Lipid Clinic

[trafar]

I suffered a heart attack in July last year, otherwise healthy, non smoker and non drinker. Was told that it could be inherited cholesterol but no investigations. Paternal grandmother died of heart attack at 49, my dad had mini stroke at 53 then a heart attack at 68. A cardiac nurse suggested that my family get their cholesterol checked, one of my brothers has been checked and was found to have high cholesterol (higher than mine) and he has been referred to the lipids clinic and has chased today and told it’s a 37 week wait. My question is why is he being referred to the lipids clinic and not just been given statins?

[Weetabixie]

Hi trafar, sorry to hear that, I hope things are improving with you since your heart attack last year.Regards the statins, I'm surprised they haven't prescribed them also. Might be worth your brother asking his gp as to why they haven't done so. Lipid clinic is more specialised I assume in cholesterol treatments and be able to prescribe what GP's can't.

[Lilacwine76]

Hi i have familial hypercholesterolaemia and attended the Lipid clinic. My problem was my body couldn’t tolerate the oral statins. So for the last 3 years I inject a med ,( sorry I can’t remember the name of it) once every 2 weeks, my cholesterol numbers are now fine.

Good luck to you.

[lcunliffegizmo123 in reply to Lilacwine76]

Yes my cholesterol is high and cannot tolerate statins i am waiting a lipid clinic appointment around March x

[Hidden]

Hi trafar, unusual not to give him statins with a very high blood pressure. I had a routine blood test for my thyroid gland. At the same time they did, full blood count, liver and serum lipids. Doctor called me to say that lipids came back as borderline, which like yourself is inherited, he put me on a small dose of statins.

[Coffeelover2]

they should have put him on statins if his cholesterol was high. I’ve had a genetic test for high cholesterol (waiting list for results is up to 6 months) but I’ve been put on statins and my cholesterol isn’t that abnormal. I’d suggest he asks his GP - they are putting loads of people of statins every day

[Lowerfield_no_more]

It is normal practice in the first instance for statins to be prescribed for anyone found to have a lipid profile outside of the recommended limits, and it would seem to me to be very unusual for someone who has been referred to a lipid clinic to not be prescribed statins as a precautionary measure before they attend the clinic, more so since the lipid clinic base line treatment is also likely to involve statins. So unless there is a medical reason why statins were not prescribed I suggest your brother goes back to the health professional involved for further discussion especially since the wait time without lipid profile management is many months. He could also start to follow lifestyle measures to reduce his cholesterol as detailed on the BHF website and elsewhere which will benefit him.

Finally there are NHS/NICE guidelines as to who gets referred to a lipid clinic and your brother clearly qualifies for a referral, whereas although you may have a lipid profile that is outside normal limits, if you are not attending a clinic or have not been referred, your profile and circumstances might sit outside the the guidelines and therefore you don't qualify for referral.

[trafar in reply to Lowerfield_no_more]

I guess because I had a heart attack I was under the cardiac team perhaps that’s why. I would like to know if it’s inherited rather than us second guessing.

[Lowerfield_no_more in reply to trafar]

If it's any help 25 years ago I was found to have a total cholesterol of over 9 and was put on statins and have been on them ever since. At that time there was no such thing as a lipid clinic and I have never been referred in recent times, probably because my lipids are essentially under control. However I probably do have the genetic abnormality since my cousins also have very high cholesterol and one has recently been referred to a lipid clinic (I have no siblings). Anyway since I have recognised that I might have this abnormality all I have done is to ensure my two sons were tested and apparently they are 'normal'. I don't see the point in going any further especially since my lipids are now under control. I did read somewhere years ago that the faulty gene is passed down through the mother which, if true, could explain why my sons are normal and my cousins from my mother's sister are all abnormal.

[Happyrosie]

as far as inheritance goes, when I looked into this some thirty years ago they simply looked at the patient’s statement of his/her family history as far as was known and then the decision as to whether it was familial was based on that narration. I have a feeling that genetic testing might be a bit expensive and they might feel it unnecessary. But you could always ask.

As has been said, your relative should ask his medical team why he hasn’t been put on statins,

[Astronomyrules]

Hi trafar,I have familial hypercholesterolemia and before measures to control it my cholesterol was 13.7. I have been been on statins and platelet inhibitors for the past 22 years and on Repatha injections for the last 5 years, the latter being prescribed and managed by my cardiologist as ,sadly, there is no lipid clinic in my area, the other medications are prescribed by my GP. A lipid clinic will have a bigger range of options including a type of "dialysis" and presumably will look at the effects over the whole body. As others have said it would be worth him asking his GP for statins in the interim. On the subject of inheritance, to my knowledge FH is caused by a dominant gene meaning you only have to inherit it from 1 parent. Heterozygous HF, the most common, although if you are really unlucky both your of you parents have a faulty gene. More commonly if one parent has the condition each child has a 50 % chance of inheriting the condition. Out of 4 siblings, I am the only one with FH. I inherited it from my mother, and she from her father. I have never heard of a sex linked inheritance pattern for this condition, as has been suggested in other posts. The great thing with a dominant inheritance pattern is that if you don't exhibit FH you can't pass it on to your children. My only daughter doesn't have FH and neither do my siblings so it will be gone from all of my family's descendants, unless,of course, they have a child by someone who has HF or if there is an entirely new mutation as many genes are implicated in causing the condition. I hope this helps . Now that your brother is 'in the system' he will be well looked after . I am now 72 having been diagnosed in my late 40s., my mother died aged 59 and her father aged 52. They didn't have statins and other cholesterol drugs, nor the extensive care and monitoring the NHS provides. I hope this is some consolation to you, your brother and the rest of your family.