ET, high cholesterol and statins

[lizzieET]

HI guys. I've just had a cholesterol clinic appointment and learnt some interesting stuff which I'd like to check out and share with you. My consultant there (fabulous man!) gave me 50 minutes of his time, shared a paper with me and listened with fascination to me, and spoke a lot of sense, with lots of medical and research backing.

So I have high cholesterol 8.6 at the moment and he thinks it may be familial as my Mum has a similar count. He's particularly interested because I have ET and although they are not related, he wonders if the platelet activity might impact the cholesterol.

The really interesting thing was that he read in a paper by the wonderful Claire Harrison that there is an argument for putting ET patients on statins. Now apparently there are 5 statins and I can't take 2 of them because the interfere with Hydroxyurea, and he is mindful of the potential side effects of statins.

I have had more bloods taken and another appointment in 4 weeks to discuss next steps. One really great thing he said was that my lifestyle is excellent - so the low sugar, no processed food, lots of water and low alcohol intake got the big thumbs up! If ever I needed encouragement to continue, I certainly got it today!

So my question to the group is - has anyone else been put on statins because of the positive impact if you have ET? What did you consultant tell you? Anything else I should be asking him?

Thank you - hope you're all enjoying this beautiful late summer sunshine!

Liz

[Superwoman]

Hi Liz, I have ET and like you also have high cholesterol, and an underactive Thyroid I have tried many Statins and have reacted very badly to them, my GP's still keep trying to try other ones on me, but enough was enough really did not like the way they made me feel, apart from severe joint pain and a constant upset stomach and MOOD swings that drove my hubby round the bend, so was recommended to read a book by Dr Malcolm McKendrick the Great Cholesterol Con and he puts everything into perspective. After reading I put most of his ideas to the test, and have now lowered my Cholesterol but also lost a bit of weight. My diet has always been good, do not drink too much other than the occasional glass or two of wine, plus loads of water, so if you can have a read, oh and eat plenty of oats and nuts.

I know how you feel I have a twin sister and hers also is high, and again doctors want to keep putting her on Statins, but they make her feel really ill.

It's bad enough having a rare blood cancer, without doctors trying to put us on yet another drug that can do more harm than good, OK I know that for some people they work but for me they did not, also have a friend who was on them and she suffered two heart attacks, and her count was lower than mine, she now refuses to take them, and she is doing OK.

So keep the good work up, and enjoy this beautiful Indian summer.

Jean

[lizzieET in reply to Superwoman]

Thank you so much Jean for your reply. My consultant is really open to different solutions so I'll share your post with him.

Liz

[lizzziep]

I have ET but my cholesterol has always been around 4, so don't know if that's connected to the ET or not.

[Borage]

I have ET and the Hydroxy, I have low thyroid levels too and take thyroxin.

Funny how many of us have both!

I am on 40 mg Statin to help with the elasticity of my blood vessels for angina, my cholesterol is normal.

[Tinkerbell13]

Found all you said so interesting, especially as my mother with PV had high cholesterol and I have ET and have also high cholesterol. Didn't get on with statins, though. Hope you get lots of helpful and positive feedback. Best wishes Tinkerbell13

[YogaLover]

Thanks for the interesting information. Lovely to hear you have an understanding doctor - makes so much difference when can discuss your situation.

I have ET and had high(ish) cholesterol for years. Did take statins many years ago but gave them up.

Had a consultation with my GP after ET diagnosis and he was very understanding and at my request did a cholesterol risk assessment for me. Turns out that even with ET I'm low risk due to very high levels of good cholesterol and healthy lifestyle. So no statins for me 😊

[lizzieET in reply to YogaLover]

Yes I did a Q Test is that what you're talking about? I came out a 3 so my GP says no statins. Will be interested took see what consultant says at next meeting. I really don't want to go on statins!

So much unknown about all this eh?

Liz

[Mardihel in reply to YogaLover]

Hi what was you cholesterol reading x

[cannonfire]

I also have ET. Have been on statins for several years. Statins deplete the Co Q 10 in the blood. I take a supplement for that. I've not had any change to my platelets with statins. I have no issues taking them.

[lizzieET in reply to cannonfire]

That's good to hear thank you.

Liz

[Green1988]

hi my husband had his bloods done yesterday and came back with high cholesterol at 6.2. He doesn’t smoke or drink got a healthy lifestyle walks daily. The nurse said this is not related to Et. We are so worried.