Familial Hypercholsetrolaemia & Type II

[LeftPeg]

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]

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.

 

[LeftPeg]

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.

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.

 

[SimonCrox]

Hi, these are impressive improvements in your cholesterol levels, and also great to hear that no upsets from the treatment. Men with untreated FH often have heart attacks in their 20s - 30s, so that about 50% have heart attack by age 50; aggressive treatment delays or prevents heart attacks [https://www.atherosclerosis-journal.com/article/S0021-9150(02)00330-1/fulltext ]. So, you are avoiding heart attacks with all this treatment. I'd continue since it is not apparently upsetting you; if you stop some and have a heart attack, you cannot replace the damaged heart muscle. How low to go? I do not know of any studies looking at this in FH, but in secondary prevention (treating cholesterol after the heart attack), the standard target was under 4.0 mmol/L at one stage, so this is where you are.
Best wishes

 

[SimonCrox]

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.

I feel that 3.9 mmol/L is not super low. You will find studies showing low cholesterol is associated with adverse outcomes, but often those people with very low cholesterol levels have some other condition which causes both the low cholesterol and the adverse outcomes. In the Amazon rainforest, folk have excellent coronary arteries and a mean LDL of 2.35 mmol/L [ https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)30752-3/fulltext ]. Interestng question about whether you need such a big dose of atorvostatin if the Praluent corrects your defect. Would be interesting to see what your consultant says.
Best wishes

 

[LeftPeg]

Thanks for the advice @SimonCrox - much appreciated!

 

[LeftPeg]

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.