Seen consultant for cholesterol results, levels down a little with diet but unsure what to do next. Any comments very welcome!

[deepblue]

Results are : TC 7.5 (down 1.1), LDL 6.0 (down 0.9) and trigs 0.94 (down 0.56). Am pleased with this as stopped statins 3 months ago and wanted to see if I could make improvements with diet. (Lower carb, and following Portfolio diet to a certain extent).

Consultant said this was pretty insignificant as my LDL is still way too high. I asked whether it was possible that I have F Combined Hyperlipidemia and not FH but she dismissed this as said "I am telling you you definitely have FH".

Decided not to push the point any further as she is an extremely nice person and not sure whether I have the facts straight. But looking at Aliwally's results and with what her consultant says I am pretty convinced I do have FCH instead. Anyway, I suppose the main thing is that LDL is still very high.

I told the cons I took myself off Lipitor (Atorvastatin) due to muscle pains/aches and didnt want to go back on them. So have been given the choice to:

a) Take a chance and dont take anything (not advisable according to cons)

b) Take Crestor 5mg 3 times a week and if tolerated to increase to 5mg a day

c) Take Ezetimibe which would be second choice of drug as not so effective.

Finally to try Benecol as not yet taking this (only works for 50% of people and by 0.5 apparently).

Does anyone have any comments on this please, am considering Crestor but reluctant as actually come from a very long lived family and obviously statins were not available in the 1800's! Grandparents and other ancestors going way back have lived to 80/90 with no evidence of heart disease, its only appeared recently with my father (heart attack age 75) and cousin (heart attack age 52), but as mentioned before she has diabetes,smokes,lifestyle issues.

Thanks very much and sorry for lengthy post!!

[Aliwally]

It''s hard to have a disagreement with a nice doctor isn't it ! Going back to your first post , you say a relative has "possible" FH, has anybody in your family actually had DNA test that shows a definite monogenic cause for FH ( the index person).

I suppose you could argue that it doesn't matter what you call it, your LDL is too high and you need something to lower it, but to me the heat seemed to be off a bit when I was told I didn't have FH and of, course, it meant that my daughters didn't have it.

5 mg is the lowest dose of Crestor..I couldn't tolerate it , but that isn't to say you won't. I think having a definite diagnosis helped me to accept having to take statins, and my dad had a heart attack at 52 and a fatal one at 67. My grandad had a fatal heart attack in his early 70's, so I am getting convinced I need to protect myself.

[deepblue]

Hi Aliwally,

thanks for replying, sorry to hear about your dad. Sounds as if you do need help to lower your cholesterol.

No one in my family has had the genetic testing except myself but high inherited cholesterol seems to be there as I have four known 2nd degree relatives with total cholesterol over 7.5 and one great aunt (age 86!). Also two others with high triglycerides from same side of family. My sister age 40 has total chol of 6.7 but her doctor is not concerned despite knowing about family history.

[DakCB-UK in reply to deepblue]

So if you've had the genetic testing and it's shown FH, why do you still suspect it may be FCH?

There's Benecol and Flora Proactive which are slightly different so if you don't get on with one (I didn't), try the other.

When I was in your position, I tried Crestor next. Didn't work for me, but next in line was Zocor which seems to be working. What dose of Lipitor were you on? I was on 40, then 20 of Crestor... 5 seems very low to me.

[deepblue]

Hi DakCB

I have been genetically tested for FH but they couldnt find the normal gene and the consultant said its possible I have a gene that has not yet been discovered. Last year they said I am being treated as if I have FH because my LDL levels are so high. But to me thats not the same as Definite FH. According to the Simon Broome Criteria if I have understood it right, I have POSSIBLE FH. Like Aliwally I feel its important to get a definite diagnosis as FCH is a bit more benign. Am also worried about travel insurance as I travel a lot (retired now).

I was on Lipitor 20mg then they put it up to 40mg which gave me problems.

[DakCB-UK in reply to deepblue]

Oh right. Sorry I misunderstood the genetic test as being definite. It is possible to have a gene that has not yet been discovered. But isn't FCH rarer than FH?

Travel insurance is fairly simple if you pick a provider that either doesn't care or accepts medicated FH. Life insurance is a bit of a swine, but that's probably different for retirees anyway. I think HEART UK have a list on their site, or call them if it's gone missing.

[Aliwally]

FCH is much more common than FH. They reckon it affects 1 person in 200, making it the most common familial lipid disorder. My genetic test told me that it had eliminated 95% of the monogenetic causes of FH in the UK , so I'm accepting that I don't have one of the other 5%, although some people on this site do.

Also my IMT scan doesn't fit in with having FH where (so I was told by a consultant) readings would be in the highest percentile matched for age and gender. I've just picked up all this information along the way in my quest for a diagnosis.

[DakCB-UK in reply to Aliwally]

Wow. Thanks for the correction. I think FH is around 1 in 500 but I could be wrong on that too!

[deepblue]

Sounds like you have a very good consultant Aliwally. Did they refer you for a scan or did you have to get it done privately?

[Aliwally]

Bit of a long story deepblue.I actually went to see a consultant privately after losing confidence in the first lipid clinic. I had been told FH was unlikely first of all, then at the next visit it was highly possible but could only be definitely confirmed by genetic testing, but there was no money.

Next visit, they assumed I had it and told me to come back in a year, I thought you must be joking. I actually didn't see the consultant but that could have been an admin error.

Private consultant saw me on NHS at his lipid clinic where I got genetic testing and IMT scan as routine. I think he felt sorry for me, as I was frantic about my disabled daughter who had moderately raised cholesterol and glucose, I think now she has the FCH which is appearing earlier due to her immobility, but I could be wrong.

Anyway, now back at the first lipid clinic after having had a bit of a to do with first consultant over everything, but I was so angry. They now have a part time consultant who was lovely...that was the one I saw the other day. As I say, a long story!

[deepblue]

Thanks Aliwally, sorry to hear about your daughter, hope she doesnt have FCH. Suppose its hard to tell as FCH can start off with moderately raised cholesterol but high levels could be down to other factors too cant it? Especially if your daughter isnt very mobile.

Might think about getting a second opinion privately. Worst thing is not knowing what to do for the best. Keep wavering between a) forgetting about the fact I have high cholesterol at all, b)trying the new statins, or C)getting second opinion! Have just got new GP who seems very nice, going to have a chat about it when I go and see him next. Just been called back for a second blood test as have slightly high creatinine (kidney function) levels. Hope its not another side effect of statins!

[DakCB-UK in reply to deepblue]

I just went to my second bloody test (it's a typo but I'm leaving it) this year because my creatine was high. Never had that one before in about a decade on statins, so I doubt it's connected, but we'll see what the new test says!

[Aliwally]

Good luck! If you did get a second opinion, the advice to continue with statins would be the same.

What LDL level did you get down to with 20mg of Lipitor...wasn't that good enough for your consultant?

[deepblue]

Cant remember what the ldl level was, think total cholesterol was under 5 but she seemed to think that I would have had high levels since birth so wanted it to be lower to make up for it. I did have a cholesterol test age 38 abroad and total cholesterol was 6.5 (they werent bothered back then), but forgot to tell consultant until this week. This is one of the reasons I dont think I have FH as have been told levels are high since birth with it. Also my father doesnt have particularly high levels either and apparently it cant skip generations, although his siblings do. Weird but I suppose they dont understand all the genetic reasons yet for it. Dad had heart attack age 75 and no problems before that. Always really healthy. I think really I should have asked the consultant to go through the Simon Broome criteria with me - but always get a bit nervous with doctors and only recently started to question things!