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Coping with high cholesterol

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Old Mar 21, 2015 | 11:55 AM
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Default Coping with high cholesterol

After dealing with high cholesterol for forty years, well before it was fashionable, I finally have good news.
I have familial hypercholestrolemia. There are about 1.5 million americans who share this genetic bonus.
Diet has very little to do with my levels, my body just likes making it.
As an added joy, my body has never tolerated any of the cholesterol lowering meds.

I started a process called LDL apheresys, sort of like dialysis but it filters out LDL cholesterol instead.
It is rather tedious in that i get to drive 1 1/2 hours to go there and stayed connected on the machine for another 4 hours before making the return trip.
Oh and I had to have a fistula created in my arm to give them a big enough blood flow to process me.
It's also good that I have a good insurance plan since this is $3500 every two weeks. ( I could have gone to mass general which is a little closer, but they are $8500 a treatment)
So yeah that out of pocket max... no problem.

The good news:
I finally got some numbers from the first full process.
Going in that morning, I had a total cholestrol of 372 with an HDL / LDL of 33 / 335. Triglycerides of 119
For the record, The 335 is the bad cholesterol number there folks.

Walking out the door 5 hours later. those numbers were total 135, and HDL LDL of 33 / 100. Triglycerides of 63.
Of course like the ad says: don't worry we'll make more and it will only take me two weeks.


And the promising news.
There is an emerging class of drug coming to the market in the next few years ( maybe months)
They are called PCSK9 inhibitors. The results appear to be pretty dramatic. http://www.fiercebiotech.com/story/a...ear/2015-03-15
The early drug's form is an injectable, once every two weeks. It is not going to be cheap. ~$18k/year.
But it will be significantly cheaper than the current course of action and swinging by the doc's office for a quickie injection beats the hell out of blowing 7-8 hours once every two weeks.
Not to mention not having two sharpened garden hoses jammed into my arm.....

Because the results have been so good with such limited adverse affect, the FDA may consider an accelerated approval on humanitarian grounds.
This could mean a few months from now I stop going to Connecticut every other week.


The other good news:
According to my doc if you can push the level down enough, you can actually reduce some of the bloodstream deposits and reverse some damage already done.
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Old Mar 21, 2015 | 01:10 PM
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I have no idea about your exercise routines, but you’ve probably heard that exercise is the best way to lower your cholesterol or shift the HDL/LDL levels more towards HDLs. It only takes between ½ to a full hour of a cardiac friendly, stamina related exercise to start the effects. It’s a PIA but may work better than drugs with their side effects. Keep up with your diet, too.

good luck,


gary


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Old Mar 21, 2015 | 01:35 PM
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Good luck with it, Jerry! At least you are fortunate that it is working. I'm no M.D., but 335 combined sounds high. I have a favorable genetics for both levels. I have always been around 45/105. So my primary doc is not concerned, even though he checks it every year. Spring weather is coming soon, so pump up those bicycle tires and ride, ride, ride!
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Old Mar 21, 2015 | 02:03 PM
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Jim, that 335 was just the LDL number....
My personal high for combined was 455.
I always chuckle when they have a health fair at work and they have the little portable machine for blood testing.
They only go to 300.


Gary,
unfortunately exercise hasn't played a big role in changing my numbers.
It's simply bad genetics.
My old man kicked at 40.
One of my sons had a reading of 280 at the age of 8.
I've got cousins who smoked who had their first heart attacks in their 20's.
Fortunately I am heterozygous, i.e. I only got it from one parent.
Were I homozygous, i/e/ I got it from both parents, I'd likely have been long dead.
Typical cholesterol level for that group is 1200 to 1800. They rarely live out of their teens.
The oldest known homozygote was in her forties.

Basically there is a gene which produces proprotein convertase subtilisin/kexin type 9 or PCSK9. ( yeah that was a cut and paste )
This inhibits the liver from extracting LDL's from the bloodstream. Folks like me just have it in spades.
The new drugs will tie up the PCSK9 protein making the liver more effective.
The new drugs are a human body product so their has been very little rejection or side effects.



A better article explaining PCSK9 inhibitors.
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Old Mar 21, 2015 | 02:37 PM
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Jerry, I'm reasonably lucky in that if I watch what I eat I can keep my counts within limits. Now my late father-in-law was another story. He would do everything right including exercise & diet and would still have a combined level in the 500 to 600 range.

Good luck with the "filtering" treatment.
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Old Mar 21, 2015 | 02:46 PM
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Getting old is not for wimps...
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Old Mar 21, 2015 | 03:00 PM
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I guess I am fortunate that my cholesterol responds to the statin that I take. Course, if I would get off my lazy, fat a$$ and exercise a bit more, then maybe drugs would not be necessary.
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Old Mar 21, 2015 | 05:58 PM
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Originally Posted by Emil St-Hilaire
Getting old is not for wimps...
Boy ain't that the truth!
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Old Mar 21, 2015 | 06:17 PM
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More and more studies show that diet has only a small impact on your cholesterol levels. Exercise has a bigger impact.
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Old Mar 21, 2015 | 06:34 PM
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Heart disease runs in my family. I have been tracking it from my youth both in my own blood chemistry as well as current science. I have been reading Science News for decades. Many drugs and treatments focus on certain aspects and may miss the larger picture. Remember the old advice to avoid butter and eat margarine? Now its the reverse of that; margarine is terrible for you. Eggs were the same way. All fat was treated the same.

Much of animal science applies to humans. If you look at animal husbandry from the early part of the last century, you will find ulcers in animals are caused by H Pylori bacterium. Hey, guess what? Took another 80 years to figure out the same thing affects humans.

What the point? Tigers don't get cardiovascular disease and all they eat is red meat (rare) with all the fat (high saturated fat). Why? Their bodies compensate. Particularly vitamin C and some other items. Guinea pigs are like people and get heart disease. Their bodies, like humans do not make vitamin C and lysine. Scurvy kills by vitamin C deficiency so severe your blood vessels leak. The collagen that helps make them strong is too weak. Most Americans don't have scurvy but are deficient enough that vessel walls are weak. Lipoprotein subgroup A is like a delivery truck of cholesterol (lipids) that are deposited (or removed) from weak or inflamed parts of your blood vessels. Deposits create atherosclerosis. If you improve the health condition of your vessels and that inflammation is gone, those same lipoproteins remove plaque. Your body is compensating for weak pipes and build up a layer inside in an attempt to shore things up. Of course that can lead to MIs. (Myocardial infarctions or heart attacks)

This is why healthy people can have sky high cholesterol and have no MIs. You can take steps to help your body help yourself without a smorgasbord of drugs that often treat symptoms but not the cause. Here is a link to get you started. There is so much out there to discover on your own. Good luck.




http://www.google.com/url?q=http://w...8n2wf_i83yo9uQ
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