Familial hypercholesterolemia

Posted by lookinup55 @lookinup55, Dec 18, 2016

Hello everyone –

Im a new member and would like some input from the group. I am nearly 55 yrs old but have had terrible cholesterol problems my whole life. When I was in my late teens, my trigs were over 1200 (yes, 1200 – that is not a misprint). As I have aged they have dropped but still range between 600 and 800. I am self employed and most of the time I have not had medical insurance so my medical care has been sporadic at best. Each time is see a new doctor and they do my blood work, they freak out and want put me on all these medications. I have NOT been under medication for this my whole life, and 5 yrs ago I had full cardiac stress test done at the hospital done as part of a full physical including COPD screening etc. The stress came back showing absolutely no signs whatsoever of coronary artery disease or any cardiac abnormalities at all . ( I think I still have a copy of the test somewhere). My blood pressure is 130/70 and my resting heart rate is 63 beats per minute. I work out 6 days a week. If this trig and cholesterol problem is so serious, wouldn’t it show up in these test? Even this new Dr I saw seemed a bit perplexed that my blood pressure was normal and my hear rate so low.

thanks

@lookinup55

thanks Predictable – I will look over that info. As far as the other concerns you mentioned, the Dr said my liver functions were normal, mentioned nothing about my pancreas, and Im not diabetic – either type 1 or type 2

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

Liked by Parus, lioness

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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.

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@cindyt63

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.

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@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

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@jharsh

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.

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

Liked by jharsh

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@scardycat

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

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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.

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@jharsh

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.

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He has a fistula in his forearm, he has been doing it for about 5 years, has no problem he also runs 5 miles a day,

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@scardycat

He has a fistula in his forearm, he has been doing it for about 5 years, has no problem he also runs 5 miles a day,

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Some of our grandchildren have been tested and also have the gene😢

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@scardycat

Some of our grandchildren have been tested and also have the gene😢

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@scardycat I'm sorry to hear about your grandchildren having this gene also .

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@lioness

@scardycat I'm sorry to hear about your grandchildren having this gene also .

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Thank you🥰

Liked by lioness

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@scardycat

Some of our grandchildren have been tested and also have the gene😢

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Single gene? I’m HeFH with APOB defect. Does he have to be careful about when to exercise or is it a matter of just when he feels good enough to? I’m concerned about my grandkids and not getting my kids to address it. Are your grandkids treating? I have nieces and nephews that have to have it. No one but me has confirmed it.

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@jharsh

Single gene? I’m HeFH with APOB defect. Does he have to be careful about when to exercise or is it a matter of just when he feels good enough to? I’m concerned about my grandkids and not getting my kids to address it. Are your grandkids treating? I have nieces and nephews that have to have it. No one but me has confirmed it.

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Not sure about single gene, I’ll find out, he runs everyday religiously, he had stent at 26, one grandchild age 8 starting on low dose statin.

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