I can’t take statins. I have normal cholesterol levels but supposedly not for diabetics with heart problems.
The doctors can’t seem to agree about the importance of cholesterol levels. I have read books and articles pro and con.
I am scared of trying these meds, does anybody have any experience with them?
I don’t have experience with the injectibles but:
Has your doc tried very low dose statin plus Zetia, or Zetia by itself? (Zetia generic is ezetimibe.)
I have struggled to getting target LDL levels my whole life. Adding Zetia was the magic ticket to hitting my target:
Thanks Tim. Zetia gave me neuropathy. After never having had any kind of neuropathy I was upset. I found out that is is listed as a possible side effect. As soon as I stopped taking it, the burning stopped.
Next I tried a tiny amount of the generic Crestor and it worked but gave me neuropathy. When I stopped it the neuropathy did not go away until Marie told me about a supplement that helps with neuropathy. After taking it for a few weeks the neuropathy vanished.
I think @Thas was using pks9s. Hopefully he’ll have something to share with you.
If you haven’t tried Lipitor/Atorvastatin it might work for you. Low doses made a difference for myself and my husband.
Thanks Tapestry. I did try either Lipitor or the generic or both. I can’t remember the specifics but it either affected my muscles or raised my liver enzymes. I think I have tried them all over a 10 yr period. I tried Pravastatin 3 times. I couldn’t get out of the car without bad muscle pain.
There’s a statistical concept called “number needed to treat” or NNT that could be helpful in your situation. It simply discloses the number of people that need to take the medication in order to prevent one adverse event. Here’s a site with an introductory video about the concept.
If the number, for example is 1000, then the odds are in your favor that your risk of not taking the med is very low. An NNT of 1000 means that 1000 people would have to take the med to prevent one adverse event. If the number is 12, then that risk is much more elevated.
NNT is an accessible way to analyze these kind of issues and is easily understandable by most patients. Often considered at the same time is the rate of side effects. If the side-effect rate is 1 in a 1000, then risk is very low. If 1 in 10 then that risk rises dramatically.
So, if the NNT is 1000 and side-effect rate is 1 in 10 then that makes the treatment much less attractive. Alternately, if the NNT is 10 and the side effect rate is 1 in a 1000 then that argues for taking the med as the risk is favorable.
Unfortunately, as most of the statin and other cholesterol lowering med studies are financed by Big Pharma, they will often conduct a “run-in” phase of the study where people who experience side-effects will be screened out before the study formally starts. I believe this “thumb on the scale” tactic is disingenuous and misleads more casual readers of the medical literature.
So, natural follow-up questions to a doc who cites a study to support use of a new med is this: “What is the rate of side-effects?” and “Was there a run-in period that eliminated people with immediate side effects from the study cohort?”
My experience with my cardiologist is that I was the one who raised the NNT idea. He was familiar with it but did not offer much comment. I’ve read elsewhere that many docs do not include NNT statistics in their discussion of heart disease with their patients.
Did you watch the video link that @Laddie provided up-thread? I learned a lot about micro-vascular disease, something I have have had little knowledge about before your raising the issue. I was only familiar with the term in the context of retinopathy and nephropathy. The eyes and kidneys include very small blood vessels.
I have tried 3 statins, all caused me pain in my hips (never had hip pain before). I was then put on Zitia and after a couple weeks also got hip pain. Note: I’m 36 active and exercise.
My doctor now wants me to try the injectable cholesterol medication but I’m undecided about it.
I’ve noticed in just the last 5 days I stopped taking Zitia my joint pain is fading away and in general I’m feeling better/stronger.
So far taking cholesterol medications make me feel 20 years older. I feel worn out and stiff when taking them.
I’m starting to think for some people just lowering the LDL causes the symptoms not so much the medication side effects.
After doing a lot of reading I’ve learned LDL (bad) cholesterol is important and needed to live. I don’t doubt lowering it reduces the potential for build up in blood vessels over time. Basically LDL carries lipids (fats) out to the body to use in building cells, HDL carries it back to the liver to be removed from the blood stream. My thinking is some people are more sensitive to lower LDL than others. Also I think your overall activity level effects that balance.
I started looking for trials studying those who exercise and take statins. It looks like statins cause your muscles to repair slower (Maybe because there is less LDL available for repairs?).
For my self I’m trying to decide what is better for my long term health.
I did read trials about the injectable medications and it looks like the side effects were very minimal. If I have to try them I will, I would expect I’ll get more joint pain but I don’t know yet.
Also my doctor tried to get me approved for injectables and the insurance company sent me a letter that you have to be at least 40 to qualify for them. For now maybe the decision is made for me.
I have seen something similar to NNT before, and tried to point that out to the cardiologist yesterday, but he doesn’t have much patience for these kinds of arguments against taking an LDL lowering agent. I believe the NNT explanation and this is just one of the reasons I don’t want to take a medication.
If I could easily tolerate a statin, I would take one though. The cardiologist said that we all die, but it is his job to help us all live as comfortably as possible. I didn’t get a chance to respond that taking a med which makes me feel bad, goes against this goal.
I was very grateful to Laddie for the info she sent yesterday. I didn’t have high blood pressure when pregnant and have no angina. I imagine the dull ache that I have in my chest area is from costcochondritis because of my two falls. I have had this a few years ago and it lasts for awhile. The pain is much less when my clothing is not restrictive.
The plan now is to get through the cancer check. Find out why I am anemic, find the correct explanation for a low sodium level, and see if I am still fatigued. My blood pressure with meds runs anywhere from 115/60 to 190/80 when severely stressed. I want answers for that. Most of the time it is below 130/65. I hadn’t passed out from low blood pressure in 3 yrs until the recent treadmill episode.
If I don’t get answers to these questions or if I do develop angina, I will go to a heart center somewhere which tests for microvascular coronary artery disease. My eyes still show no signs of retinopathy and my kidneys seem to be working well according to bloodwork.
Right now I don’t really feel Ike I can trust my body and am worried. I am feeling better though.
Thanks for the information
Chris, you seem to react to statins much like I do. Is your LDL high? Is there a reason for you to be taking a statin?
Please let me know if you try the injectables although it sounds like it will be a few years until you can.
I did have to get two stents after living for 50 yrs with type 1. My LDL was a bit under 200 and my A1c was 4.6. I have no idea if taking a statin lowering med would have prevented my needing stents. I have never had any neuropathies that I am aware of, just the need for stents from out of the blue.
Good luck to you,
Here are some posts from @Thas about his experience with psck9s. I don’t know if they are in chronological order or not.
At an appointment with my internist in July, I agreed to start statins but not at a full dose. I was tired of getting nagged and also had read a couple of articles saying that I really should take them as a T1. I am not totally on board with the decision and seem to be able to manage 2 pills per week. When I went to 3 pills per week, I got immediate digestive side effects as I had with previous statin trials. Does twice a week give me any benefit or risk? I don’t have a clue. I’ll probably switch to 1/2 pill every other day.
But more interesting, my internist mentioned that people with Type 1 tend to get more diffuse plaque/inflammation than Type 2’s and it is not as easily diagnosed as blockages that are more common with other populations. Reading this thread makes me think that he was referring to microvascular damage.
The one thing I have repeatedly read is that those of us with Type 1 have a poorer prognosis after a cardiovascular event than Type 2’s. It’s the inflammation/autoimmunity component of Type 1. This recent article ties the autoimmune response to higher A1c’s, but I still think it is an important consideration for even those of us with good A1c’s.
Thanks Tapestry, this thread is very helpful to me. I appreciate you finding this thread for me. I do wonder how low is too low since the body and brain do need LDL. Numbers under 70 seem to low to me, but I really have no idea what I am talking about.
Interesting that I am needle phobic too. Insulin shots and testing doesn’t bother me in the least, but I have to be in control. A new type of shot freaks me out.
So does this mean that the damage happened because of an A1c of 10 close to 40 yrs ago? I haven’t had an A1c over 7 in 40 yrs and I haven’t had an A1c over 5.6 in almost 20 yrs. I had an A1c in the 4’s and very low 5’s for 11 yrs. All the strict control didn’t make up for the lack of control when urine testing?
Sorry, getting rather emotional over this. Didn’t sleep over 3 hrs last night, so had trouble processing the article.
I very much appreciate what you are finding Laddie. Thanks very much.
Taking a tiny dose of a statin really brought down my LDL but I still got terrible side effects.
You’re welcome!
Except for what I’m told by doctors, I’m not sure how low is too low. They wanted my LDL under 50 and I got it to 49! It was short lived though, the following three months my LDL was back up to 78. It’s currently 69. Both the 49 and 78 were during the days I was ultra low carb (20ish a day) - keto and 10 mg Lipitor. My family doc did say that the numbers were variable and that’s the only reason they fluctuated the 29 points. The cardiologist gave no explanation between the two test values. And, neither has asked me to get it below 50 again.
Best of luck to you in achieving your goals for improved cholesterol, with whatever path works best for you!
If you are having adverse reactions to statins, Marilyn, stay away from them at all costs. A few years ago, my cholesterol was “borderline” high, so my End put me on simvastatin. Big mistake! While it helped my numbers a bit, I soon started to ache and get weak. I was diagnosed with dermatomyositis (where my immune system was attacking and destroying my muscles). I have never ached so much in my life and almost died. Later I learned that a statin COULD be a trigger to dermatomyositis. I cannot conclusively say that the statin caused my DM, but I was smart enough to drop it immediately. I will never get rid of the DM and will live with the consequences of it for the rest of my life. I just want to warn others with diabetes that a statin COULD lead to other effects that I would not wish on anyone. If you have had a bad history with statins, stay away from them all.
Since starting on the lowest dose of a statin about a year ago, my LDL has consistently been below the lower limit of normal according to the lab I use. I just had it checked last week and my LDL was 1.19 mmol/L, which is 46 mg/dl. My GP typically calls me if he sees anything alarming in my test results, and since he didn’t call, I assume it’s fine. I’m seeing a cardiologist in two weeks, so will see what they think. My result before this was 1.23 mmol/L (47 mg/dl) and my endocrinologist and cardiologist both thought it was great.
I’m going to ask if I can take half a pill a day (so I’d be on half the minimum dose) not because of side effects, but because my HDL has dropped to 1.3 mmol/L (51 mg/dl). Even though that’s still considered good, my HDL cholesterol always used to be at 1.6 mmol/L (61 mg/dl) and above. Since my LDL has room to come up and still be good, I’m thinking if I can take the half dose and bring both LDL and HDL up that would be good.
I’m in my 30s, though, so I don’t know whether this makes a difference in how the body is able to function with lower levels of cholesterol.
I hope you’re able to find a solution to lowering your cholesterol.
I am so sorry that this happened to you SherryAnn. I had one cardiologist who thought that the side effects I had experienced were all in my head. Needless to say I only saw him once.
I don’t think enough of us report our side effects to the FDA, so the doctors don’t hear about the problems. I have the papers here and will soon be sending them back. I also had long talk with a pharmacist from the FDA. I don’t know what else I can do. Did you report your experiences to them?
No, I did not even know that I COULD report my experiences with the FDA. If you Google “statins and myositis,” though, you will find that I am far from alone in suspecting that statins might have helped set off my dermatomyositis. I am sure that the FDA knows all about it, but so far there are no definitive studies to prove my suspicions.
My cholesterol is on the high side of normal, so I am not going to do more than to eat sensibly and exercise. When one doctor had a fit about me not being on a statin, I told him that I have been diabetic for 53 years, have thyroid problems, and have dermatomyositis. I don’t think that cholesterol is going to be the primary health problem that kills me someday. 
It’s an interesting article you reference there. My take-away is that even with good A1C’s there is still a substantial component of CVD risk in T1 that seems unrelated to A1C. I take this into account with my other risk factors for CVD (including long family history in males in my family) and now that I’m in my 50’s, I have gone as far as pre-emptively seeing a cardiologist each year for stress tests.
The inflammation angle is an interesting one but I’m not sure it gets T2’s off the hook at all. For example Frozen Shoulder is common in both T2’s and long-duration T1’s, and of all the things I’ve ever had I know for sure that’s the most obvious example of inflammation I’ve ever experienced. Also note the published literature says that risk of Frozen Shoulder seems unrelated (or even anti-correlated) with A1C.
Frozen shoulder is linked to both T1 diabetes and thyroid disease, so I would assume there’s an autoimmune aspect, since those are two highly co-morbid autoimmune diseases. Perhaps at least some cases of frozen shoulder are triggered by a similar autoimmune process.
That’s also consistent with an inflammatory process being a risk factor. For what it’s worth, some think that statins work not by having an effect on LDL but through anti-inflammatory effects, and no one actually knows for sure the mechanism through which their cardioprotective effects occur. People assume because they both lower LDL and decrease cardiac risk that those are connected, but that’s all correlational. Might well be that for folks who don’t tolerate statins well, other avenues to decrease inflammation might be effective means to reduce cardiac risk, even if those don’t lower LDL. No one knows, including your cardiologist.