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Familial hypercholesterolemia (FH) Inherited high cholesterol

(21 Posts)
Grandmama Mon 20-Nov-23 18:01:12

There was a thread on statins a while ago. I've been referred to the Lipid clinic (appt not until February) because of my high cholesterol and blood pressure and a number of sudden deaths in their 50s of members of one line of my family. I'm otherwise healthy - take a lot of exercise, not overweight. Recently started atorvastatin (20mg). Do any grans have experience of FH? Also the statin is causing awful stomach bloating, most uncomfortable.

midgey Mon 20-Nov-23 18:04:41

I have all of the above! I recommend taking peppermint around the same time as the statin. I take 80mg and was really struggling with wind and bloating, the doctor suggested peppermint and I hate to have to admit it works a treat.

Oldbat1 Mon 20-Nov-23 20:05:57

Yes i have FH and on 40mg of Atoravastatin. I take it in the evening. Side effect is wind!

Redrobin51 Mon 20-Nov-23 20:20:35

Yes I have it. An absolute pain as like you not overweight and eat a healthy diet. Unfortunately, none of the statins suited me until I tried Rosuvastatin. So many drugs have unwanted side effects that it is often finding the one by trial and error that gives the least. Yes peppermint oil can often help with bloating. Hope you can find a solution.

Grandmama Tue 21-Nov-23 11:17:38

Thank you for your replies. My taste buds have altered - my food, tea and coffee do not taste as nice and I have a slightly unpleasant taste in my mouth even after cleaning my teeth. I'll try peppermint oil for the wind.

Gardenersdelight Tue 21-Nov-23 11:21:35

I've FH take 20mg atorvastatin which has worked really well
Did see consultant at lipid clinic and have had genetic tests
But she said with FH lifestyle is not going to make much difference to levels

OmaWal Thu 23-Nov-23 11:13:15

I was tested for FH when Nottingham Uni Hosp ran a study; I did not have it. Atorvastatin in the cheapest one that can be prescribed. I had unpleasant side effects, as did my sister. I swopped to Simvastatin 40g and they suit me. As my GP pointed out we can have healthy diets, take exercise etc but you cannot get away from your inherited genes!

GrannyToGirls Thu 23-Nov-23 11:16:30

I also have FH and take 10mg Atorvastatin daily after Simvastatin gave me leg cramps at night. I don’t get any side effects from such a low dose so it might be worth asking if you can reduce your dose, Grandmama. They’ll need to monitor you, of course, but it might do the trick.

Marg75 Thu 23-Nov-23 11:30:16

I am taking Atorvastatin and it gives me an awful taste in my mouth and a coated tongue. I have lost some of my taste as well. I was on Simvastatin which gave me muscle cramps. Thinking of stopping altogether.

Marg75 Thu 23-Nov-23 11:31:27

Forgot to say, I'm only on 10 mg.

Bella23 Thu 23-Nov-23 11:36:48

I stopped altogether because of muscle cramps about 12 years ago but was told to go back on them, I now take Rosuvastatin luckily so far so good.

Annie25 Thu 23-Nov-23 11:46:45

I also have FH....had terrible muscle pain and leg cramps .Dr changed me over to ROSUVASTATIN so far no side effects at all .

luluaugust Thu 23-Nov-23 11:52:13

Atorvaststin was a disaster for me as it affected my already bad hearing and tinnitus. Dr changed me to Rosuvastatin,low dose, so far so good. I was very reluctant to take the stains but the FH made it impossible to refuse

nipsmum Thu 23-Nov-23 13:06:20

I have been on Simvastatin for approx 20 years. Absolutely no problems that I can remember. I have reduced the fat in my diet, but nothing else.

Cornishgreenhouse Thu 23-Nov-23 13:16:59

I have FHC and take Atorvastatin 20mg at night. I had headaches to start with but they settled quickly. My cholesterol dropped from. 7.8 to 2.9 in 6 months.

Gwenisgreat Thu 23-Nov-23 13:19:18

I believe I have FH. I have been on Simvastatin for about 3 years, it never occurred to me the muscle cramps I get could be associated with the medication! Shall have to ask for a change!

Lottie53 Thu 23-Nov-23 14:11:23

Please don’t stop them. Speak to you GP re changing to a different one.

blueberry1 Thu 23-Nov-23 15:23:17

I have FHC and, after trial and error ,I now take Rosuvastatin and Ezetimibe with no side effects.
You should ask your doctor about these alternatives, they may be suitable for you.

MrsBoot Thu 23-Nov-23 16:39:37

I have FHC and have been on 10mg Atorvastatin for some years, with no noticeable side effects. My GP considered I no longer needed any further blood tests, so no idea whether I need a higher dose. Have just ordered a home testing kit online, costing over £70 (with discount). I hope it's reliable!

2420mags Thu 23-Nov-23 17:16:37

Mrs Boot - l think you need to back to GP / practice nurse and have your bloods checked . As far as l know anyone on these drugs should have yearly blood tests . l have not bothered, although l have had a reminder from my surgery last month, and when l went to order my meds there is a stop on them and an urgent note to go for yearly check of bloods and drug review. l cannot moan that l have not been been well cared for

Nanatoone Fri 24-Nov-23 08:10:10

I’m on atorvastin without side effects that I’m aware of. My cholesterol was 8 and is now 5.1 (first test in years!). My triglycerides are too high as I eat too much fat apparently, so I’ve made changes but it’s clearly familial otherwise it would be much lower. Apparently it’s ok at this level though so will keep on taking it as I’ve just lost my sister to an aortic aneurysm and her PM showed a lot of damage to vessels due to cholesterol.