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

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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🥰

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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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Hello all. I know this discussion has been a bit dormant, but recent events have brought me here. I have FH from back when they called it Frederickson’s Type 4 Familial Hyperlipidimia. My dad had it and most recently our son and grandson have been diagnosed with FH as well.

At 42 our son had a cardiac event and went in to be checked out. He’s a marathon runner, healthy eater, nonsmoker, and crossfit participant. His echo was fine, his ekg looked fine, BP was in the normal range. Then he failed his stress test. First cath found three major blockages. After several consults with various members of his local cardiac team he opted to try stenting, which they were able to do. His team is adamant about driving his numbers ‘into the basement’. His formal cardiac rehab program will go for 12 weeks and his regimen of statins, blood thinners, and more will continue far longer than that.

Our son had a good outcome, which has become a new call to action for me to seek out an FH specialist to insure I’m doing everything properly and to increase my knowledge base on this disease.

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Hello everyone,

I thought you might be interested in reading about the Familial Hypercholesterolemia Clinic at Mayo Clinic:
https://www.mayoclinic.org/departments-centers/familial-hypercholesterolemia-clinic/overview/ovc-20442183

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@pcspetpro

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.

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I will ask my doctor if a CAC will be helpful. Many thanks for your experience.

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