After having a fasting cholesterol test this week at my Endocrinologist office he described my total cholesterol as a "charging elephant". It is so high that I am ashamed to post it here. I am not ashamed of my A1C which is currently at 6.1%, but I need to learn all I can about trying to lower my cholesterol.
I can't take statins because of the side effects and I have literally tried them all. It would be so much easier if I could take them as my lipids were very good when I did. I told my Endocrinologist "I know I am a medical disaster" which is a accurate description of how I feel at present.
My Endocrinologist described statins as the 'bazooka' which will knock down the charging elephant. He understands why I declined his offer of a Rx for statins. Is there any type of alternative cholesterol treatment for someone like myself?
You are not a medical disaster and you mustn't feel ashamed. As I'm learning here on this site, its not always the numbers we should be focused on. I'm going through a hbA envy phase here, if I was 6.1 I'd take out an add in the local paper. If we don't tell each other honestly what our numbers are, how else can we learn from each other. You aren't the only one and no doubt you will help someone else in the same situ when they read your post. I'm not at all up on cholesterol, but I'm sure advice will be on the way. Tell you what, I'll swap my chol for your hbA.
There is another class of drugs that affect the guts. I think Ezetrol is the name of one of these. Have you tried this? My Dad is on it and has no problems and excellent lipid results. Way to go on the a1c, btw.
Statins as tolerated is my problem. I don't tolerate statins in any dose. I took Crestor for 3 years with great lipids. One Summer morning in 2003 I woke with severe muscle pain to the point where I could barely walk. I saw the Dr. immediately and he stopped Crestor. This started a 2 yr long cycle of starting a new statin, again with having the severe muscle pain, stopping that drug and starting a different one. I have literally been through all the statins currently available and all produced the same side effect.
Obviously I can do better with my diet and exercise, at this point I don't know if that will be enough or even help. But my Endo spent a long time explaining my high cholesterol to me and asking questions about family history. The Endo is doing a special blood test to check the 'particle' size of my cholesterol. He suspects I have something called familial hyperlipidemia.
I can really sympathize. I have been under constant pressure for years about my cholesterol. My HDL is above range and my triglycerides are within range, but my LDL is chronically high. And statins are like death to me. So I pretty much refuse treatment.
But if you still want to do something you could try one of the other major classes of treatment (from Mayo):
Bile-acid-binding resins Your liver uses cholesterol to make bile acids, a substance needed for digestion. The medications cholestyramine (Prevalite, Questran), colesevelam (Welchol) and colestipol (Colestid) lower cholesterol indirectly by binding to bile acids. This prompts your liver to use excess cholesterol to make more bile acids, which reduces the level of cholesterol in your blood
Cholesterol absorption inhibitors: Your small intestine absorbs the cholesterol from your diet and releases it into your bloodstream. The drug ezetimibe (Zetia) helps reduce blood cholesterol by limiting the absorption of dietary cholesterol. Zetia can be used in combination with any of the statin drugs.
In reviewing the lab results that I received from my Endo at the time of my appointment, my HDL is above range also, but it is flagged as "High". I always thought the lab flagged something that needed attention, am I mistaken in this line of thought? My triglycerides are also within range but my LDL and total cholesterol are POOR.
Sadly I have tried the Bile-acid-binding resins as well as the Cholesterol absorption inhibitors and could not tolerate either of them. My Endo has told me I can 'try' fish oil liquid if I want to, so I'm going to give it a go. Have no idea if it will help with any of my out of range numbers, but I don't think it hurts to try.
If I might be inquisitive, how did you get your Dr. to accept your position on taking statins?
The reference range corresponds to the test results of "most" people. It is not a "desirable" result. It is desirable to have an HDL as high as possible.
I don't believe fish oil will help your LDL, it does lower triglycerides and raise HDL.
The way I got my Dr to accept my position is by researching my position and being firm. It is my body. A doctor that doesn't accept my role in deciding my own treatment isn't one who I want to work with.
There are only 2 ways of getting cholesterol into your body, Animal products and your own liver making it. If you go on a strict veggie diet for month and have your lipids retested, you can see what your body is making.
There is very little you can do if your body is making too much cholesterol unless you can tolerate the drugs.
I know a friend who went on an extreme diet. She Vegan so no animal products at all, and also nothing that has OIL in it, I really do not know how she manages, because it cuts out tons of really good things like avocado.The point is that her Cholesterol dropped by half and her LDL did as well, but her HDL increased.
I don't know if this sort of diet is maintainable, but it sure did wonders for her.
My endo and cardiologist call me a walking heart attack. Like you, I can't take any statins. Severe muscle pain and the last one started taking out my kidneys. I have also tried all the resins. They tear up my stomach, also cause muscle pain and absorb my thyroid meds even taking 12 hours after the resins. Have spent the last year with my thyroid all over the place trying to find something. I am not overweight, 118 5'4", and exercise. My A1c is 5.9. I eat low carb and take fish oil. I have no idea what to do. I did try increasing carbs but it just makes the numbers worse. My cardiologist wants me to try vegan but then I am dealing with the carbs. Don't know what to do. I sympathize with you.
My cardiologist said that for some people who get muscle pain from statins, taking the supplement CoQ10, 200 mg/day may help solve the problem. He says that was true for himself.
Statins inhibit the production of CoQ10 in addition to inhibiting the body's production of cholesterol.
I have found only 1 scientific paper so far that supports supplementation with CoQ10 to address muscle pain and statins. Other studies have been more equivocal.
The test you mentioned for the size distribution of the LDL should be interesting as not all LDL is equally bad. Apparently it's the really tiny LDL that is the worst.
I tried statins for 7 years and I have stopped them and I feel way better. I have read a lot on statins and the horrible side effects that I have experienced. I got kidney stones which were made up of calcium. The chemical present in statins. So as I read I found people who had higher cholesterol numbers who lived long lives and people who had perfect cholesterol and died of heart related issues.
I asked more questions and had morE test done cause I pushed back on taking statins. I had a carotid artery ultrasound to check the thickness. It was ok. I then had a berkley lab done. This measures the size of cholesterol particles. I have larger cholesterol particles which is good since the larger particles don’t get stuck and form clots as much as the smaller particles.
From what I read is that it’s the inflammation of the artery that is the bigger issue than the cholesterol numbers. I am still reading up on things but to me it seems big pharma wants us all in statins to make money. So for me no more poison in my body.
My Endo seems to be a nice person and a compassionate doctor...however when he really wanted me to start statins in a "itty-bitty' dose (as he put it)and I refused, it seemed like he was all done talking to me. Do these doctors NOT understand that it would be so much easier for us if we could take statins? Maybe then we wouldn't have to worry so much about high cholesterol and such?
After I started this post, I got the results of the urine test that was done and mine indicated an increase in albumin. When I contacted the doctor to see if I should be restricting protein in my diet, he seemed uninterested in that aspect of it. I feel like he basically sent me home to die.
Mayumi, I'm so glad to know you!! I too have tried all types of statins and haven't found one that my body will tolerate...and I'm not ashamed just as I'm not ashamesd that I have Type 1 Diabetes....and my Cholesterol is also high, don't know how high but it's also over 300. Make no excuses for something you have no control over. I try to eat sensible and not think about what my body does with it. SHAME on your dr for having you to feel ashamed!!
I feel so 'defective' as though there should be something that I could do. It is almost like either I do what the doctor has suggested or he is thinking "to he77 with this patient". My HDL on my cholesterol was 78 and it was flagged as HI. What is wrong with high HDL?
I took coq10 along with statins and it did not help much. I tried every combination with no success. I could never shake the side effects. Plus I kept getting kidney stones after I started statins. Good in theory for me but bad in practice. I had a migrane headache for 3 years when I was put in 40 Lipitor with 200 coq10
My heart goes out to you as I've known from my DIL that kidney stones are terribly painful. I also had the migraine headaches with the statins as well as the bad muscle pain and muscle weakness. I could barely walk some days and thought I was going to die.
