Opinions Please -- Am I crazy?

Hi Lisa, it has been about 1 1/2 yrs since I stopped the statin, and the neuropathy is just getting worse. I took Alpha Lipoic Acid, but unfortunately it did not work for me. If anything it made it worse, because I don’t have diabetic neuropathy.
Before I took the generic Crestor, I took other statins, but they either hurt my muscles, or raised my liver enzymes.
I tried Zetia, before the generic Crestor and it caused neuropathy also, but as soon as I stopped taking it the neuropathy disappeared. I wasn’t so lucky with Rosuvastatin. My cardiologist told me to never take another statin.

I can’t take the newer injectable cholesterol meds either because of side effects. Since I exercise a lot and eat a low fat vegan diet, my levels aren’t too bad, but I already have 10 yr old heart stents.

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@Marilyn6 & @MM1
Edit Sep 13th - My apologies for the confusion and thread hijacking yesterday. I was having an Alzheimer’s moment :point_down:t4::point_down:t4::point_down:t4:

What side effects did the cholesterol meds cause @Marilyn6? My doc is recommending I start injections of Prolia, as the oral Risedronate doesn’t agree with me.

This is typically used for osteoporosis, after bone density tests. Not related to cholesterol meds.

Correct

Jim, I tried Repatha to try to bring my LDL levels down. A few days after injecting it, I had pain in my right hip area and lower back. I had trouble getting out of chairs and even walking was quite painful. This happens to about 10% of people who try taking this med. The pain went away about a week after I stopped taking it. I normally get a lot of exercise and feel good. Hopefully I can get a handle on the neuropathy.

Did your hip heal well? I hope that the new med really helps you.

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Have you tried taking a high dose of Vitamin C to see if that reduces your LDL. That is the only thing that has been working for me long term. I have been taking Atorvastatin (or another statin) for the past 3 decades and December 2019 my endo insisted that I go to the maximum dose of 80 mg/day as my LDL kept climbing and reached 95. I told her no and started experimenting with food/exercise/supplements.

I have Cholesterol home testing equipment and tested every Saturday and the only thing that consistently worked was a high dose of Vitamin C. I gradually increased my dose of 1000mg tablets to the point of taking 3 in the morning, 4 with lunch, and 3 more at bedtime for a total of 10,000mg (10 grams) per day. After additional testing, it was apparent that some of that Vitamin C was only remaining in the body for a few hours and then eliminated through urine.

To mitigate wasted Vitamin C, I switched to Liposomal Vitamin C and got the same results with 7,000mg per day (7 grams). The Liposomal is a capsule rather than a tablet that is both easier to swallow and acts as a time-release as Vitamin C once into the system, does not stay active there long before being eliminated.

I have now been on this for 9 months and my LDL cholesterol is holding steady at 60. The beauty is that you can get an LDL test very cheaply, try the Vitamin C and then get another LDL test a month later and see if this works for you. You do want to build up your tolerance over a few days and back off by 1 pill per day if you start having loose stools.

I am still on my statin, and expect to start reducing dose until my LDL stabilizes around 70-75, but can’t do that at this time as I am working on reducing the Calcium in my arteries and my horrendous CAC score so can only work one issue at a time.

This is what I have been using in case you are interested and it is quite inexpensive if you apply the 20% off coupon:

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Marilyn,
thus is bhakti,
i did not realize it was you!
How are you doing? I am well. Still on MDI and still loving it even though my TIR is less than before. I am using InPen. Do you have it? Its amazing for knowledge. Most important for me is Insulin on board so I don’t go on roller coaster rides.
My BP has ben up but all else is good and i feel well!
Hope you are too!

I did raise my Vit c levels, after we talked about this, to about 8,000 but then reduced it back down to about 1,500. I took the large amount for about 3 months, but I can’t quite remember why I felt I needed to reduce the amount. I don’t remember if my glucose levels started rising or if I read warnings about taking that much Vit C. My memory used to be very sharp,but as I reach 70 I have noticed it slipping a bit. Could be all that is going on with the fires.

I haven’t had a blood test in a long time. My cardiologist doesn’t think I would live through a case of Covid, so I am isolated. I don’t expect any of my levels to change much. I did start taking CholestOff and that should bring my LDL to under 100.
I will continue to eat my very low fat diet and get in my daily 10 miles of walking and riding my exercise bike, so I keep my heart rate up while exercising. We are on the edge of a fire, so the smoke is too bad to exercise at this time.

Please let me where I can order the at home cholesterol test. Do you feel that it is very accurate?

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Hi Bhakti! Your message ended up being public, so I will answer here. Glad that you are doing well with MDI. I need to order an ipen.
Fine here, except for statin induced neuropathy and extremely heavy smoke. The west coast is on fire!

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I have stopped doing my weekly testing as every lab result I get now comes out identical to the last one. The equipment I have matches up very closely with my self ordered quest diagnostic tests as well as the tests performed by my endo at Joslin in Boston and my GP here in Western MA. The protocol is based on the Friedwalde equation which is what all doctor offices use unless doing a subfractionation analysis.

If you want to just do a bunch of tests after trying to modify Vit C/Food/Exercise, I would be happy to lend you my rig as I am not using it at this time due to the stability of my LDL. I will, however, need it back in the first quarter of 2021 because by then I will have had my CAC follow up scan and that will determine if my protocol for calcium reduction is working or not. At that time I plan to reduce my statin dose so will need to be able to measure LDL weekly until I find the perfect Statin dose.

The meter is about $170 including shipping and handling and test strips run about $3.20 if bought 25 at a time - $5.16 if bought 5 at a time. The unit and test strips ship from China and during Covid delivery has been taking 8-10 weeks. Out of Covid delivery is about 3-5 weeks. I do see this advertised in the US from time to time as well but the prices are through the roof.

So if you want to borrow mine for the next 3 1/2-4 months, send me a PM where to ship it and then you can decide if in the long term you want to buy your own or order yours directly at:

https://www.aliexpress.com/item/32994038623.html?spm=a2g0s.9042311.0.0.36464c4d3P0Wvj

That is extremely generous of you. I will think about it. I would just order my own except for the delay in getting it. I will message you later today. Marilyn

I wouldn’t say that. There isn’t really good data to answer that question. The recommendation is based on the logic that since statins seem beneficial for anyone at risk for cardiac disease, and that all diabetics are at risk for cardiac disease, all diabetics should be on statins. However, at least last I checked, no one has randomly given diabetics with ideal levels of cholesterol statins or placebo and looked at longterm effects. So it is a speculative extension of data from other populations, and not actually based directly on relevant data.

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I think that’s a reasonable tactic in your situation.

I refuse to take a statin as I think it masks and distracts from the root cause of heart disease. I believe that lifestyle measures like eating nutrient dense whole foods, losing weight, if needed, attending to regular exercise, improving sleep, and practicing daily mindfulness exercises together provide a much more potent antidote to heart disease than any pill.

I concede that a statin can bring some benefits in certain situations but I think that benefit is much more marginal than paying attention to lifestyle factors.

One paper I read this year identified five factors that contribute to a healthy metabolism. These factors are good blood glucose control, good blood pressure, high HDL, low triglycerides, and a desirable waist to height ratio. This paper found, using these five measures, that only 12% of the US population is metabolically healthy. Note the absence of LDL on this list.

I think beating down an LDL number with a drug does not deliver the health benefits that a sincere effort improving the lifestyle factors I listed above do. Just my 2 cents.

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Some believe that while statins reduce LDL, the mechanism underlying their cardioprotective effects is their anti-inflammatory function, not their effects on LDL. I notice the five factors you mention don’t include direct indicators of inflammation, which seems like a potential major oversight, given that elevated inflammatory markers are linked to many types of health problems, including even poor mental health. My guess is that within 10 years, people will be monitoring inflammatory markers, and many recommendations will be based around reducing those. So even if LDL isn’t the key marker it is cracked up to be, that doesn’t necessarily mean statins aren’t doing something useful. There also isn’t clear cut evidence (see my comment above) that statin use will be beneficial for all of the people it is currently recommended for. However, if someone tolerates them well and is at elevated risk for cardiac disease at all, it is easy to see why, given the evidence to date, doctors recommend them. Not necessarily worth enduring side effects that lessen quality of life though, and in the end, we are all complex individuals with a whole range of considerations that are more nuanced than any population-based recommendation.

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I totally agree and have reduced my LDL 36% by reducing inflammation which I achieved through taking high dose of Liposomal Vitamin C as described in post 26 of this thread.

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I suspect that people who are metabolically healthy as indicated by the five factors cited in the paper I reference share low chronic inflammation as a result of these five factors. I’ve done a lot of reading about cholesterol and heart health over the years that included much about the beneficial effects of statins.

It seems to me that the mention of a “side benefit” of statins that lowers inflammation is often hinted at without additional supporting evidence. With all the money behind large pharmaceuticals that support the use of statins, I’m confused about the lack of study into its anti-inflammatory effects. Perhaps those studies have been done but I’m unaware of them.

I still think that the total benefits of the lifestyle factors I cited earlier are greater than the effects of statins without any of the undesired and unwanted effects of statins as written about by many members here.

I realize that this tension between my position and those who see statins as a positive and healthy tool cannot be resolved here. We can each cite many papers and studies but still remain unable to bring definitive and conclusive proof of the correctness of our respective positions. That’s okay with me; I hope it’s okay with you.

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I would not assume those five factors are sufficient to provide low inflammation—correlated with it, probably, but I can think of plenty of individuals I know (anecdotal but still) who meet all of those five factors while still having inflammatory problems and/or health problems tied to chronic inflammation. I suspect the truth is far more complex and nuanced, both about what comprises good health and what role statins can or can’t play in that, than either you or the pro-statins camp tend to portray. It probably also is highly moderated by unidentified genetic factors—likely statins are good for some and either provide little benefit or might cause harm to others, but we don’t yet know how to identify those individuals.

For what it’s worth, I’ve never taken a statin and don’t plan to myself anytime soon. I know other people who given the factors at play for them, I’d recommend it or am glad they are taking them. I can certainly understand why someone would decide statins are not right for them, or that they are. It is bizarre to me though that anyone would have an absolutist stand point on them across the board, either way—it would be like someone saying everyone overweight should be on metformin or that no one should be, regardless of other factors or their experience with the med.

Thanks Marilyn - The hip recovery has come along nicely thanks :blush:. I’ve been walking on the treadmill for nearly 2 months and I just need to work on muscle conditioning.

I’m not sure if you saw the edit I left above >> @MM1 & Marilyn - My apologies for the confusion and thread hijacking yesterday (asking about Osteoporosis drugs on a Cholesterol thread). I was having an Alzheimer’s moment :see_no_evil:

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Sorry to hear of continuing neuropathy.
The fires sound awful out there and I hope you re in a safe spot. When do they think they will resolve?
Please look inyo In Pen…its easy and adds knowledge.
I have been cooking like a fool since covid lock ins and having great fun. Now its soup season so I got lentil going for lunch!
stay safe!

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I went through the same thing and finally ended up on Zetia instead of Lipitor (Atorvastatin).
For me it started about 5 years ago, I visited my cardiologist and he suggested I switch from Lipitor (which I’d been taking for years with no issues) to Crestor, the goal being to raise my HDL which Crestor is supposed to do. I lasted about a month on Crestor before I’d had enough, I felt like I’d been beat up every day, it just wasn’t worth whatever benefit I might have been gaining. So, the doc told me to go back on Lipitor at the same dose level I’d been on.
I switched back to Lipitor and the muscle pain reduced but did not disappear, coincident with this I developed an appendix infection and it had to be removed. Because of the pain I dealt with from the appendix I didn’t notice the muscle soreness was still present.
Long story short, I put up with the muscle soreness for several more years blaming it on a number of things. I finally decided to run an experiment: I stopped taking Lipitor for 2 weeks and monitored the muscle pain, then went back on it for another 2 weeks. I repeated these steps 3 times to confirm the effects, each time I went off the Lipitor the muscle pain was greatly reduced and as soon as I started taking it again it returned. I told my current endo about this and he changed my prescription to Zetia, so far I’ve not experienced any negative side affects but I also haven’t had a cholesterol test either, due to COVID. It remains to be seen how effective Zetia will be at reducing my cholesterol levels.

I personally believe the Crestor did a number on my system and it never returned to the state it was in before I began taking it. Maybe that doesn’t make sense, all I have is anecdotal evidence, but I won’t be taking it or Lipitor again.

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