Declining statins

[HandS]

I’ve had a lung screening scan - was called as had radiotherapy for breast cancer in past.

Lungs are clear but received a rather dramatically worded letter stating there is “some calcification of blood vessels in the coronary artery”.

“Some” meaning what??? I am 70 and in looking online “everyone over 40 has some calcification of blood vessels in the coronary artery.”

I have had the inevitable call from my GP practice about prescribing statins. I agreed to do a fasting Lipid profile test - which has come back with normal triglycerides, a good HDL/LDL ratio but slightly high overall cholesterol number of 5.8 and I can see they are calling me on Monday wrt statin.

I have been hypothyroid for 23 years plus and a private endo I saw a long time ago told me never to take statins as they are - ‘a sledge hammer to crack a nut’. I have been on T3/T4 for 3 years prescribed by and NHS Endo and feel very well.

I don’t smoke or drink, am not overweight and I exercise every day. I think my lipid profile is good for me and I do not want to start statins at 70 with the risks they present.

My question is - have others made this choice?

Am I being unreasonable.?

I should say that I have a deep distrust of medical prescribing . After breast cancer surgery I spent many anxious hours researching prescribed drugs and in the end sat with my oncologist to explain the numbers did not add up for me. He agreed but still wanted me to ‘try’. In the end I declined. But it’s a very lonely place to be.

I have done the same with statin statistics - and I am not sold.

I know it’s up to me in the end, but have any of you had a good experience of taking them?

Best wishes

[humanbean]

I refused to take statins and my total cholesterol was much, much higher than yours. (It's been over 8 on occasion).

Ask your doctor about your Coronary Calcification Score (CCC). It gives a measure of how much calcium you have lining your arteries. The score can be in the hundreds or thousands [Edit : Or as low as zero]. I had mine measured once, and it was 8. So when I was asked if I would take statins I said no. And I will always say no.

If you read this link from the NHS :

nhs.uk/conditions/statins/c...

Note it says this about patients with an underactive thyroid and the problems with statins :

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Statins are known to cause damage to the muscles, to increase the risk of heart failure, type 2 diabetes (or make it worse if the patient already has it), to increase the risk of cataracts and dementia.

Personally, despite my high cholesterol, I'll continue to refuse statins.

[HandS in reply to humanbean]

Thank you v much. Did you have to pay privately for the CC score? I have looked into it briefly and doesn’t seem to routinely available on NHS.

Yes, I have been reading about the risk and apparently they are higher when starting statins after 70.

Many thanks

[humanbean in reply to HandS]

No, I didn't have to pay for the CC Score, the NHS tested me but I didn't ask them to do it.

I'd been having a lot of problems with my iron and ferritin and my levels were so low I was getting severe chest pain and tachycardia. (This was over 10 years ago.) This led to me calling an ambulance about 3 or 4 times, and each time I was told I wasn't having a heart attack. This eventually led to me getting an appointment with cardiology, and they couldn't identify why I was having the pain and tachycardia (which I'm shocked about - iron being very low is common), and they should have worked out the cause.

In the end the problem causing my low iron and ferritin levels was fixed but I had to fix the low iron and ferritin myself. I no longer get chest pain, severe or otherwise. I do still get mild tachycardia occasionally but it is no longer accompanied by chest pain, which is a relief.

[destiny234 in reply to humanbean]

Humanbean may I ask how you fixed the low iron and ferritin? I have same problem no matter how many iron pills I take

[humanbean in reply to destiny234]

may I ask how you fixed the low iron and ferritin?

I should point out that my iron/ferritin were very low back in 2013, it isn't recent, and although I improved my iron with supplementation it took a very, very long time. I wouldn't treat myself the same way now - at least not until I'd tried other things first.

Note that iron salts can be bought in pharmacies in the UK without a prescription.

I took one of the iron salts, ferrous fumarate 210mg (FF210) at what used to be the maximum dose which was one tablet, three times a day. I could only tolerate it with food or immediately after food.

I took that dose for nearly two years, and it raised my ferritin to mid-range (which was always my target). However my serum iron was still very, very low.

I started taking a maintenance dose of FF210 - I wanted to keep my ferritin at mid-range. My maintenance dose varied over time from as low as 2 tablets per week up to 5 tablets per week, in each case taking no more than 1 tablet per day. I tested and adjusted dose quite frequently - about 3 or 4 times a year.

I took a maintenance dose for five years. Then my serum iron finally started to rise. I kept taking the maintenance dose for a little while longer then gave up iron altogether.

I still monitor my iron and ferritin with an iron panel a couple of times a year.

.

Since I did the above various things have changed.

Current doses of iron pills prescribed by the NHS have dropped dramatically for reasons discussed in this thread :

healthunlocked.com/thyroidu...

See these links for the current doses prescribed by the NHS - but avoid ferrous sulfate - almost nobody tolerates it :

bnf.nice.org.uk/drugs/ferro...

bnf.nice.org.uk/drugs/ferro...

bnf.nice.org.uk/drugs/ferro...

Many people struggle to raise their iron with iron salts and the most recent popular supplements are haem/heme supplements by Three Arrows. They have to be imported to the UK from the USA but they are far better tolerated than iron salts and also raise ferritin levels more quickly than the iron salts for most people, but not everyone. Some people take both the Three Arrows and iron salts, and some still just take the iron salts. With iron, the best supplements are whatever works for you.

healthunlocked.com/thyroidu...

threearrowsnutra.com/en-uk/...

.

Some people who can afford it have paid privately to have iron infusions. I wish now that I had saved up to have this done, to cut down on the time that it took me to fix things. But I know that some people need to go through the iron infusions more than once, and I could never have afforded that. There are a few iron clinics around the UK, you just have to search for them online.

.

I have a personal (I'm not a doctor hence not official) theory about why I took so long to raise my iron and ferritin. Imagine that iron is needed in the body for 100 different housekeeping reasons, but levels are always low. So the unfinished housekeeping builds up and never gets thoroughly done, so the backlog is huge.

When I started monitoring my iron and ferritin and dosing accordingly the backlog started to shrink. But it was so huge that it took me seven years to get through it. I think I was low in iron all my life and I'm now in my 60s, but I have finally caught up.

[destiny234 in reply to humanbean]

Thank you humanbean for all that valuable information and for taking the time to put it all down x

[humanbean in reply to HandS]

received a rather dramatically worded letter stating there is “some calcification of blood vessels in the coronary artery”.

I actually assumed that since you had been told about the calcification of your blood vessels that they might have calculated your CC Score but just not told you the result. So I thought it would be worth asking.

[HandS in reply to humanbean]

Well, it was just a lung screening scan but they said that if anything else was spotted I’d be advised. It makes we wish I hadn’t agreed to the screening - the quantifying as “some” is no use to anyone. I have no symptoms. They might as well have told me I have ‘some’ grey hair….ie, your body shows normal signs of aging…😊

I wouldn’t get further investigations from. NHS while asymptomatic.

[Sleepman]

Good to hear you are will on combo treatment. I am well too.

If you read through greygoose replies you will learn a lot about not taking statins.

Cholesterol is a building block for making adrenal hormones. Mine was high till I got on T3 and T4. I heard researcher Dr Taylor from Cardiff saying c'l is almost a marker for good treatment of thyroid.

My Mum who is 77 ignores called slightly high ... she is hashi too.

[mrskiki]

My total figure is slightly over but my ratio is good. I was only offered statins once and started to try to discuss how I thought my ratio was good and I had read that statins reduce LDL, but it was my HDL that was high so what benefit would I get? She was completely unaware of advice on statins when having a thyroid condition. She made an excuse to end that part of the conversation and suggested I perhaps use spreads rather than butter etc. and went away. So I haven’t had to deal with it since, and my total has actually gone down slightly on last test.

[HandS in reply to mrskiki]

Oh I despair of some of the conversations we have! I just cannot imagine why anyone just swallows anything that’s on ‘prescription’’

Thank you

[mrskiki in reply to HandS]

I think I did much more so when younger and learned from a few mistakes there. Now there is so much more information available thank goodness.

My total cholesterol was up to 6.4 when I was first diagnosed with hypothyroidism, it’s down to 5.5 a couple of years on.

[HandS in reply to mrskiki]

Yes, I’m of a generation who accepted being dictated to by doctors who largely liked to keep their patients ignorant - and it still exists today, sadly.

[Sparklingsunshine]

GP's get points from the NHS prescribing statins, as well as other nice little earners like diabetes, depression, BP drugs, even asthma. And as they are all private businesses these days those points get converted into cash for the practice.

Vaccination rates, screening programmes, health checks, GP surgeries have targets they have to meet or they lose money. The way the system works unfortunately seems to me to be open to potential abuse and corruption. It seems some GP's will adopt heavy handed scare tactics.

Its upto you of course but I wouldn't take statins. And I've emailed my surgery so they dont offer them in the future. The potential benefits seem to me to be outweighed by the very numerous disadvantages. And you could always cancel the phone call. You arent obliged to be pressured into doing something you dont want to do.

[HandS in reply to Sparklingsunshine]

Thank you very much for the moral support! Yes, I agree with you

[arTistapple]

”It’s a very lonely place to be.” I agree this steamrolling/threatening/gaslighting of statins is terrible. If we don’t take them something terrible will happen. I am in my seventies and apparently if I want to live to 98 I must take them. I defy anybody to be in their 70s and no evidence of plaque. I certainly don’t want to live to 98 feeling so infirm as I am presently. Like you say the statistics just don’t match. I have taken them previously and developed arthralgia and myalgia. However it could have been my hypothyroidism taking a hold or at least making it worse.

You are not alone in your discomfort with this one. Many people on the Forum experience this dilemma.

Dr Asseem Malhotra (cardiologist) and Dr Malcolm Kendrick have some very interesting views on statins.

[HandS in reply to arTistapple]

Thank you very much for your supportive reply 🙂. I agree with what you say. I wish doctors realised that we do know what suits our own bodies.

Thanks again

[Sparklingsunshine in reply to HandS]

I'm anti taking meds for the sake of it. I take thyroid and HRT because my body can no longer make the hormones, or not enough for good health. And I use an asthma inhaler because I can die pretty quickly if I dont. But I'm not interested in taking statins for the theoretical benefits ( which remain controversial), whilst also opening me up to the potential side effects of dementia and diabetes.

I've opted out of cancer screening as well. Its my choice, one I researched extensively and carefully. Its certainly nowhere as clear cut as the NHS would have you believe.

There are a lot of potential harms to screening, as well as potential benefits and we deserve to have even handed, medically reputable literature that tells us both sides so we can make an informed choice. I'm not trying to influence anyone else, as I said its a purely personal decision.

But I have been contacted by my surgery when I opted out of mammograms, asking if I'd like to " discuss" it lol. You can imagine what I thought of that.

[arTistapple in reply to Sparklingsunshine]

When they don’t even listen to what we do tell them about our bodies, its hardly surprising we run out of road on the stuff they want done with them!

It’s all so hit and miss. They don’t seem to have any real clue about what they are doing most especially where hypothyroidism is concerned.

[annnsandell]

As you say at 70 (I am now 72) you would expect some calcification, you need to check how much, did they measure it, if not perhaps start there.

Yes, I take statins initially recommended by a heart specialist after a heart scan, my cholesterol was 8. I am also medicated for high blood pressure and dysrhythmia. They recommended 40mg but I found that made me put on weight so I take 30mg.

I know most of the arguments for and against, you have to make your own mind up, certainly not following GPs advice alone because they are pushing statins and aim to halve the level. I am also aware that it is probably low conversion that causes higher levels and that many people refuse to take them. I haven't noticed any other side effects but I am taking quite a lot of other medication anyway.

You could try extra vitamin B Niacin which studies have shown improve cholesterol levels and lower cardiovascular risks.

[HandS in reply to annnsandell]

Thank you for replying and sharing yout experience. I was given no indication of severity - it was aside to a lung screening.

I have no adverse symptoms or Co morbidities that indicate the need for statins and feel and perceived benefit doesn’t add up against the risk of starting them now.

I am really happy with my thyroid meds and Endo. Arthritis is my nemesis and I don’t want to take anything that would add to daily discomfort and make it harder to remain as active as I am.

Thank you and best wishes

[annnsandell in reply to HandS]

It sounds like you have made your mind up and it is good that we may have helped you. Take care.

[Hectorsmum2]

Have I got this right. Doesnt the vitamin K2 keep calcium out of our blood vessels. I usually take it with D3

[HandS in reply to Hectorsmum2]

I have no idea about that, sorry

[humanbean in reply to Hectorsmum2]

K2 helps to move calcium from the diet into the bones and teeth rather than lining the arteries.. Magnesium is also required for this. And also boron is involved in the process too.

I'm sure there are other nutrients involved but I can't think what they are.