Advice needed

I had an annual health check at my GPs at the beginning of the week - yet more blood tests!

My GP called today to say she is concerned about the results of one of the tests. That being my cholesterol level.

My cholesterol is currently 6.5 ~ I've no idea what my good cholesterol level is. I forgot to ask for the breakdown.

The outcome of this is that she wants me to consider taking statins.

I have a few risk factors as my Dad died at aged 48 of a heart attack and there have been other heart related deaths within the family.

I myself have had high blood pressure for a number of years - it goes up and down in relation to my HCT levels & venesections. So I am currently on the lowest dose of Ramipril.

I'm looking for advice as I am really not keen on taking statins. I've read lots of bad press about the side effects.

My way of thinking is as I have an illness [PRV] which puts a strain on my liver and kidneys, why would I want to add a drug into the equation which could possibly add further burden to these organs.

I'm not seeing my GP until the 12th October and she has suggested that I consider it and decide when I see her.

Does anyone else with an MPN take statins?

26 Replies

  • Hi there, im also PV and have high BP, im on full Ramipril & indapamide. Unfortunately my BP is pretty bad and cant be helped without meds. I dont smoke not overweight etc (could do more excercise 😐) its a complicated mix having both PV & BP isnt it? My cholesterol is low at the moment but I think I would be tempted to try to ramp up my fitness & diet before going down the statins route. Did you see 'The Dr who gave up drugs' on BBC? If not, check out episode 2 on i-player, very relevant & it made me think again thats for sure. Good luck with your appointment Kari. Jo

  • It is complicated mix Jo. My diet is fine as I've spent a lot of time today checking out cholesterol and diet and I can honestly say I was saying "I eat that already" "I don't eat that anyway" to almost everything listed. As with you my exercise routine could be a lot better... I work from home, so don't even have the walk to work anymore and I can't abide gyms (neither can I afford the membership) :)

    I think I'm going to have to try to get a half hour walk everyday into my routine.

    I haven't seen 'The Dr who gave up Drugs'.... sounds interesting! So I'm going to take a look now.

    Thank you :) Kari. x

  • Hi Kari - my understanding is that most cholesterol (80%?) is made by the body not derived from food, so while diet is important it's not always the answer. I've been on statins for 13 years with no problems - also take aspirin and interferon (Pegasys) for my ET. I think aim is to get cholesterol below about 4 but the balance between HDL and LDL matters too. Lots of information on the British Heart Foundation website...

    Good luck


  • Thanks Andy ~ yes, I think my Dr is thinking along the lines that it is familial, and she said she would like it to be around 4. I've just signed up on the BHF website for their booklets and e-newsletters.

    Thanks for your reply. Kari

  • Hi Kari, I have tried many different statins over the years and they crucified me, so do not take anymore, although they still try to put me on them, but I will not take anymore tablets, they have said that mine is familiar as my older sister and my twin sister both have high cholesterol, and both parents died of heart related issues, and my readings were 7.9 last year, but now through eating really well drinking lots of water and plentry of exercise daily, I have bought it down to 5.7, I also found when my TSH levels started rising my Thyroid tablets had to be increased which also helped as an underactive Thyroid goes hand in hand with diabetes, and high cholesterol .

    I found taking flax seed with Q 10 and chopped nuts in sprinkled over cereal like porridge or sultan bran, really helps. Also drink cherry juice which is good for blood pressure, plenty of fish is important and lots of fruit and veg, try to steer clear of too much red meat. I still enjoy a glass or two of wine, life would be boring if you had to give up all pleasures in life would it not.

    Try to catch up on I player for the episodes about the doctor that gave up drugs, it was really good.

    Don't despair you can do it, I did.

    Jean x

  • Thanks for the tips Jean. I'll pop into the health foods shop today to get some flax seeds with Q10. I can add that to my morning smoothie :) Kari.x

  • Kari, you can get packets of flax seed in most Supermarkets, the other thing is if you do go on a Statin you must not use flax seed as it will interact with them also it will make your readings go far to low basically just like using things like Benecol, and Proactive products. If you are still unsure try and read a book by Dr Ian Kendrick, called The great Cholesterol Con well worth a read.

    Anyway good luck

  • Hi Kari. I have ET take aspirin, Hydroxy, plus BP med. Was on statins to lower cholesterol for quite a while but did not like the leg pain. So my doctor changed me to Bezafibrate instead. I have had no problems taking that.

    Regards Sandy.

  • Thanks for your reply Sandy.

  • Do not be afraid of taking a stating your doctor feels it would help you. The incidence of people who get side effects is small but, of course, you only ever hear about those who get them rather than the majority who do not. If you are unlucky enough to get side effects then there are alternative medications. You really do need to keep your risk of having a cardiac event or a stroke to a minimum.

  • That's very true Osidge.... I've already had a small stroke due to PRV (3 years ago) so I definitely don't want another possibly bigger one.

  • Yes please dont worry , i have been on statin for 10 year and not a problem ,heart /stroke in my family . i think half the country take them . best wishes Holly

  • Thanks Holly. As Osidge said, I suppose we only hear of those who do have bad side effects. Kari

  • I've been on a statin for years as advised by the Haematology doctor after a Cholesterol test. I started on Simvastatin and had some leg muscle ache so the GP changed me to Atoravastatin and I have been fine with that. I know some people have more side effects but there are several choices of statins. I subsequently ended up on Warfarin for a couple of heart conditions as well as having MPN/MDS. It would be lovely to give up all medications (as on "Trust me, I'm a doctor") but the difference is that taking statins is a preventative measure. I think that a change in diet can only alter a Cholesterol level by up to 10%.

  • Thanks Eadaoin. I've also read that it's 10%. Which would make mine 5.85... not near enough to the magic 4. I have a lot of faith in my GP and my haematologist so know that I would be closely monitored.

    As you said, it would be lovely to give up all medications.... :)

  • Hi Kari,

    Can I ask which heam you see at the RD&E? I was with Dr Hamilton until he retired earlier this year. I had every faith and trust in him for the last 10 years. I have yet to meet my new heam, I've only seen a registrar for my last two appointments.



  • Hi Judy

    I see Dr Kerr. He's excellent! My clinic day is on a Monday ~ it's usually very busy and a few times of late I've also seen registrar's.


  • Thanks Kari,

    Mine was a Thursday until Dr Hamilton left. Then changed to a Monday, but now has been changed again to a Tuesday. I think my new one is David Veale so I'll see how it goes if I ever get to see him. Although they all seem quite good. Never know I may catch you there one day!


  • I've not heard of Dr Veale!! I agree though everyone who works in the Haematology Department at Yarty RD&E are exceptional... from the cafe & reception staff through to the Dr's, nurses and auxiliaries. You can not beat the treatment you receive. Everyone is so helpful and friendly.

    I always opt for an early'ish appointment ~ My next clinic appt is 9:45 on the 7th November.

    We may well see each other someday in the waiting room. Or we can arrange to meet for a cuppa at some other time. :)

  • Hi,

    While ago I was offered statins as I had bit higher cholesterol, by doc's and I refused it. Now my cholesterol is fine. As I understand statins are bad news for everyone. Lots of latest research is confirmed that. Check with your haematologist ...

    Wishing you well

  • I'm going to try my best and give it 3 months. I've just signed up to a local walking group and have bought lots of goodies to include with my diet... flax seed, Q10 etc.

    I'm due to see my haematologist at the beginning of November so I'll discuss it with him then and will speak to my Dr on the 12th October and tell her of my plans. If in the new year my cholesterol is still high, then I will admit defeat and take statins.

    Fingers and toes crossed.

  • Thats great Kari, it would be fantastic if you can improve your cholesterol this way, please keep us updated on your progress! Lets face it, either way you will undoubtedly be improving your health, even if you do end up with more drugs. All the best. Jo

  • My thoughts exactly Jo.

  • Hi

    You could try lowering your cholesterol by diet.

    My reading was 5.8 it's now 3.5.

    We have two friends who are retired GP's. We were talking about this only last week.

    Do you know how many drugs a GP takes unless absolutely life threatening?

    That's right.


    Food for thought perhaps.



  • An interesting fact Louise. Definite food for thought.

  • I take Simvaststin 20mg daily and I'm not aware of any side effects. I have ET and am jak2+. I also have an LAD coronary artery stent, and I'm on Warfarin 5mg and aspirin 81mg...along with a handful of other drugs.

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