So I got the notes from my last gastroenterologist virtual visit.

Among the notes, I find that if my liver enzymes are still elevated, he's going to order a test to check for non-alcoholic fatty liver disease.

Not this shit again! In 2020, during my cancer, my symptoms were neurological, so everything was impacted, including my digestion. I went to the ER with pain, etc. A gastroenterologist (not my current one) decided that I should be screened for non-alcoholic fatty liver disease... So I had this test, and that test, until a senior doctor stepped in and said that I did not have it.

I talked to my lipid specialist after this, and he said that yes, my enzymes are elevated because of the statins I take, but that he does not worry about liver damage until they are much higher than mine.

So... My current gastroenterologist is a young wet-behind-the-ears doctor, and he was not part of that first rodeo. I'm going to have to inform him that I don't want any liver test done only due to the elevated enzymes. I'll tell him to talk to my new lipid specialist if he has any concern.

Herding doctors... or herding cats. Which is the hardest?

#doctors #cancer #hypercholesterolemia

Today is Rare Disease Day.

I've got two of those.  

First is familial hypercholesterolemia. This is not your run--of-the-mill hypercholesterolemia. No. This cannot be just treated with diet and exercise. Even the statins aren't great at treating it. The state of the art is a PCSK9 inhibitor. This, this does wonders.

Then, there's the PCNS lymphoma. Lymphomas are already considered rare. The PCNS form is even rarer. I'm over 5 years in remission and doing fine.

May we eradicate all diseases, from the commonest to the rarest.

#RareDiseaseDay2026 #RareDiseaseDay #hypercholesterolemia #FamilialHypercholesterolemia #PCSK9Inhibitor #lymphoma #cancer #PCNSLymphoma #CancerSurvivor #HeartAttackSurvivor

It often starts with a routine check-up. You’re feeling fine, maybe just in for your annual physical. We run some blood work, and then the results come back. #atherosclerosis #cardiovasculardisease #hearthealth #highcholesterol #Hypercholesterolemia #LDLcholesterol #Statins

https://priya.health/hypercholesterolemia/

So I was on the phone with some sort of patient advocate. We talked about my hypercholesterolemia, then we move on to my cancer.

Her: "You've had a gastric lymphoma. What's the medicine you take for it?"

My: "My lymphoma was not gastric."

Her: "Sir, we talked about your heart problem. We're talking about your cancer."

My: "Yes, I kn..."

Her: "Sir, first, I asked you about your heart problem. We're done with it. Now I'm asking you about your cancer."

Me: "Yes, I know this."

Her: [talking over me.] "Sir..."

Rinse and fucking repeat. We spent a good five minutes with her explaining to me, as if I were a damn baby, I might add, what I fucking already knew!!!

When finally, she asked me again for the medicine. I told her, "your diagnosis is wrong: my lymphoma was not gastric."

Her: "Oh...."

#ActuallyAutistic #PatientAdvocate #hypercholesterolemia #cancer

It looks like I'm going to be off #kava for a while.

"But why? ☹️ "

Because of the damn fat. I did get my cholesterol checked in December. It was too high. This is my opinion. I had two primary care physicians that told me my cholesterol was "fine." I did not believe them.

I saw my lipid specialist this morning, and he agreed with me that my cholesterol was too high. The only obvious thing to stop taking is the kava.

So from now on, no more kava.

THC, here I come!  

#hypercholesterolemia #FamilialHypercholesterolemia #cholesterol #lipids #thc

OMG! I shot myself!

"What happened?"

I shot myself with my alirocumab.

"Your ali-what?"

My praluent.

"Your what?"

My PCSK9 inhibitor.

"What does it do?"

As the name says, it inhibits the PCSK9.

"What's the PCSK9?"

Hell if I know. A protein, I guess.

"What's a protein?"

Did you fail biology class?

"Yes."

Well...

#PCSK9inhibitor #alirocumab #praluent #FamilialHypercholesterolemia #hypercholesterolemia #protein #biology

"We show that Aster-B and Aster-C are critical for nonvesicular #cholesterol movement in enterocytes...Enterocytes lacking Asters accumulate PM cholesterol and show endoplasmic reticulum cholesterol depletion. Aster-deficient mice have impaired cholesterol absorption and are protected against diet-induced #hypercholesterolemia. Finally, the #Aster pathway can be targeted with a small-molecule inhibitor to manipulate cholesterol uptake."

https://www.science.org/doi/10.1126/science.adf0966

"For the first time, gene-editing provides hints for lowering cholesterol"

Wow! I hope this research pans out, because it would mean that I could get a "once and done" therapy rather than the cocktail of three drugs that I take right now to keep my cholesterol in check.

The patients in this study were people with familial hypercholesterolemia, exactly the disease I have. They edited a gene in the liver to bring the cholesterol down.

Medicine advances.

#hypercholesterolemia #FamilialHypercholesterolemia #cholesterol #CRISPR #GeneEditing

https://www.npr.org/sections/health-shots/2023/11/12/1211672034/for-the-first-time-gene-editing-provides-hints-for-lowering-cholesterol

Here's a good example of how the US health care system is messed up.

I have a genetic defect. This defect causes hypercholesterolemia. So I have what is called *familial* hypercholesterolemia, because the cause is my genes.

I've been approved for a PCSK9 inhibitor. This is a drug that works only for people who have familial hypercholesterolemia. If you give it to a random guy without my disease, it is going to do nothing to them. (Perhaps hurt them, I'm not sure.)

I've received a letter from my health insurance saying that my approval is expiring soon.

Why?  

This is a genetic defect. A PCSK9 inhibitor is not gene therapy. It does not modify my genetic makeup. That's why I have to keep taking this drug.

Because it is a genetic defect, I'm going to have to be on this drug until I die. Or maybe they are going to find something better, but I expect this "something better" will also require approval because we're wading into highly specialized territory here.

So, again, why ask for approvals every year? It is not like my genetic code is going to fix itself magically.

#PCSK9Inhibitor #USHealthcare #healthcare #approval #hypercholesterolemia #genes #GeneticDefect

Yo ho ho. Introducing Fartulent! You should watch the video if you want to learn about its side effects.

https://spectra.video/videos/watch/3c33caca-eeda-47b9-b1c7-91d4a6ca5845

#spoof #ad #advertisement #marketing #drug #hypercholesterolemia