Hi
I have been in W&W since 2020 and so far so good (ish)
Just had my lipid profile back and my cholesterol is elevated. There is so much conflicting stuff regarding cholesterol and whether it is linked to a shorter time to treatment etc. I really don't want to go down the statins road and wondered what this wonderful community thinks about both the link with CLL and how safe/effective is Red Yeast Rice supplementation?
Red yeast rice contains a compound called monacolin K, which is chemically identical to the statin drug lovastatin. I don't know why you would want to try an unknown purity/safety supplement, instead of taking a drug tested to contain a known purity & amount of active component. If you want the "most natural" statin, ask for lovastatin, since it results from fermentation of the rice. But is a fermentation product hugely different than brewing something up in a test tube?
webmd.com/cholesterol-manag...
If you could find a reputable brand that was willing to provide proof of quality & purity, and ongoing quality assurance (QA) testing, that would be the only way to try this supplement IMO. If a company tests their product as rigorously as the prescription products, one is less likely to have problems from contamination or too much/too little of the active ingredients.
Thanks for your quick response! I think I will pass :)Julie
Further to the reply by SofiaDeo , Red yeast rice was number 5 on the list of supplements found to cause liver damage
healthunlocked.com/cllsuppo...
Neil
Oh gosh! Glad I asked. Back to the drawing board.
I rarely saw any doctors before my Cll diagnosis in my 60s. After some reading on cll, i figured out that I needed to establish a relationship with a local internist who was aware of my leukemia diagnosis and could monitor my overall wellness.
My internist did a full workup on me when I first saw him, including some heart scan which showed some mild to moderate plaque built up in my arteries. He told me that a statin med would lower my bad cholesterol and stop, or slow, the plaque build up.
I have been taking statin meds ever since, with zero side effects. My cholesterol levels have both improved dramatically ever since.
In the way of full disclosure, I live in an area where rice is grown. I am biased against red rice. Red rice is just a weed to me. It reduces the yield of good rice because it’s hard to find an herbicide that kills red rice and spares good rice. I vote for taking a proven statin to lower cholesterol.
Your cholesterol may be elevated but it's your triglycerides and fasting insulin level that you need to watch. Cholesterol is just a harmless building block. It's present in every cell, 20% of it is in your brain. No cholesterol, no life. It's vital for nerve function and myelin formation. Don't take my word for it, google and double-check.
Here is where I am at:Cholesterol 243
Triglycerides. 75
HDL. 80
LDL calculated. 148
Non HDL cholesterol 163
Fasting glucose 93
We maintain a healthy, mindful lifestyle, organics, exercise etc and thus , optimally I do not want to have to resort to pharmaceuticals or supplements if I can help it. Too much other chemistry gets affected.
So....million dollar question: What can I do right now to achieve better results? Is it impossible because of the CLL factor?
Thanks so much!
Julie
Wow, those numbers are great! Most likely your fasting insulin is perfect too. Fasting glucose in itself doesn't tell us much, because it can be kept in the normal range at the cost of having above normal insulin levels for years (while developing insulin resistance).But that doesn't happen with your HDL and triglyceride levels😁. With those numbers you can sleep like a baby and worry NOT about your calculated LDL level. The formula errs on the safe side in cases like yours. It's likely way lower than 148. How to improve on this? No need. Steady as she goes. You're good.
Bless you!
Could you budget to have your blood run by the Cleveland Heart Lab, if insurance won't pay? They measure not just the levels of the various factions, but the particle sizes within the factions. The ratios & levels of *certain particles* are actually more important that a simple measured "number". They measure certain inflammatory markers. And then they come up with a cardiac risk assessment.
My HDL cholesterol runs under 50, but taking the actual particles (they measure & adjust the risk assessment for non-HDL cholesterol somehow) I am actually in the "lowest cardiac risk" section.
And I totally agree with LeoPa, Notmuchenergy, & Mcc28. if you aren't getting enough fiber, you can take all the drugs in the world, and your blood results will likely still be wonky. The pills can help nudge us along, but diet is the key.
An easy way to incorporate fatty fish, is to get canned salmon WITH skin & bones. Run it through a blender or food processor (can even hand mush it up, but the texture will be a bit uneven) with some olive oil, a dollop of sour cream, or ranch/other dressing/mayo. You don't taste/feel skin & bones this way. Add chives, other herbs if you like. You can then put this on top a salad, eat it from the cup, or make a sandwich. If you don't use mayo or dressing containing egg, no salmonella risk, I mix up several cans at a time so I have 4-5 days worth I store in the fridge. And the canned costs waaay less than fresh salmon. I buy online from Vital Choice, I really like that brand.
Some great advice! I will take all of it! Thanks. Julie
you could always try eating oily fish 3 or 4 times a week to raise your good lipids.
It seems to work for me
If you have interest in the what risk reduction might occur with statin therapy, this page may be helpful: statindecisionaid.mayoclini....
my GP prescribed me omega 3 supplements
I also eat fenugreek and mung beans in my soup every week as they are supposed to help w cholesterol ..
Hi,
I made a number of changes to my diet after diagnosis. I am well over 90% plant based with fish and very, very little chicken and drink 4 liters a day of water. I was having a devil of a time digesting and I adjusted my diet based on my daily well-being. My CLL Specialist said that diet had little to no effect on CLL. Unfortunately, she was right about the CLL part. My numbers continued to rise and I began treatment. Still in treatment, although I have reached a status of Remission-ish.
But, that isn’t the full story. In nearly 5 months, I will turn 60. Other than my pesky birth certificate and the persistent folks at AARP, I still feel like I am in my 30’s. I am physically stronger, I am no longer feeling tired all the time, my inflammation markers have decreased substantially, I sleep a solid 8 hours a night, and I feel AMAZING.
I was lucky that my insurance covered 6 visits with a nutritionist. I made small changes that I could easily manage and stick with. I kept a food log to track what I ate and how I felt after. I food prep. I know, I know BORING! I still have difficuty with joint pain, I think med. related, but I am overall well.
There was not a magic pill for me. It wasn’t a supplement, it wasn’t a magic elixir. It was me figuring out what foods worked for me. The trial that I am on has really knocked my cancer back. The changes that I made to make my diet work for me, has brought my well-being back. I wish you all the best.
Sandy
Perfect! Good for you, Sandy. This is what I needed to see. I am tweaking my diet all the time. I know my CLL specialist blows it off, but what I put in my mouth has a direct correlation to how I feel! Certainly things have changed since my dx. I am experiencing joint pain, too. Not been able to completely identify the root so far. Best of luck on your journey.
Julie
Read or listen to the book Good Energy by Casey Means. She has a great chapter on cholesterol and how statins do not lower the more dangerous part of LDL. Your numbers look good overall and adding in 50 grams a day of fiber could really help..
Thanks!
There is a growing cohort of doctors in mainstream medicine who are realising that statins have become frequently prescribed when unnecesary and in some cases not prescribed when they should have been. That's largely because of the inconsistent significance of "high cholesterol". Even LDL-C is not a reliable measure of the risk of cardiovascular disease (CVD) and an indicator for statin therapy.
The American College of Cardiology has developed a CVD risk estimator that you can use yourself. It is based on lipids plus other data to generate a more meaningful risk number. If you're around or below average risk, ...well, talk to your doc and you decide.
tools.acc.org/ascvd-risk-es...
A variation of this risk estimator is available in the UK and is promoted by the NHS.
It's great for 10 year risk, but unfortunately, the "Lifetime Risk Indicator" portion of this tool is only for those 20-59. And only for people without a cardiac disease diagnosis.
Indeed, thanks.
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