I have FH !

[vanessa1956]

I have just been diagnosed with FH......at 58 years old.

Most of my estranged father's family did not make it to 60.

Is it too late for me to worry about anything?

[YvonneD]

No, no, no - definitely never too late. You can start undoing any possible damage that has already occurred. Lots of advice out there, so I'll just mention a few suggestions from me:

1. Get referred to a lipid clinic and go armed with a list of questions for the consultant, lipid nurse or dietician there.

2. Contact HEART UK - the charity that was set up thirty years ago, by people with FH for people with FH. They have specialists who can advise. If you can attend the Patients' Day at their AGM in Warwick in July, I highly recommend that. I have been going for thirty years and always learn something new - from world leaders in this field and from fellow patients.

3. DON'T WORRY - that is bad for you.

Being female will have helped you up to the menopause but now you will have to start helping yourself with diet and exercise. Let this forum know how you get on - we are all in similar situations and only too happy to help.

[jokerr22]

I am 36 female and have had a triple heart bypass and have FH so I don't believe it is ever to late. This could of already done the damage have you been checked? Also it is hereditary please make sure all of your family members are made aware. We really need to spread the word about this condition.

[Aliwally]

Can I ask if it's definitely FH and how you got diagnosed?

If it is FH you should be referred to a lipid clinic so that they can assess you.

I have read (somewhere!) that FH deaths mostly occur in the younger age group, but please don't take my word for that and research it or ask lots of questions. HEART UK is a good place to start.

[YvonneD in reply to Aliwally]

Aliwally - and anyone else interested.

Don't know where you read that but FH can kill at any age - depending on the severity of the condition. I once had it described to me in very simple layman's language which helps to explain the condition. Our liver makes "good" cholesterol (HDL) and sends it around the body to all the cells that need it. Once "used up" it becomes "bad" (LDL) cholesterol which the blood stream delivers back to the liver to be disposed of with other bodily waste. Imagine the liver has two hands, with five fingers each, removing and disposing of the LDL cholesterol (the baddy). In a healthy body, this is what happens. In FH patients, they do not have ten fingers. If you only inherited the gene from one parent that gave you only "nine fingers" then, right from conception, a tiny bit of LDL is being recirculated and will eventually build up in an artery and cause a blockage (heart attack or stroke) so, without diagnosis or treatment you could live a long life. If you have "five fingers" missing then it will build up faster and cause the blockage earlier. If you are unfortunate to inherit these genes from both parents, then you are at risk at a very young age. (Read Rianna Wingett's tragic story in the HEART UK Newsletter).

I would also suggest to Vanessa 1956 that she tells this to all her children and siblings plus any blood relations that she can contact. Having the faulty gene, and not knowing, is a recipe for disaster. Knowing about it and getting tested puts you in control.

The good news is that each child born to someone with FH has a 50/50 chance of inheriting the faulty gene. If they inherit, it can be diagnosed and treated. If they don't inherit, then they cannot pass it on - it cannot skip a generation. A good reason for all FH patients to persuade their blood relatives to get tested.

[vanessa1956 in reply to YvonneD]

Yep ....I was given forms to pass to my daughter :-(, and my brother and sister.........I also contacted cousins in Singapore, who were all to aware of the faulty gene.....it was too late for one who died at 51.

[vanessa1956 in reply to Aliwally]

unfortunately diagnosed at FH clinic, awaiting more blood results for which of the 3.

[vanessa1956 in reply to Aliwally]

Apart from blood tests, I have the "grey" rings around my pupils, and thick hamstrings too.

[Aliwally]

Rianna's Wingett's story was absolutely tragic and shouldn't have happened. She had the homozygous form which is much rarer and much more dangerous.

I have done a lot of research on FH and much more needs to be done , particularly about accurate diagnosis. My main point was, is Vanessa absolutely sure she has FH as there is so much confusion out there about it and accurate diagnosis seems to be a particular problem. I agree that FH is much more pernicious as your levels are high from birth, unlike the other forms such as familial combined hyperlipidaemia ( the names don't help either!!). I will try and research the article where I read that one particular age group is particularly at risk and deaths are higher in that age group. I agree that Vanessa needs to be assessed at a lipid clinic where hopefully she will get some more information. I did not imply that she should be complacent about it.

[vanessa1956]

I have got a feeling that both parents had passed it on.....knowing all 4 of my uncles and aunties from my father's side , did not make it to 60. And though my mother is 88, her brother and sister died in their 40's....

[Aliwally]

It does all sound pretty definite for FH. The lipid clinic will want to start you on statins (they probably have already). Some clinics will also do a carotid artery scan which will give an indication of how your arteries are. There is also a calcium scan, but I don't know anything about them.