Seeing a new specialist can be a bit dicey when you have ME/CFS. Most doctors are not very knowledgeable about the disease and if they are let’s just say it is not in the way we might hope. I have learned the hard way to keep expectations as neutral as possible.
Many who read my blog will know that I have been deep in the cholesterol weeds for the past six months. I knew I would need to science the heck out of this topic if I stood any chance of having my concerns taken seriously. Besides, I love learning about new ideas and lipid metabolism fascinates me.
My gambit paid off when I got to see a lipidologist at Stanford. This was over a year in the making, dating back to when I first learned that my LDL cholesterol (LDL-C) is freakishly high (though not as high as some!).
I find it pays to do research before an appointment. Most of the time my efforts are lost on the doctor but at least I get to learn something new even if the consultation is a bust. I never tell doctors how to do their job and try not to be too leading. This approach seems to garner respect and promote a higher level of discussion.
As a former professor, I love teaching hospitals and am all for the mentoring of medical residents and fellows. I find most fellows – MDs pursuing training in a specialty after residency – to be super thoughtful. Attending physicians, on the other hand, have been more dismissive of my concerns in the past. I hit the jackpot with both my fellow and attending for this appointment.
I had the consultation pretty well-scripted in my mind. I started by letting the fellow know that I am an established patient at Stanford in neurology and the Chronic Fatigue clinic (yes, I hate that name, but that is what they call themselves). I shared that I am a former patient of Dr. Jose Montoya but didn’t expect my new doctor to know who he is, given the size of the university. He quickly informed me that he was well aware of him and knew of my disease. Whew. I wish everyone could walk into an appointment with a new specialist and find they have some (correct) knowledge of ME/CFS (but I am sad about the whole Montoya debacle).
I shared that my cholesterol was high before starting the ketogenic diet and has likely been elevated since at least 2006 when I had my first cholesterol panel done. Even back then it was just above the reference range, but not egregiously relative to my current numbers. After starting keto, my LDL-C shot up to 330 mg/dL (99 mg/dL is top of the range) but I was able to drop it 100 points simply by lowering my saturated fat intake.
We discussed a possible genetic component given my cholesterol was on the high side before keto. Familial hypercholesterolemia (FH) is a phenotypic diagnosis, meaning that the criteria are based on cholesterol levels, not genetics. Huh? If your LDL-C is > 190 mg/dL by definition you have FH. Those of us in the keto world are not fond of this because many have normal lipids prior to keto yet get shunted down the FH pathway; a hyper-response to increased fat intake is likely not the same as true FH (though clearly genetics are still involved here).
Family history is not as helpful as you might think, according to my new doctor. I figured with FH that cholesterol is high regardless of diet and comes with some family history of heart attack or stroke. I have no family history of cardiovascular disease (CVD) to my knowledge, but then again my mom died when she was 53 (brain aneurysm) and this was before the age of statins. My dad was not on a statin at the end of his life (but died of congestive heart failure). My brother has normal lipids. My insurance did not approve genetic testing so this may remain a mystery until curiosity gets the better of me and I spring for some testing out of pocket.
As an aside, my doctor (the fellow) also trained in pediatrics and said that children should be screened for cholesterol at age 9-11 and then again at age 17. Just sayin’.
CAC score is a game-changer
My coronary artery scan (CAC) score of zero was a huge game-changer in my appointment. Many people in the keto world use CAC scores to help guide decisions – often without support from their doctors. Physicians in the United States tend to be dismissive of the CAC scan and discount its value. As a 51-year old woman, I am at that age where a CAC scan is especially informative as this is when heart disease starts to show up. The fact that I am showing no signs yet is a good thing.
Imagine my surprise when the cardiology fellow assigned to me said that my risk of a heart attack in the next 5-10 years is only 1%. However, a CAC score of 0 today is no guarantee it will be low in 5-10 years, especially with my LDL-C levels. We will use CAC scans every five years to revisit risk.
Statins and PCSK9 inhibitors might not be the best drugs for people with ME/CFS
Prior to my appointment, I did a ton of research on non-statin options for treating different aspects of high cholesterol. My last piece served me well; we had an excellent discussion about my options.
There are several reasons why statins might not be a great choice for someone with ME/CFS, namely that they can cause muscle aches, and in rare cases, muscle breakdown (rhabdomyolysis). They can wreak havoc on the electron transport chain by impacting coQ10 levels and cause fatigue. Supplementation with coQ10 does not appear to entirely offset a statin-induced deficiency. There are other side effects that concern me, but these two are at the top of my list.
The cardiology fellow said the last thing he would want is to give me a statin and see symptoms linger if I had to stop the drug due to side effects (most healthy people recover quickly). He said we simply do not know enough about ME/CFS to assess the possible side effects of the drug in people with this disease. I was relieved the discussion ended there without me having to act like a trial lawyer to make my case.
I went in figuring I would be given a PCSK9 inhibitor (PCSK9i), a monoclonal antibody that hit the market in 2015 and does a serious number on cholesterol. Both my local cardiologist and ME specialist thought this was the best route for me. I went in completely ready to accept the idea that I would need to trial a statin to get insurance approval for this very expensive drug, hoping my doctor would allow me to fudge things a little and go straight to a PCSK9i. He said none of that was necessary and they could get approval for a PCSK9i if need be.
I hadn’t stopped to think about how a PCSK9i – basically a bunch of antibodies – would interact with my immune system. Huh. Luckily, my new cardiologist made the connection and as with statins, he was concerned about how I might respond. This is what I call a good doctor. He left the room to confer with the attending cardiologist, as is customary in a teaching hospital.
The game plan
There was no need to brace for a bad experience with the attending physician – he was deeply respectful of me and my disease, my concerns, and my desire to keep doing keto. Clearly most cardiologists are concerned when patients come in with cholesterol as high as mine but given my zero CAC score and other excellent markers (eg., low hbA1C, low BP, low hsCRP) he said it would be reasonable to not prescribe medication at this time and use repeat CAC scans to guide future treatment decisions. But we all agreed that it would be better if I could lower my LDL-cholesterol and apoB a little.
I explained to him my rationale for keto and that within that space I was very happy to further tweak my diet. I explained that there is evidence for lots of problems with energy metabolism in ME/CFS, including impaired glycolysis, decreased activity of the pyruvate dehydrogenase (PDH) complex, and more recently evidence of impacts to complex V in the electron transport chain with compensation by other complexes (I go into this in painful detail lol in a future blog for those interested). I told him I viewed beta-hydroxybutyrate as my best option for fueling my body for these reasons. He seemed to appreciate my thoughts on this and said he sees no reason for why I need to stop keto if it is benefitting me.
I joked that I heard Dr. Ethan Weiss recently did a vegan keto experiment with guidance from Dr. Carrie Diulus and lived to tell the story. The three of us marveled at what vegan keto would look like. All of this was to say that I am willing to try anything and have the willpower to do so (though I don’t think I need to go as far as vegan keto).
The attending physician said that he and the cardiology fellow decided that Zetia (ezetimibe) would be a great drug for me. I was a little perplexed because I don’t know if I have a cholesterol absorption problem, which is how Zetia lowers cholesterol – by blocking the uptake of cholesterol in the small intestine. They said they put money on it lowering my cholesterol by 15-20%.
Another option we discussed is an older drug called a bile acid sequestrant. Many in the mold/detox world are familiar with cholestyramine, which is in this class of drugs. Cholestyramine binds to bile acids (derived from cholesterol), which are then excreted. We are leaving this option for now but I wanted to share this information.
In other news!
My lp(a) came back virtually non-existent – hooray! I am resting much easier with this news.
I just had another cholesterol panel drawn as a baseline before starting the Zetia and tinkering with diet. Next steps in my N=1 experiment will include:
- Continuing to eat the same way I have for now – which includes about 35 mg of saturated fat per day as well as 3 eggs;
- While holding diet constant add in the Zetia and retest in 2 months to see how much the drug will lower my cholesterol on its own;
- Tweak my diet to include virtually no saturated fat from animals and coconut products (remember plants have saturated fat, too). Eliminating butter and other dairy products will be the hardest – I will substitute avocado oil for my beloved blueberry muffins; and
- Eliminate eggs – this will be for the sake of experimenting – I have no intention of dropping eggs (the choline!) unless I see a significant drop in cholesterol.
My goal is to bring LDL-C down to about 150 mg/dL (my doctors did not give me a value).
“Beyond my wildest dreams” (said no one ever about a doctor’s appointment)
I cannot express how grateful I am for the excellent care I received at Stanford for my dyslipidemia. My expectations were exceeded in ways I did not expect at a mainstream medical institution. Most people with keto-induced dyslipidemia struggle to find cardiologists who will entertain non-statin approaches to treating high cholesterol. Just last week a fellow (non-keto) patient with ME/CFS was given a statin for LDL-C of 105 mg/dL in the ER! It is stories such as these that fuel the statin denialists.
I get that standards of care are needed and they need to be based on population-level statistics, i.e., results from drug trials. However, if you have a challenging health problem such as ME/CFS a more personalized approach to medicine is needed. I found exactly that at Stanford.
In general, I do not mention my doctors by name in my blog, but if you are curious to know more about my experience drop me a line.
My other blogs on cholesterol, keto, and ME/CFS:
My next one in the series will explore the link between high cholesterol and ME/CFS.