Hello, this is all new to me but I am desperate for some advice.I am 44, ex smoker and I don't drink alcohol.I have felt unwell for 3 + years and had numerous tests with no answers.
6 months ago I woke in the night to my left arm twisting & contorting & a strong pressure around my neck/throat. The following days my arm was twitching and uncomfortable, then my left leg started. I went to the doctor and was told to drink more water (I drink 1 - 2lts a day already)
I wasn't happy with this and decided to do a few private blood's.
I struggle a lot with mental health and have had a restricted eating disorder for 30 odd years, I rarely leave the house (but try to be as active as possible) and run a small business to keep busy. I have been waiting since August 2021 for a dietician/nutritionist.
Turns out I had never had a my cholesterol checked.
Both the private & gps test came back high 7.6 total cholesterol
I also had a private PLAC test and that came back high 1116 (double for a woman of my age)
I have been put on 20mg Atorvastatin and told to come back in 3 months.
My mum has high cholesterol also and her dad had a heart attack and passed away at 62.
I guess I'm just wondering if I should just leave it and see how get on with the statins or should I push for more answers (as I'm still in daily pain with my left leg twisting)
Really appreciate any advice, I can't think straight, struggle making decisions and so forgetful, I live on my own and it's all such a worry.
Thank you ❤️
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Rachel_x
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The only advice I can offer relates to your cholesterol . Whilst statins undoubtedly help to lower cholesterol to levels that are currently believed to be better for you, and alter the balance between 'good' and 'bad' cholesterol, you can also help matters further by so called life style changes, which mostly cover diet, exercise, and body weight control. As an ex smoker and tee totaller you are already part there. The BHF site has plenty of tips about life style changes including the 'Mediterranean diet'. Finally cholesterol management is a lifetime thing but is not really a big deal and nothing to worry about. Over twenty five years ago I was found to have a cholesterol level of over 9 but with statins and life style I am still here managing to annoy people 😆
My GP referred me to a lip clinic It took 5 months to hear anything but she’s so understanding has promised to get everything under control she has done more blood tests than I’ve ever had before an a sleep study so just gotta wait for my follow up. She says if she gets my bloods within all the right ranges any side effects from the statins are greatly reduced. So stick with it and get that referral
You probably need an other blood test for familial hypercholesterolaemia (FH), a genetic condition, is best to contact a cardiac nurse at the British Heart Foundation for further guidance. Good luck!
When my total cholesterol of over 9 was diagnosed over 25 years ago there was no screening programme and I have never been offered any FH tests of any sort, so I am not sure what triggers that. However NICE publish guidance (as below) and armed with that it might be something for Rachel_x to discuss with the GP when the 3 month statin trial is ending although a normal total cholesterol of 7.6 at age 44 looks to be borderline, but maybe worth pursuing the tests.
Hi Rachel, the statin dose you are on is a low dose and should help manage cholesterol levels.I am not a clinician but your arm and leg problems sound much more like a muscular spasm of some sort. You also mention you have had long term eating disorders. I'm sure you are very knowledgeable on the issues and are awaiting a nutritionist assessment. I guess it's possible that you have some dietry ion imbalances , eg potassium, which may be too much or too little, or something similar that might interact with nerves and muscles. Too much too little can often be impacted by self medication especially use of supplements.
It's very important that you can manage your anxiety in order to help the specialists give you the right focus and the benefit from their expertise. You must stay grounded in the factual and prepared to get the right help. All people can do here is respond either to very specific questions or provide generalised support and encouragement.
Sounds like a plan. Anxiety is so disabling and I'm sure is harder to manage living alone. But it is a distractor from important stuff. After a stroke, and with no immediate support found from the BHF pages a link to Couch to 5K an exercise programme. There is also Active 10. This was enormously helpful, as I was actively helping myself and the success reduced anxiety and boosted self esteem. My cardiovascular system a year on is much better too. It's a bit addictive but in a good way. I think my anxiety levels are now normally healthy as I manage my health issues forward.
Hello Rachel, I am sure the statins will help. Appreciating you said you are active, you don’t smoke or drink so you are doing all the right things. Try and be kind to yourself and relax if you can. I would follow up on the tests if you continue to get the discomfort. I am not sure of the answer but if you have a restricted eating disorder I wonder if you are getting all the nutrients you need though I appreciate this has been for a long time. Take good care and do chat to us hearties we are here for each other x
Thank you for all the replies, I'm currently selling my house and relocating to the coast to live with my daughter so I'm hoping to start a new, healthier more positive life...thank you again ❤️ x
Rachel I think all the above answers are spot on. I didn’t have my cholostrol levels checked until by chance at 77! It was sky high and immediately went on statins same one as you.
Going forward for you is looking good. Being with others helps anxiety and the sea a great calmer, try short walks on the beach
Keep in touch as this post is full of good sound advice from others with the same experience and good luck going forward.
I don't know your financial circumstances but wonder if a thorough Health MOT at a private hospital might allay your fears or at least PInpoint those concerns you need to get long term attention for, either by medication or health style changes.
I would like to ask a question first if that is okay. When you, or others, say that your cholesterol is 9, are you meaning the ratio of total cholesterol to “good” cholesterol? If so, that 9 sounds very high. I had my blood (lipid panel) tested last week, and that was how the ratio of total to “good” was reported. When I read that number, I thought that perhaps genetically you might be predisposed to have higher cholesterol numbers. Someone, I believe, suggested that you might have that tested by your doctors and I agree.
I never really thought of my own cholesterol as being very high, but I did develop blockages and I had a heart attack last March. My doctor prescribed Atorvastatin too. I believe that it can be prescribed in 20mg, 40 mg, or 80 mg amounts. The cardiologist originally prescribed 80 mg, but I don’t like taking huge amounts of drugs, so I talked with my family doctor and began on 20mg. Long story shorter, that amount didn’t seem to be helping me and a new cardiologist prescribed 40 mg. That seems to have helped.
it’s good that you are checking back with your doctor in one or two months to discuss the Atorvastatin and whether it is helping you. Someone else mentioned lifestyle changes too, I have been trying that for the last 11 months. I now eat lots more fresh vegetables—washed and raw if possible—but also steamed or cooked in soups, etc. I eat fruits daily like bananas and blueberries. Also, I have cut portion sizes, and I try to really cut back on any type of sweets. I say that when I am just popping out to buy an ice cream cake for my grandson’s 16th 🎂. Lol 😆
I also thought that someone gave you good advice about possibly being too low or too high in certain nutrients and/or vitamins. I found out last week that I have a very low level of potassium in my body, so the doctor prescribed a supplement.
You didn’t mention whether you had any other factors such as high blood pressure or possible diabetes which can both impact your heart health and that might need attention too. My main thought is that you need to talk with your doctor again about this persistent pain/twisting feeling in your arms and/or legs. I am sure that there must be testing that they can do to find out what is causing all of this.
Congratulations to you on moving near the sea. That sounds so lovely and peaceful. Perhaps less stress and having family around will also help. I wish you the best, but I hope that you will also talk more with your doctor.
Thanks for your reply, I find it all very confusing to be honest, these are the results of the PLAC test and my total cholesterol is 7.6 and LDL was 5.77, I spoke to the doctor today and expressed my worry and I'm now on 40mg Atorvastatin, my recent blood tests came back 'abnormal ' but was told it was possibly just inflammation as my white blood count was high. No sign of diabetes and I haven't had my blood pressure checked for a couple of years (I expected the doctor to do it) I'll pop to a chemist and get that checked, thank you ! Once the move is done I think I'll look into a health MOT, just for a bit of reassurance, it's the whole invisibleness of it all that freaks me out, but this forum has made me feel so much more at ease, I'm so grateful for all the bits of guidance and advice ❤️ and Happy Birthday to your grandson too ! 🎂
Hi Rachel,your story sounds quite similar to mine as I was seeking answers and tests were all normal with a raised cholesterol of 6.What is your blood pressure doing?
You can purchase a home bp machine for around £25 now and can be taken without stresses in your home so no white coat syndrome.
Do have your kidney function tests done .
My GP constantly ignored my low potassium results,despite my questions as to why this was happening multiple times.
Turns out to be Conns syndrome, an endocrine disorder.
Think it started in my 40's ,Dr dismissed as menopausal reasons.
Hope you get some answers, don't leave investigations too long though.
I have the same score as you - lower cholesterol but the very high plaque score. I'm 48 and otherwise healthy. Did you figure anything out ? I don't know what to do - I'm just taking 40mg statins. Sounds like the move was a good thing!
Hi, I've just tried to improve my diet and sticking on the 40mg statins, after 6 months on them my plac score halved! I try not to think (worry) too much and have faith in the statins 😊
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