My GP suddenly told me I have familial... - Cholesterol Support

Cholesterol Support

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My GP suddenly told me I have familial cholesterol @ 10.27. Feeling a bit shocked and hate taking tablets so I have not yet. Advice please?

velvety profile image
12 Replies

I'm really worried about losing my hair if I begin taking stations :(

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velvety profile image
velvety
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12 Replies
MikePollard profile image
MikePollard

You have two choices. Go on meds or do a lot of research.

Heterozygous FH (the less serious and most likely type) is not a death sentence.

In the bad old days before the mid seventies when butter, cheese, lard, dripping etc were staples and not the 'killers' of today, people with FH lived normal lifespans totally unaware they had any disorder.

Frank Cooper, who occasionally posts and comments here, has FH, is in his 60's and does not take statins:

youtube.com/watch?v=zKe60-y...

Before going down the tablet route and the all to often wretched side effects I suggest you look at Frank's stuff, trawl the internet and see whether simple diet changes may be the answer.

velvety profile image
velvety in reply to MikePollard

Thank you and I will look at Frank's comments

Wyvon profile image
Wyvon

What makes you think you will lose your hair??? I have taken statins for ten years now and, apart from keeping my cholesterol levels down to a safe level, I have had no side effects. I have always had thin, fine hair so, had there been any deterioration in that, I should certainly have noticed.

If you have been diagnosed with FH, I highly recommend that you look at the HEART UK website as this charity was set up by people like you and for people like you. If you could possibly get along to their Annual Conference's Patient's Day this July, you would learn so much about your condition about how to live with it and manage it and you would meet other people with the same concerns. I'll be there so you would already have one person to make you welcome.

velvety profile image
velvety in reply to Wyvon

thanks - I will look into this and definitely come if I am free on that day

Aliwally profile image
Aliwally

Yes, do go to HEART UK website, as you need to get all information from all sides before you make any decisions about your health.

You don't give any details about your age or family or whether you have been diagnosed with the "gold standard" genetic testing for FH. If you are middle aged (like me) it may well not be FH , but one of the other inherited lipid disorders about which there is much confusion, especially amongst GP'S. There are other older drug treatments if you decide to go down that road.

velvety profile image
velvety in reply to Aliwally

Hi Aliwally, I am a (young-looking) 57 year old. Unfortunately not in touch with either side of my family so I don't know whether there is a history of dying from heart attacks. There is so much more to this issue than I had realised.

florence5 profile image
florence5

Hair loss was listed as one of the possible side effects on the leaflet with one of the statin drugs I tried. I cannot remember which one, as I tried so many in quick succession. I took particular notice of this as I already suffer from occasional alopecia. My hair loss did increase while taking statins, but it would be impossible to prove that they were the cause in my situation. I don't think it is one of the more common side effects like muscle pain, but if you Google statins and hair loss there is some information on the subject. Personally, I will never take statins again as I had such a bad experience, from which I am still recovering. However everyone reacts differently and the only way for you to know how you will react is to try them.

PS I have just checked on NHS Choices and the two statin drugs where hair loss is mentioned as a side effect are Simvastatin and Pravastatin.

velvety profile image
velvety in reply to florence5

Thanks Florence5: my statin is Atovastatin (which I have not taken yet) and you have reminded me to read the side effects leaflet.

velvety profile image
velvety

Thank you ...

velvety profile image
velvety

Good to know that hair loss probably won't be an issue. Love my long hair and would hate to lose it! I think you are right I need to go back and see my GP as I have not been tested for anything other than my cholesterol level.

dizan38 profile image
dizan38

Having taken statin (atorvastatin for about 4 years since 20080, I did not have any outside side effects as you described, perhaps should be avoided with alcohol, and any other medication .Trace of talk could be found in my blood under various blood count due to (old formula)first generation of statins which was later replaced by starch .Don`t worry so much .Always read ansd respect the manufacturers recomemdation>Avoid statins From France and Belgium

Aliwally profile image
Aliwally

Hi Velvety,

I am a "young looking" 60!! Good advice to ask your GP for a referral to a lipid clinic, you might get some more information.

I could not tolerate statins but take a much older drug called Cholestagel which basically absorbs bile and lowers cholesterol, not as effectively, but there are alternatives to statins. Some people on this site have had wonderful results with diet, go to HEART UK website for more information.

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