Do I have FH?

I have had cholesterol deposits around my eyes for a number of years and around 7 years ago had a cholesterol check which showed total cholesterol of 13.2

I was put on 80mg simvastatin and asprin daily. Within a few days I had so much muscular pain that I stopped the statins. Shortly after I changed Doctors and the cholesterol problem seemed to fall by the wayside. The significance was never explained to me and in fact the level, being so high, got treated as a bit of a joke.

Recently the cholesterol deposits seem to have got bigger and I visited my new Doctor who confirmed that the deposits were cholesterol and said that with the previous result it was almost certainly hereditary.

After having a fasting blood test last week the results have come back. Triglycerides are normal, HDL is 1.1 and LDL is 8.5

Doctor is trying me on atorovastatin 20 mg and says I mustnt stop taking them (I am already starting to have discomfort in my arms and shoulders).

My Doctor said that I almost certainly have Familial Hypercholesterolaemia. Does anyone know whether these levels are indicative of FH? Could one have this level of LDL and not have FH?

So many questions but I seem to have done nothing but think about this all week and would be greatful for any information you may have

Thank you

Amanda

13 Replies

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  • I would get onto the Diabetic U.K website with this question.

  • Hi Amandac,

    I agree with Traci, your LDL levels and the cholesterol deposits are almost certainly FH. Do talk to the HEART UK helpline and you should be referred to a lipid clinic as it could also affect other members of your family.

    Statins are the usual treatment, but if you really can't tolerate them (I can't) there are other drugs or combinations of drugs, but this is where you need expert advice. Apheresis, as Traci says is also an option now.

    Good luck, keep us informed. I actually don't think cholesterol levels that high are much of a joke!

  • Hi Amandac I would reiterate what Traci said. You do need to ask your doctor to refer you to a lipid specialist. Keep this forum involved on your progress and do contact the cholesterol charity - HEART UK - they will be able to answer all your questions.

  • Before going down the statin route it might be prudent to check out all options. Frank Cooper (Who posts on this forum) has FH is 63 and takes no medication. His approach is through diet and his information and videos can be found on YouTube.

  • Could you itemise several days of your dietary intake, please?

  • I have been seriously dieting for the last two months. I also joined a gym in January and have been going 3/4 times each week - this was all prior to my recent blood cholesterol test. My diet has been virtually fat free. Porridge for breakfast (made with water). Lentils, rice, chicken, bowl of cereals, fish. No butter, cakes, bread, biscuits, chocolate, oil etc. In fact nothing nice at all!!!

    God knows what it would have been had I been eating normally!

  • Oh Amanda, where to start? Your lamenting of the loss of biscuits, cakes, bread, oil and chocolate could speak volumes about what you consider 'goodies'. Unless you start to enjoy real food, you could be in for a hard life!

    Let’s commence with the ancient Egyptians. Many of them had a grain based, low-fat diet. They suffered heart disease, osteoporosis, and vitamin deficiency diseases as a consequence.

    Please take a look/listen to this: heartuk.healthunlocked.com/...

    Some further points to consider; what’s the most extreme case of non alcoholic fatty-liver disease? Foie gras? What do they feed the ducks/geese with to achieve that? A grain-based, low-fat diet.

    What’s a quick way to deplete your liver of vitamin A? Eat lean meat. The Western world has neglected the wisdom gained by ‘primitive’ people. The only food combining rule of diet they all seemed to arrive at is the need to dilute protein. That’s because too much protein results in ‘rabbit starvation’, a severe reaction that can result in death. Luckily, nature provides fat along with the meat, particularly in the organs which are also rich in vitamins.

    Of course it can be argued that the carbohydrate recommended in a ‘balanced’ diet is sufficient for dilution of protein. When Government healthy eating guidelines were devised advising reduction in fat consumption, carbohydrate was thought to be harmless. The latest studies illustrate that high glycaemic carbohydrates have detrimental impacts to health. Further, half a century of demonising fats (including natural fats that our ancestors ate through two million years of evolution) has only found circumstancial evidence. Meanwhile the UK has decreased its fat intake, largely maintained its protein intake, and increased its carbohydrate intake. The result has been a massive increase in overweight and obese people. Have they all decided to be lazier and greedier than previous generations?

  • What are you suggesting is the ideal diet? I agree that too much processed foods are a no no but beyond that I am not sure what constitutes the right foods to eat.

  • Hello again

    Thank you so much for your answers and support. It feels so good to be able to communicate with people who understand this problem. Since finding out the result I have done nothing but research and have been seriously alarmed. All the info seemed to be suggesting that my levels were extremely high but I have found it difficult to get my head around this. There is nothing wrong with me! Heart disease has never been a factor in my life. or rather I thought it hadnt.

    My father died at the age of 62. He had been dead for 3 months when found so their was sufficient decomposition for the coroner to be unable to determine true cause of death. However it was suggested that the likely cause of death was a heart attack. We were estranged and I knew little about his life and nothing about his parents and siblings. It seems likely therefore that if it is FH it did come from his side.

    This has come as a bolt out of the blue to me and has truly alarmed me. I have four children and am now worried for them. I have spoken to each of them and advised them all to get their cholesterol checked.

    i must admit it feels good to be able to share these concerns. I hope I havent gone on too much!!

    Amanda

  • Hi amandac - welcome to the site. I have FH which was discovered when I had a blood test aged 30 and my cholesterol was 14.8. Also unsure which parent I inherited it from - dad died aged 58 of lung cancer and mum died aged 85 of nothing heart related. Both were smokers. My brother died of a heart attack aged 52 but also had a complicated medical history having had kidney failure and a transplant. He did have high cholesterol but was a smoker and drinker. Unfortunately I have passed FH onto both my kids - a fact I find very hard to deal with. I would never have had kids if I'd known this would happen. Have been on various statins for 17 years now and finding the side effects hard to tolerate now.

  • I too find it hard to accept that I may have passed something damaging on to my kids. I am just hoping and praying that they havent got it.

    You mention side effects. which side effects are you experiencing that you are finding it difficult to tolerate? I know virtually nothing of statins (this is all new to me), I just know that when I had them before I had a lot of muscle pain

  • I have progressively worsening muscle pain, mainly upper back and now down my arms. If I exert myself my muscles ache worse for days. On 40mg rosuvastatin I had horrible tingling/buzzing in my legs, feet, arms and hands. Suffer with low mood, irritability and loss of libido. Feel a LOT older than my 47 years. Can't say 100% if caused by statins but I am inclined to think so. Not everyone suffers the same or any side effects and when I first started on statins I don't think I had any problems so it's either long-term usage or just my age! I now have to decide whether to put my kids (aged 14 and 9) on statins or not. Hard choice.

  • Hi Amanda, can i really reiterate the advice you've been given. Diet lifestyle are important as is regular exercise and will improve general health and bring levels down a bit but i think unfortunately with levels this high may not be enough. High cholesterol due to FH is different to elevated cholesterol because of a poor lifestyle. In FH your liver simply can metabolism and process cholesterol so it builds up. I think aswell that it is likely you have FH. Ask for a referral. Stay in touch on here and let us know how your getting on.importantly please don't feel bad if you have passed this on, feel relieved that you've found out and can get your kids checked. If they're positive and diagnosed young they can make appropriate changes now and will be best armed heading forward to minimise any problems this may cause. Knowledge is power.

    Researching thoroughly is a really good idea... Just be critical in how you assess information you are reading. There's a discussion on this going on which may help?

    Please do not panic though... There are so many options you just need to suss out what works for you. I am on apheresis should you have any questions about that feel free to ask. ( am also on rosuvastatin, have been on various statins for 18 years... Luckily i have been okk on these so far. My pre treatment levels were 18! They nise average.4 so your levels are entirely copable.

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