Looking for advice on managing and treating cholesterol

Background
Since being diagnosed with type 1 a few years ago I get regular blood working including cholesterol panels.

From the beginning I’ve had LDL around 150 and my doctor said they want it less then 100 ideally less then 70. HDL is always 60-80.

They put me on Rosuvastatin and my next appointment 3 months later I mentioned my hips joints hurt and asked if it was part of being diabetic. He said it was the statin and stop taking it. I then tried Livalo, same result. I tried the lowest dose, cut the pill in half and only took it 2 days a week (half pill) still had hip pain.

I tried Zetia and my hip pain got worse quickly. In all cases I stop the medications and after a couple weeks feel normal again.

My doctor gave me samples of Nextol but so far I haven’t tried it. I don’t like that it’s a new class of medication just approved this year, I don’t really want to be in the opening group of population taking a new type of medication.

My doctor is now trying to get me approved for a PSK9 inhibitor like Repatha.

I recently did an Advanced Cholesterol panel. I won’t get into all the details but some things are good and some are bad. High LDL Particle count, bad LDL particle size.

Question

I’m curious what others do in this situation. I don’t want to ignore my long term health and have a preventable heart attack but I also don’t want to have pain every time I move which causes me to be less active.

I’m concerned Repatha will trigger similar symptoms but also last much longer because of the half life of the drug and it being a fixed dose (can’t take less). I’ve spent (A LOT) of time reading and it seems like doctors have theories but are not sure why statins cause some people pain. I also think the % of people with these side effects is under counted by a lot.

If anyone has had similar issues with cholesterol medications I’d love to hear your thoughts. If there are specific details I could provide that would be useful I’m happy too.

You may want to do a CAC scan as diabetes is a 3-legged stool Controlling Blood Sugar, Controlling Cholesterol, Controlling atherosclerosis. All 3 work hand in hand together. Working on only one or two of the three is looking for trouble down the road.

Most diabetics eventually die of heart failure, and in a large portion of cases, that could have been avoided

I had high LDL too, and I ignored it because my HDL was 100, Triglycerides were about 37, and my A1c was non diabetic. I ended up with two heart stents. This was 11 yrs ago and I had read a very popular book which said that LDL numbers weren’t important. Now we know that this doctor was wrong.

I can’t take meds that reduce cholesterol. They either affect my liver, cause me pain, or give me neuropathy. Rosuvastatin was horrible for me, because it gave me neuropathy which did not go away after discontinuing the med. In the fine print neuropathy is listed as one of the side effects people may get.

I tried Repatha but it caused pain in my right hip area, so I stopped taking it.
I did start taking a supplement called CholestOff which works well for me. I was able to get my LDL down to 90. Of course my LDL number fell after I almost had a heart attack, but LDL always falls once people have heart attacks or get stents.

Some people have the false belief that 50% of heart attack victims did not have high LDL, because their cholesterol numbers were normal after the heart attack. The heart attack itself brings down the number.

I am still taking CholestOff, but I was sent an article claiming that the supplement could cause eye problems. After a few years of taking this I did have my first bout with retinopathy after having had type 1 for 62 yrs. My cardiologist said that I should keep taking it, because it is better to lose my eyesight then my life. Lesser of two evils.
I also take a prescription dose of Omega-3 Ethyl Esters.

My LDL is now 65, so I am much less worried about my arteries. I think eating very little fat, exercise, CholestOff, and the Omega-3’s have been enormously helpful for me.

Yup, its all about those pesky small particles, LDL large, LDL Peak size, LDL small, most of which can be controlled through proper diet, exercise and periodic follow-up. The frustration I have is that in my State we have some of the best cardiologists in the world and they say just keep doing what I am doing and when my heart fails come see them and they will fix it. There are very few cardiologists in the US that specialize in the prevention of heart issues and most of them are located in CA, FL, TX and a few other areas. My guess is there is just way too much money to be made in stent and cabbage procedures to incentivize surgeons to get into heart issue prevention. Just no way to pay back student loans there.

I have been doing my own research and testing for the past 3 years and have reported some of it on this forum. I am due for my next CAC scan so that I can see if my exercise routine + meds + vitamins keeps my atherosclerosis (which I believe developed from years of statin use) in line with my diet keeping the particles where they need to be.

Sorry, there is no 2 line answer to your issue, but I will be happy to share my research if it helps you out.

Where are you located?

I was put on a statin Atorvastatin. It made me itch. Stopped taking it. My ldl was not high. It never really was high, but doc (pcp) wanted under way under 70. . Once the docs get the below 70 marker in their mind, that is it. Many folks complain of the side effects, and it seems to go on deaf ears.

My ldl is mid 60’s. Let me tell u what I do to see if this helps.
I eat no or very very little fried food. Pizza occasionally.
I eat oatmeal (steel cut) every day or at least 5 days a week.
I make it with water and add “I cannot believe it is butter” with raisins or blueberries.
Other days I eat 2 or 3 slices of turkey bacon and 4 egg whites with 1 yolk or Kodiak pancakes. I do not eat meat often. If someone else cooks it, I will eat it, No processed foods.
I think diet will be your best strategy.
Genetics plays an important part. My mom had the perfect diet eating veggies all the time. She had high cholesterol. Me not so much and have struggles with weight. I used to think buttered popcorn and chocolate ice cream were a balanced diet.
Good luck.

Just eat avocados for 2 weeks before cholesterol test and take the highest level of Vitamin C Liposomal you can tolerate (Highest level until it causes diarrhea) for 2 weeks and your Cholesterol levels will look great to your doctor, both HDL and LDL. I don’t encourage gaming the system but sometimes, when you and your doctor are slightly at odds with each other, desperate measures are worth considering.

This works for 95% + of the doctors that just do the basic HDL/LDL testing. It will not fool the CardioIQ advanced lipid panels or equivalent that are very rarely ordered.

I’m in Florida, I had a Advanced Cholesterol panel around 4 years ago that looked pretty good, particle count was 900’s. I also had a calcium scan and got a 0 (4 years ago).

I think since I’ve been T1D I’ve replaced some carbs with more fats and proteins but maybe not the right choices.

I’ve keep my A1c between 5.6-5.7 since diagnosis.

My doctor has mentioned me getting another calcium scan so we’ll see if he orders one.

I think for me knowing there is a problem motivates me to adjust my diet and excursive. I know my self and to stay motivated I need to re-test some times to see if my efforts are working or not.

I think after 3 months of my modified diet and exercise if he won’t order the test I’ll pay for it my self. If it gets my numbers to a better place that will help keep me motivated.

I will look into CholestOff, I see them from Nature Made which is already the vitamin company I’m using for Multi Vitamin and D3.

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You do want to do an advanced cholesterol panel before taking any statin. I am convinced that my atherosclerosis is the result of decades of statin use. A low dose statin is almost a prerequisite for a diabetic but doctors love to get the numbers below 70 by increasing the dose. From all the studies I have followed a low dose, say 10mg of a statin gets a pretty good initial drop, however, taking 40 or 80 mg proportionally only drops LDL by a few points.

My initial CAC score was in the high 600 range followed by a slight increase for my second one 6 months later. I am taking a therapeutic dose of Vitamin D3, Vitamin a and Vitamin K2 mk7 based on studies done in Canada, Japan and France. It has been just over 1 year since my last CAC scan so the next one will tell me if my cocktail along with exercise is working,

Most of my research was based on the review of multiple studies, long and boring as all heck. The best overview on the subject I found was the following book:

You are lucky being in FL as there are qualified doctors in FL that will work with you to manage your diabetes/cholesterol/atherosclerosis using preventative measures.

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Interesting I take those vitamins too.

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I had very good results with cholestoff. Because I also can not take statins. I get bowel issues from it and stiff joints.
I got scared off of it because of reports of retinopathy.

I changed my diet to low fat high carb, and mind you I’m not strict about it.
Before diet change my total cholesterol was 200 hdl was 80 ish and ldl was around 60.
With my new diet,My total cholesterol is running about 150, hdl runs in the 60s.
My LDL is usually under 100.
So my new diet had had a good effect and I’m not on any meds.
I will consider going back on cholestoff if my numbers increase.

You never mentioned what your diet is like are you on low carb or just ordinary diet?

I don’t think my diet is terrible. I very rarely eat anything considered a treat.

Cookie, Cake, Ice Cream, Candy, Sugar drinks etc… I probably don’t have even 1 of these a month.

I don’t eat many veggies but I do eat a lot of fruit.

Here is a typical day.

Breakfast
Nature Valley Protein Bar
Coffee

Lunch
Peanut-butter sandwich
Bowl of strawberries with 1 spoon of yogurt and little granola

Dinner
Whatever my family is eating but I don’t eat too many carbs regardless

Snacks
1 - Nature Valley Protein Bar
2 crackers and 10-15 cashews
2 more cups of coffee (1 sugar per-coffee, very small amount of cream)

I walk 7,000-10,000 steps per-day, every day.

I eat on a schedule so its pretty consistent, what / when I eat.

I would say I try not to eat a ton of carbs but I don’t set out to eat a ton of fat either.

It seems like your LDL was already very good even before making any changes. An LDL of 60 is below the normal goal of 100 and below the diabetic goal of 70.

Yes it was the total I was concerned with. And mostly because it was never high before.
I made my diet changes because I wanted better control and lower lipids was a side benefit.
I cut down on fat so that’s not surprising I would get lower lipids.
This could be just simple getting older. I’m a little paranoid about heart health.
You know how it was, at diagnosis I was told about losing my legs and being on dialysis blind,and I wouldn’t have to suffer long because I would have a heart attack before I reached 40.
So yea I’m 56 now

Chris, I follow the advice from Mastering Diabetes. Only 10-15% of my daily diet consists of fat. I have arteriosclerosis so I am trying to reverse that condition. I eat a plant based very low fat diet which seems to be working.

I feel for you. For years I was on statins, and complained of pain in muscles and joints. I developed trigger finger in all my fingers over 8 years. When I mentioned I thought it was the statins they said the side effects were rare, and did not affect tendons or joints. Then they put me on Crestor, and had unrelenting pain. I stopped on my own and within 2 weeks my pain went away. Started up the statins and again the pain started immediately; went to various dosing schemes and no go. So, with my docs in agreement, I stopped taking statins. Mind you I already had 2 RCA stents. When Repatha was approved they put me on that. I have had no side effects at all, and cholesterol came down to 120. To get me lower they added in Zetia, and I have had no pain in joints from that. I Have other joint and muscle pain due to spine degenerative disks.

I think your reservation that the dose is not adjustable and the antibody lasts more than 2 weeks is valid, but I have not had any issues. It is the one of three such inhibitors on the market, and has the most data regarding efficacy and side effects. So, you may want to give it a try.

Mike

Unfortunately Zetia gave me neuropathy which went away when I stopped taking it. I started taking a very small dose of the generic form of Crestor. It too gave me neuropathy but when I stopped taking the drug, the neuropathy stayed. One doctor told me that this happens to many people.

I see my endo next week.

Right now I’m working on dropping 7-10 pounds (already dropped 3).

Also increasing my walking every day, ideally like to have a 7 day average of 10k per-day.

I’m also considering CholestOff.

I’m not against taking medications but my next step is PSK9 and I’m concerned it will have similar effects like that statin except it may take weeks to get out my system.

On questions like these I usually ask - what does Richard Bernstein say on the subject? Usually what he says is get control of the blood sugar. Here is his video if you have not seen it. Q1: Regarding High Cholesterol - Dr. Bernstein's Diabetes University. - YouTube

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My LDL rose to unhealthy heights following the Bernstein way of eating. I ate very low carb for 11 yrs. and besides needing two heart stents, I suffered from migraines with auras, and with sudden low blood pressure which made me suddenly pass out.
When I stopped following Dr Bernstein and started eating more healthy carbs, I stopped passing out and I haven’t had a migraine in years. Bernstein’s diet isn’t good for all diabetics. My glucose levels were great, but my health suffered greatly. We really have to be concerned with the whole body, and not just excellent glucose control.

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