Familial hypercholesterolemia

If you have a thyroid problem, it may not show up in blood work. You can take a ton of cholesterol medicine and it won't help if
your thyroid is not functioning properly. Some Dr. may want to give you a small dose of thyroid med. and see if your thyroid is not
functioning well. Another option is to see an Endoc. doc to use the scan where they rub a jell on the area and a monitor
gives them a good look at the thyroid. I went through a lot of medical test and none of them showed and ER visits,
finally an Endo. Dr. did a scan of my thyroid and found a 2.8cm noddle and half the thyroid was removed,
easy operation, but my Endo. doc told me "no amount of cholesterol med. will help if the thyroid is not functioning well"
This often is the case with cholesterol. The thing is I spent much time and money and ER visits. And an Endo doc finds
it in a gel scan in her office.

Hello! I would love to connect with others that have familial hypercholesterolemia and/or recieve apheresis treatments. I have an APOB gene defect that has caused premature cardiovascular disease, FH confirmed by genetic testing and a heart cath last year at age 52. I have always had high cholesterol and my doctors flipped a switch to be aggressive to treat it once new drug options (PCSK9 inhibitors) became available. I have since run through all medical options and currently am not treating. My highest untreated LDL has been around 300. I am scheduled to begin LDL apheresis next week. I’ve had such wonderful care at Mayo since 2006 figuring this out and I am so thankful for everyone that has been a part of my care team there. It is not practical to drive to Mayo every other week for treatment so I was referred to a clinic closer to me. I am told that apheresis not only reduces cardiac crisis risk but will also reduce fatigue and stress on my body that I haven’t really recognized since it’s been with me since before birth. My struggle is to manage progression of buildup in my arteries while I maintain my mental health and remain active. It has been super isolating and has included working through a fibromyalgia diagnosis as part of this. My hope is apheresis will be a magic bullet for me.

Thanks for reigniting this discussion about familial hypercholesterolemia. I hope @pcspetpro and @elio will also join the discussion.

@jharsh, how long will each LDL apheresis session be? Will you be going every week or every 2 weeks? And for how long?

The cardiac stress test will only indicate a problem if there is a 70% + blockage. A Calcium Score Test (CAC) will give a better idea of how much or how little plaque one has in the coronary arteries.

They say each “run” will be 2-3 hours. The first will be 3 because they start slow. The plan is every two weeks indefinitely. They will want to see how long it takes my body to replace what is removed. I think I’ve read it takes a body anywhere between 4 days to 4 weeks. Yes, I hope other commenters come back here. Thank you, Colleen.

@lookinup55 ask your Dr. If your medical team says nothing to worry about then stop worrying.

I have experienced similar test results and am 63 years old. I tried taking statin drugs several years ago but stopped because of the side effects. I did a lot of research regarding cholesterol and the heart and medications to "correct" the problem. I learned that just as we have different normal body temperature readings, the same holds true for cholesterol. I found that the statin drugs work for about one out of every 100,000 people and the other 99,000 don't get any benefit from taking them unless you count the side effects. I discussed this with my primary doctor who told me the findings were correct. I refused to take any more statins of any kind because I didn't see the value in it as far as my health was concerned. That was more than eight years ago. I have not had a heart attack or stroke and according to the current formula my chances of having a heart attack in the next 10 years is 4%.

My husband had a massive heart attack at the age of 50 and would have died except for the fact that he was in the emergency room when it happened. His left anterior descending artery was 100% blocked. Stents were placed in the artery. He was put on statin drugs and experienced severe side effects of muscle pain and weakness. He decided to stop taking the drug and was given other older drugs for cholesterol which had little or no effect on his levels. His primary decided to discontinue medications for cholesterol. That was 21 years ago and through diet and exercise his refraction rate increased from 15% to 45% which is unheard of for someone who had the type of heart attack he had. He has not had another heart attack. Due to an irregular heat beat a defibrillator was placed in his chest four years ago. He will be 72 in March and still works every day and hasn't decided when or if he will retire.

Do your research and learn everything you can about cholesterol, triglycerides and the heart. One thing we have learned from our cardiologists is that some people have cholesterol that is dense and heavy and others have light, fluffy, cloud-like cholesterol. The dense type is what can cause problems. Our bodies produce most of the cholesterol in our system and is necessary for brain function as well as other things.

Good luck to you.

@cindy63 I so agree with you Hi I,m Linda@Lioness Back in 96 I had a triple by pass my arteries where clogged 85,90,95% they put me on statin they haven't helped except gave my muscle weakness so I stopped per Dr. My count has always been high .I talked with my Dr she said it helps to control the Hdl and triglycerides welI I,m on a higher dose blood work in latter Jan then I,ll talk to her again if it didn't make any difference. I,m on an older statin

My step son 38 gets apheresis done at Big Barnes here in St. Louis, he goes once a month,

Great to connect with you. I had my first run yesterday. It’s going to be a lot more than I realized and I’m overwhelmed. How long has he been doing it? I found out my small veins will be a challenge so I’m interested to learn from others what they do, if anything to make that part of it easier.