Familial Hypercholsetrolaemia & Type II

Hi all,

I have FH, and had a total cholesterol level of 13.5mmoll/l upon diagnosis 10 years ago. When I last had my bloods done (Nov 2nd), the results were as follows:

Total - 3.8mmol/l
HDL - 0.9mmol/l
Non-NHS - 2.9mmol/l
Triglycerides - 1.1mmol/l

I take 80mg Atorvastin (which I thankfully can tolerate), along with 10mg Ezetimibe and 150ml of Praluent (1 injection per month).

I'm a bit worried as those numbers are fairly low, and I've lost 2 stone since my last blood test. My weight has always had a significant correlation with my cholesterol level, so I'm concerned that my numbers may now be too low.

I'm off for my next blood test next week, but just wondered if anyone could reassure me that I'm unlikely to keel over!

If my numbers have dropped much lower, I'm going to ask my doctor to reduce my medication. For my money, the praluent (gene therapy) and healthier weight should be enough to control it now. I'd at least like to put that to the test anyway.

Cheers

Chris

connie104 said:

I am also on Praluent injections which I take every 2 weeks and my cholesterol has gone down from the high 7,s to 4.1
I see my Lipid consultant every 3 months and have a blood test before the appointment to see how I’m doing.
Can you not discuss your concerns with your consultant at your next appointment?
I cannot tolerate Statins or ezetimibe so I was prescribed Praluent.

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That's good to hear. I was one of the trial patients for Praluent, so it's good to see my fellow FH sufferers benefit! I'm definitely going to speak to my consultant when I see him in two weeks. Praluent looks to be successful in reversing the PCSK9 dysfunction from which I suffer, so effectively I shouldn't have to be taking such massive doses of statins.

I guess I'm worried about the possible consequences of my cholesterol dropping to a dangerously low level, if there is such a thing. I know cholesterol is essential to the human body, so there must be consequences of having it super low.

Last time I was at this weight, my cholesterol was 4.9mmol/l and that was without the Praluent.

Thanks for the advice @SimonCrox - much appreciated!

Got my results.

Total - 3.5mmol/l (-0.3)
HDL - 1.1mmol/l (+0.2)
Non-NDL - 2.4mmol/l (-0.5)
Triglycerides - 1.0mmol/l (0.1)

hba1C is down from 103 to 62, which is mildly disappointing, but I will continue to eat low carb.