Latest appointment at the lipid clinic had me badgering my consultant about IMT scanning. I won't be getting one as there is no funding for it in Lothian and my consultant says it's of little benefit anyway. After this I managed to persuade him to have my Lp(a) levels checked. He wasn't keen as it's not a routine test, therefore, I presume expensive. Anyway, my blood is winging it's way to a lab in Glasgow to be done. Yippee! Unfortunately my cholesterol level has gone up to 7.1 from my previous test of 5.6. Not sure why, still taking 40mg atorvastatin and no changes to my diet - disappointing. Have had the kids to their consultant. She doesn't seem too happy because I am still not agreeing to puttting them on statins. She says if I am not prepared to put them on statins then there is no point in her seeing them again! She admitted that where my children lead others will follow as they are her only 2 patients with FH so I feel they are being used as guinea pigs. I would just prefer to hold off statins until after puberty but she disagrees and says the earlier the better is the way to go. Will never be sure what is the best thing to do.
Lp(a) and IMT scanning: Latest... - Cholesterol Support
Why aren't the kids seeing the same consultant as you? When I was younger, we were seen as a family group.
I almost agree with you about statins in children: I'd see if theother treatments like sequestrants can get the cholesterol down to something reasonable before going to statins. At that age, I think you'd never be sure if there were side-effects or if it's some other bodily change.
I'm probably asking daft questions, but was the increase all LDL and was the test done under similar conditions (fasting, time of day, day of week)?
The thinking in Edinburgh seems to be the children should be seen in a paediatric setting so attend the metabolic clinic at a kids' hospital while I go to a lipid clinic.There has been no mention for the kids of any treatment other than statins (and dietary measures). Good job my son hasn't been put on statins already because he his small for his age and I would probably have thought the statins had stunted his growth!!! With regards to my test results, in June they were cholesterol 5.6, HDL 1.6, LDL 3.6, trig 0.8, 2 weeks ago they were, chol 7.1, HDL 1.9, LDL 4.8, trig 0.9. All done under similar conditions except time of year. Frustrating. Consultant pushing me towards adding Ezetimibe (me, resisting - as usual!)
Yikes. Reading other comments you've made, I think I'd be pushing for the children to be treated by your consultant and if your general trend is OK, I don't think I'd worry about one blip in cholesterol readings. Might be a freak observation for some reason. Could you persuade them to retest sooner and if it's still elevated, then change the treatment?
I think your paediatrician's attitude is totally unprofessional but I am trying to stay positive about medics at the moment!
As for the IMT scanning, it was only offered to me at my "second opinion" hospital. (by the way, thanks to my GP who referred me without any hassle). I was told that it not only assesses your atherosclerotic "burden" but they also use it as a diagnostic tool. People with FH are typically in the top percentile group when compared with others who don't have FH.
It's a hard one to know whether the results bring any peace of mind, but on balance,I think they do.
hi seahorse, how old are your children? And what are their cholesterol levels? sorry for asking but just wondering, my children are now on statins, it wasn't a decision we took lightly, but having seen my husband going through heart surgery at 42 yrs and previous family history we felt they had no choice. they did have high cholesterol levels, both are on 20mg atorvastatin and one of them also on ezitembe! It is a big decision to make on their behalf.
both are seen by a consultant buy its only our gp who monitors my husband's levels not by a lipid clinic.
Hi Iona, my son is 12 and daughter is 8. Both their cholesterol levels are around 7.5. Both tested positive for FH on genetic blood test. There is no strong family history of heart disease. My brother had a heart attack and died, aged 52 but had a complicated medical history having had a kidney transplant and was a heavy smoker and drinker. Have your children noticed any side effects on their statins? I know exactly what you mean about it being a decision not taken lightly. Hard enough to be making decisions for yourself never mind the kids.
hi seahorse, my daughters are now 15 and 13, have been on statins for two years! eldest had cholesterol level of 11.9 and youngest 13.6! we felt as their levels were so high at a young age we didnt have much choice, this was living a healthy lifestyle and exercising! the eldest had terrible nightmares when she first started on the statins but has decreased now - still happens occasionally, she also has had a reaction to exitembe. while the youngest has been fine on both statin and ezitembe, however she has been overly tired over the last year but having stopped the medication for a time did not improve her tiredness. she has also been tested for addinsons disease test provef negative. they now think she may have had glanduar fever last christmas. she is a lot better by now.
they wouldnt but your son on statins ad he's yoo young, statins are only licenced for over 10 year old. i do feel there is not enough evidence out there that they work on children so young and the same regarding side effects in children.
mine haven't been tested for FH but consultant had said they do have FH based on my husband's family history. he had triple heart bypass aged 42, he lost both his parents to heart disease at a young age.
An expert may correct me, but even if you go to research children and statins most studies say "more long term studies are needed". True, but not exactly helpful to parents in your situation.
It seems like we now have the technology to pick up FH in children, but nobody is exactly sure of the optimum treatment for them and I don't think that's right when you are dealing with children.
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