APS and statins

I know there was a post about this recently but I can't find it. I have been prescribed statins today as I have high cholesterol despite not being massively overweight and eating a relatively healthy balanced diet. My gp has said that she thinks it's a risk with the Hughes and being at higher risk of strokes/heart attack anyway I need to take them. My late dad had high cholesterol and I believe that it has come down from his mother (a theory backed by my rheumatologist and gp). I was wondering if anyone has any thoughts or experience of this combination.

Hope you are all doing ok

19 Replies

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  • Hi a number of people on this forum are on Statins alongside their other medications for Hughes Syndrome/APS, if you use the search bar at the top on the right you will find posts related to Statins regarding any discussions. Another thing that appears to be connected with rising cholesterol levels is an inadequately treated Thyroid problem: dailymail.co.uk/health/arti...

    mayoclinic.org/diseases-con...

    Unfortunately currently there is an over reliance on the TSH test which in my opinion is often unreliable.

    MaryF

  • Thanks Mary I will have a look at the other posts. Also will look at those articles - they test my thyroid quite often and it always comes back ok according to them despite my gran having had thyroid problems alongside auto immune issues x

  • Mine came back normal for years, I am a member of Thyroid UK, and it is agreed that the TSH test is unreliable. Actually it did show up on there in the end, however I had already become educated on the matter and had self tested via a testing lab that did more extensive testing, and was found to be severely hypo thyroid. Thyroid UK have a forum on this platform and this forum is the NHS's choice of forum, their charity pages are good also. Often it can come on insidiously and patients are told they have 'Fibro'! MaryF

  • Funny you should say that I have had an active diagnosis of fibromyalgia for just over 3 years along with depression x

  • Here is the list of symptoms, thyroiduk.org.uk/tuk/about_...

    MaryF

  • Also, this is very education, I sent this to many medical staff who agree they learned loads from reading it in detail, and have passed it on. thyroiduk.org.uk/tuk/TUK_PD...

    I have got many friends who have been told they do not have a Thyroid problem to do recommended Thyroid testing and they all came back showing they did have. MaryF

  • Thank you for all this information I will have a read through it x

  • Drs need to do a complete thyroid panel and not just TSH. It's crucial to test T3 and T4

    Many people don't make T3 without the addition of Cytomel to

    Synthroid. That combination has been the recommended protocol of American Medical Association since at least 1998.

    Here is one study with more information.

    The way it was explained to me is that most people's bodies produce T4 when given T3 (synthroid). But many people - including me - don't product T4 (cytomel) unless it is taken in addition to T3.

    I feel 1000% better on synthroid & cytomel combination.

  • I take natural desiccated thyroid which suits me much better, I notice Hilary Clinton is on Armour! MaryF

  • Also there is a terrible culture here in the UK of GP's if they think to do so, asking for the T3 to be tested and the Labs refusing, which is why so often people are labelled Fibro.... as the complete picture is not seen, my TSH gets done locally and in London but I use a private testing facility to see what my T3 is doing, and of course I keep my iron, B12 and D up and at good levels. MaryF

  • Prof Hughes advocates Statins with Hughes but it is a good idea to get the Thyroid right anyway especially if the old cherry Fibro has raised its head. You may well have it but if the Thyroid is out it affects so many other things.

  • Yes I'll mention it to my gp when I see her again in a couple of weeks and see what she says. If that fails I'll give my rheumatologist a ring as she is on the hsf list of doctors.

    Many thanks x

  • I was given statins about 3 years ago because of high cholesterol, but I started suffering with aching muscles all over and when I read up on it found this was a common side affect so I stopped taking them and told my doctor I would not be taking them anymore. My cholesterol now seems to be ok so not sure whether I really needed them in the first place.

  • I'm wondering if I will be able to tell as I have fibro anyway I must admit that the list of side effects did worry me

  • It's the ratio of your cholesterol that matters.

    My cholesterol hovers around 200, but don't want to take statins because of the muscle issues and my ratio is fine because i have lots of the good cholesterol.

    Some drs want to get cholesterol down to 100, which strikes me as completely ridiculous.

  • Here's the 1999 article from New England Journal of Medicine on why to use the combination of T3 and T4

    nejm.org/doi/full/10.1056/N...

  • My cholesterol has always been high, and same with my mom's and my sister's. My sister and I are both at a healthy weight and have pretty good diets. I was told about 3-4 years ago by my Dr. that if I didn't get down my cholesterol on my own that she would have to put me on statins. Since I'm 31, she didn't want to immediately put me on medication (although this was before we knew I had APS).

    Since then, I have gotten my cholesterol down about 40 points, although it is still higher than normal. My rheumatologist never said anything about my cholesterol and she had all my records. For me personally, I just regularly request that they do a cholesterol work-up; definitely more often than a normal healthy person would get it checked.

  • The current theory about cholesterol is slowly getting debunked. I am 41, 110 lbs, healthy non smoker and non drinker. My cholesterol hovers around 250. My dr isn't convinced cholesterol testing is even relate to. She did a test called VAT which is a test of the subtraction of the LDL. You can have either type A or type B. One is small dense pebble like cholesterol and the other is fluffy cotton ball type cholesterol. I have the fluffy type which is not harmful. In fact, from a heart disease standpoint, cholesterol is quickly losing favor as a contributing factor. Statins are proving to show they don't even really work and cause a lot of other issues. There are other, better, more accurate tests for cardiac disease. Here is some food for thought with references to several reputable journal articles...

    articles.mercola.com/sites/...

  • I've been taking statins for the past few years for my high cholesterol. I went off of them for a few weeks and retested to see if I needed to stay on them. It was decided that I do. I've not had any adverse reactions with the meds.

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