I have been given cholesterol result by doctor and will be starting on statins straight away. Result was 19 which is highest he has seen.

[slainte123]

Also have xanthomas. Anyone else up in that range?

[Aliwally]

Some people on this site have had readings of 14 or 15. I take it that this is your TC (total cholesterol ) level.

The high reading plus the xanthomas make it pretty certain that you have FH.

Have you been referred to a lipid clinic?

[Aliwally]

PS to above. I think I've read your comments on the Facebook site as well!

Definitely push for a referral to a lipid clinic, you may have homozygous FH and that needs expert treatment that you GP may not be experienced enough to provide.

Genetic testing is much more variable in this country than in America.

There are people on this site who have homozygous FH and they will also be a fantastic source for you. Also contact HEART UK.

Hope I haven't overwhelmed you, there is lots of support out there.

[slainte123]

Thanks... I was tossing up whether to push for referral to lipid clinic and you have helped m to decide. I will call my GP on Monday. I can't afford to wait with a level that high. Also due to have spinal surgery in next few months or so and not want to freak the anaesthetist out ok much. Would hate it to affect my surgery.... I am soaking up all this info. :).

[slainte123]

P.s. have discovered Heart UK site. Thanks!

[sandybrown]

Hello,#Cholesterol 19, high!

More questions to get a better understanding on Cholesterol.

Are yuo able to offer more details on you sex, age BMI etc?

Did the bollod test do tC,LDL,HDL and TGC? how about yuor BG?

What was the reason for blood test?

Any plans for life style change? What statin are you taking? check for side effects.

[slainte123 in reply to sandybrown]

Hi. I don't have any more info than 19..... Am calling GP tomorrow so will ask for further details. Ditto re statins as haven't picked up prescription yet.. Only had call from GP on Friday. Will advise when I know more.

[Miggins]

You might well have Type 3 hyperlipidaemia, which I think tends to give rise to such ridiculous levels. Mine hit 19 post-menopause whereupon I got the diagnosis and started Statins. I had xanthomas which had by and large disappeared after six months.

[slainte123]

Hi. That is interesting... I am 48 and only just found out about it. Most of my xanthomas I was told were eczema so have been using Eumovate as advised by doc.. Wondered why didn't work... Orange hand creases was reason for blood test.

[Miggins]

I'm pretty sure that sounds like Type 3. I am taking Atorvastatin 10mg and my level fell to 7.6 after a couple of months. Although it's a fairly rare condition (about 1 in 12000 I believe), I think it has been understood for quite a while and responds very well to statins if you tolerate them. Assuming that you have a healthy lifestyle then in many ways it seems less dangerous than FH.

[Aliwally]

Getting a definite diagnosis is another good reason for getting referred to a lipid clinic ASAP.

[slainte123]

Thanks all! Will get on to the GP tomorrow.... Night

[sandybrown in reply to slainte123]

Hello,

Was it good news for you? do you have to go on statin medication?

[slainte123]

Hi. Having another blood test tomorrow to get more detailed result then referring to lipid clinc. GP has also been speaking to biochemist which I am pleased with as it Is a learning curve for him too. Should know more in few days.

Busy week as having MRI on Wed re spinal surgery. Never rains but it pours!

[slainte123]

Thanks Traci. I don't want anything holding up my surgery so am pleased to hear about your case. I have xanthomas - orange on my palm & finger creases, lump on one finger & elbow... I have some small bumps on my achilles & knees which I will have looked at. Will be relieved to have my heart checked.

[baby7567]

Hi,

I am from france and i have FH (heterozygous).

I also have xanthomas on hands and achilles tendon.

The ones on both hands have been removed a few months ago surgically.

I am going to have an operation this week to remove the ones on my achilles tendon.

Would love to hear from you if you have same as me.