answer was, “It’s a preventative measure (strokes, heart attacks) because you have diabetes.” Same question, same answer re: ACE inhibitor, though no signs of high blood pressure, nor kidney damage. Both pills are only 10 mg, free, minimal side effects. Supposedly these drugs won’t interfere when you’re trying to get your exercise heart rate up for aerobic benefit. For some of us baby aspirin is no longer recommended. See online articles JAMA 21 June 2021 and BMJ 13 Jan 3021. These articles convinced my dr to cancel his Rxd baby aspirin.
I continue taking 81 mg of aspirin every day. I have taken every new statin given me, although I have had muscular problems that worsen with each “better” statin. I even lost the feeling in my fingers with my last prescription. If the only tool you have is a hammer, every problem is a nail.
All my cholesterols are perfect and no other indications of any heart problems. I’m active, weight good, BMI good. So if any doctor recommended statin I’d stop seeing that doctor.
I was on statins briefly, but now I refuse them. With LADA, my blood sugar is already unpredictable. Statins increase insulin resistance and decrease insulin production. They also cause muscle pain. Why make things worse?
No. I was prescribed statins because I had high levels of LDL cholesterol present … and still do have after 40+ years of taking statins.
The first time I met my Endocrinologist, he recommended that I start on a statin a preventive measure. I am in great shape, a runner. I have excellent lipid numbers, low cholesterol, etc. No heart issues. I refused to take the statin. That was about 5 to 7 years ago. I’m still not taking statins. My philosophy is to not take any drugs unless it is NECESSARY. Almost all drugs have negative side effects.
I do take a statin with no noticeable side effects. I have bee on that program for many years, but I have had moderately bad LDL throughout. T1D seems to be an additional risk factor but not the driving reason for my statin
I’ve been put on 4 different statins in the time I lived in Alabama, from 1996 to 2018. Then when I returned to Minnesota and saw my Endo at the local Clinic, I mentioned my leg cramps and how much the cramping in my legs improved after my statin prescription ran out and I had stopped taking them for about 3 months. He said muscle cramps is a very common symptom to most statin allergies so he added all statins to my list of known medication allergies that until statins were added was previously only Acetaminophen, aka Tylenol.
I wish my PCP ( it isn’t the Endo that Rx’d the statins – probably cuz the PCP did). would hear me about the cramps: full body cramps. Heaven forbid I should try for a god long, first thing in the morning stretch. Even changing seeping positions can trigger them, I have to get out of bed and do plies (former ballet dancer here) to make them go away.
On statins 25 years. First to decrease cholesterol which was around 180. Now my cardiologist and intervention specialist both require continuing and larger dose of this drug. Fortunately it appears I tolerate this ok.
I have low cholesterol, but I take a statin as a result of two stents. Cholesterol is one marker – but diabetes is the overriding marker.
Well, I’ve been on a station for years and my cholesterol has been great. I honestly don’t know what would happen if I stopped
Don’t know why my answer posted under this question.
Been taking statins for years which brought a not-so-high cholesterol down to acceptable levels. I thought this would be good for my heart, but as it turns out I had a heart attack in June, with 100% blockage on one artery and 90% in another. Four stents later I’m wondering why we worry about cholesterol if lowering it doesn’t seem to keep the heart from having issues..
I am not sure. I have been T1D for 50+ years and have been taking Statins for many of those years. I do know that my PCP wants my cholesterol levels lower than typically recommended due to my T1D.
I briefly took several different statins years ago. Due to the negative side effects I refuser to ever take them again. My Endo My endo and My cardiologist keep harping on me to take them. My ldl is not that high, like around 130, overall cholesterol is around 170. I had all the cardiology test and all is clear, so I am ok with not taking them. They say that it “saves lives”. but the truth is it only saves lives in about 1% of cases.
Same here. My cholesterol WITHOUT statin runs between 135 and 150. My HDL in the high 80’s. My endo and primary care push me to take a statin. Checklist standards of practice?
.
My doc prescribed a preventative statin years ago, I only took them for a couple weeks, had terrible leg cramps. Now my cardiologist says I shouldn’t take them as medicine has advanced and there are now better or other options. (I don’t know what that means, or why he said it, I was just happy to not get leg cramps after stopping!)
On Statins since the Mid 80’s and no longer having issues with Meds, for awhile cramping was severe with some but started with CoQ-10, currently Total CHOL 166, HDL 77 and LDL 67
I’ve been taking a statin for many years, long before my T1D diagnosis.
I took statins for about a year. My hips and legs were very stiff but I kept taking them until one of my leg muscles(quadricep) actually ripped. So I stopped all statins about 10 years ago.
Daniel,
I had the same problem with the statin I was taking. My Cardiologist (G-d Bless Him) started me on Livalo which has brought my numbers down to around 150.
Yes, but after trying every version on the market with debilitating side effects, I’m now taking a non-statin drug that has effectively lowered my elevated cholesterol levels.
May I ask what an alternate medication to a statin would be? I’d be interested in looking to see if it might work for me. Thanks!
I’d love to see the answer to MC’s question. The body cramps from statins for me are debilitating
I marked “Other” because I do take a statin, but it is because of high cholesterol.
Yes, and I was reluctant, but am a compliant patient. I take 10mg daily with CoQ10 and cholesterol numbers are excellent. Sometimes the lower dosage of a statin are more tolerable without the side effects.
Other, started statins because of my cholesterol levels. Although I suspect my hcp would have recommended one regardless.
I put other because I am unsure. I was put on Statins very early on but I don’t know if my cholesterol was high at the time. My family has heart disease and I have tried going off statins recently and now my numbers clearly rise too high. Ezetimembe helped but not enough. My current Endo is also a lipidologist and insists I should stay on statins although he put me on a different one.
I answered “no” because the reasons I take it are because high cholesterol levels and a history of heart disease in my immediate family. 60 years with TD1.
It was recommended that I take a statin when my cholesterol numbers were slightly rising – and I have been on them since I was in my 30’s (about 15+ years after being diagnosed, in my teens, as having T1D). Since I’ve been on the statin medication (25+/- years), my cholesterol numbers have remained in the normal range.
I’ve been on a statin for at least 30 years .. never had high cholesterol. My numbers are 138 total, 92 HDL. Triglycerides are 39. In spite of having great numbers I still had a heart attack 3 years ago and now have a stent. The surgeon did say my arteries look good otherwise. Will stay on the statin! No issues with it.
I was on one and an ACE inhibitor, for preventives, when I had my first CVA. I’ve always had low blood pressure and awesome lipid number’s. Once I was correctly diagnosed, 6 years later, I was taken off the ACE inhibitor to try and keep my BP high enough, and eventually the statin due to side effects. I’m currently only on 81 mg of ASA, per my neuro team, to keep my brain graphs open, from my Moyamoya surgeries.
My Internist had me on statins for a long time for a long time until I developed an allergy to them. Now I try to keep it down with diet alone
Long-haul T1D plus a family history of heart disease (My dad had several “incidents”and ultimately died of heart disease.) equal a no-brained for me: I’ve been on statins since my early 40s.
Yes, my primary recommended it but my cardiologist said do not take it. There can be side effects to statins and my cholesterol is very good so don’t chance it.
OTHER: Mine was because of cholesterol levels not regardless just because I was diabetic.
My endo put my on the ‘cardiac’ regimen (statin, blood pressure “pril” and low dose aspirin), nearly 30 years ago. I’ve never had high BP or high cholesterol. He said research showed an 80% reduction in long-term complications for T1Ds if they were on the cardiac regimen. It’s worked very well for me so far (55 years of T1D since I a child).
It has been discussed, but I have refused because I my cholesterol levels are WNL range. I do take an ARB as a kidney protectant and I practice healthy lifestyle choices. My preference is to maintain my health with balanced healthy eating to meet nutritional needs, and hormone replacement therapy – like insulin, thyroid, GLP1 – with as little other pharmaceutical interference as possible.
I take atorvastatin 20 mg twice a week because I couldn’t tolerate the effects of daily dose of a different statin medication. The endocrinologist who changed my statin Rx said there was clinical research done which confirmed effectiveness when taken 1-2/week. My cholesterol was around 180-200 when I started therapy and on this dose it’s 150 with good HDL/LDL
Yes
“other”
My endo suggested both aspirin and a low dose of a statin because while my cholesterol is good, my bad cholesterol is slightly elevated and heart conditions are in my family.