Statins and Levothyroxine: I was diagnosed with... - Thyroid UK

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Statins and Levothyroxine

th2304 profile image
33 Replies

I was diagnosed with under active thyroid in 1983, based on TSH And T4 blood results, no other test to identify cause. I had been suffering what I now know were hypothyroid symptoms for almost 2 years, progressively getting worse before finally getting diagnosed (so bad I don’t think I would have lasted much longer). I think being male and possibly age of early thirties possibly contributed to under active thyroid not to be considered, I was told it was more common for women to have this condition. I was started on Levo and quickly improved symptom wise and over a few months felt normal again. In 1996 I suffered a hear attack completely out of the blue, no previous symptoms, no family history, no high blood pressure no high cholesterol, and have always wondered if 2 years of undiagnosed hypothyroidism may have played a role in what was diagnosed as coronary heart disease resulting in emergency heart bypass surgery. I recovered well from the bypass surgery and apart from being prescribed 75mg aspirin daily, I was not on any heart meds. Five years later I had some symptoms indicating all may not be well with heart and after hospital tests I was prescribed Statins. Simvastatin then a different one neither of which I could get on with as completely messed up sleep so was changed to 10mg Atorvastatin which I was told I could take in the morning, which I did find better. My cholesterol prior to statins was around 5.0, which I was told was not high but would be better lowered due to my medical history, also I was told by cardiologist that Atorvastatin taken over time would improve the condition of arteries ( true or not, I don’t know). Anyway over time the angina like symptoms I had experienced subsided and all seemed ok again, so then on Levo, 75mg aspirin and 10mg Atorvastatin daily. I can’t remember Levo dose at time it as been adjusted over the years from a high of 200mcg and now down to 125mcg. After a few years I started to suffered with muscular and tendon pain in shoulders and fingers resulting in steroid injections which gave temporary relief. Five years ago because heart condition had been stable GP told me to stop Atorvastatin as thought it may be responsible for muscle and tendon problems. Off statins there was an improvement and even an improvement in sleep quality but about a year later I started to experience heart symptoms again which resulted in me being put back on 10mg Atorvastatin daily which again daily quickly resolved the angina like symptoms that I had experienced. So my experience of statins is that they do have adverse side effects but also have benefits potentially life saving benefits. What I am now starting to wonder is what interaction there may be between Levo and Atorvastatin, because as well as the symptoms previously described for around the past 12 years I have suffered with feeling rubbish, extreme tiredness, lack of energy, fuzzy head and often difficult to get motivated to do things that I used to enjoy, and lately difficult to even function. When I restarted taking Atorvastatin around 4 years ago I started taking prior to bed time and seem to be ok sleep wise, then after reading some posts on this forum thought I would try Levo last thing at night (around midnight) and I must admit to surprisingly feeling a little better, not quite as tired or brain fogged, still not great so will be getting comprehensive bloods done with Medichecks as may be T4 to T3 conversion issues and may even be autoimmune problems. Anyway I thought I would share my experiences, and maybe others on this forum may have information on interactions between Levo and statins. The GP I previously had has since retired, and while he had a practical approach to prescribing, meaning he would consider ones feeling of wellbeing and not just blood results, he would not prescribe T3 or Armour and was unsuccessful when trying to get me endo appointment or T3 blood test, we only seem to be able to get TSH and T4 test in our NHS region Portsmouth NHS Trust. Anyway thanks to this forum I have found I can get them done by private labs but where my GP will take any notice them is another matter, but at least I will be better informed, and will post results here.

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SlowDragon profile image
SlowDragonAdministrator

Link here from NHS about statins and hypothyroid

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

th2304 profile image
th2304 in reply toSlowDragon

Thanks SlowDragon, I have read this before but despite having muscle problems over the years since being on Statins and asking about monitoring, I have been ignored. Ended up with rotator cuff tear in both shoulder, so bad surgeon had to split and use biceps muscle in both arms to repair them. I just think that NHS too often treat symptoms with the simplest and cheapest protocol, rather than find and treat the cause. Now knowing what I have learnt from this forum I do suspect a two year untreated under active thyroid likely played a role in subsequent coronary heart disease, because no family history and no high blood pressure or cholesterol, but I don’t know what my cholesterol level was for the two undiagnosed years, high I suspect. The crazy thing was that for those two years I was under hospital gastro department with horrendous problems and no one came up with the diagnosis or did the blood test. I went to my GP one day feeling so unwell that when I told him that I knew there was something fundamentally wrong and I was not going to last much longer, told him all the symptoms, he just said, ‘I think you may have a thyroid problem’, and then I got the simple blood test and diagnosis, although nothing was done to try to identify the underlying cause. Early diagnosis may have avoided coronary heart disease, the need to be on Statins and subsequent heart, shoulder and hand surgeries, who knows ?

SlowDragon profile image
SlowDragonAdministrator in reply toth2304

Are you on strictly gluten free diet? If not have you ever tried it?

It helps very very many with Hashimoto's.

Essential to test vitamin D, folate, ferritin and B12 too

th2304 profile image
th2304 in reply toSlowDragon

No not tried gluten free, I don’t t now have any GI problems, In fact only had very bad gastro problems before being diagnosed with under active thyroid, since being on Levo I have not had any problems. I have not been diagnosed with Hashimoto, there again I have only ever had TSH/T4 blood test done on NHS in our trust area, no testing to try to find out cause. I don’t know if Medichecks test that include autoimmune would indicate if Hashimoto or not ?

SlowDragon profile image
SlowDragonAdministrator in reply toth2304

Yes if you have high antibodies this is autoimmune thyroid disease, also known as Hashimoto's

humanbean profile image
humanbean

It is possible that you have conversion problems i.e. your body can't convert T4 (from your Levo) into T3, which is the active hormone that every cell in the body needs to function correctly.

If you have low T3, or T3 that is too low for you to feel (or be) healthy, it could damage your heart.

There is a condition called Low T3 Syndrome that many doctors have never heard of (or they think it is irrelevant when it is convenient for them to think so).

circ.ahajournals.org/conten...

You really need to find out your TSH, Free T4 and Free T3 (all from the same blood sample) to find out if your Free T3 is at a good level, and that the ratio of Free T4 and Free T3 is reasonable.

If you live in the UK you will find it difficult or (more likely) impossible to get prescribed T3. T3 is uniquely expensive in the UK so CCGs have banned it due to cost, but it costs far less in other countries. Some people buy their own thyroid meds, including T3, over the internet. Another thing that works for some people is NDT - Natural Dessicated Thyroid - which can also be bought online. It contains T4 and T3. But before even considering changing your medication you really need to know how much Free T3 you have.

Another problem you might have is low nutrient levels. It is incredibly common to have low vitamin B12, vitamin D, iron, ferritin and folate, because gut problems are part and parcel of hypothyroidism for almost all sufferers, so absorption is a problem. Chest pain is a side effect of some low nutrients.

th2304 profile image
th2304 in reply tohumanbean

Many thanks for advice, I will be getting comprehensive blood test including vitamins via Medichecks. I have been taking multi B, C, D3 +K2, zinc, magnesium and selenium for some time now except K2 which I have added recently following advice on this forum. Before I get bloods done think best to stop supplements for a while to get a more accurate baseline of results, not sure how long to leave supplements off for, was thinking a week should be enough ? If I did need T3 and could not get it on NHS how could I get it because I don’t think GP would give me a prescription unless it is in NHS/NICE treatment protocol, which it wouldn’t be if it’s considered too expensive and I presume I would not be able to get it anywhere without a prescription. I asked my previous GP about NDT Armour and he said it is not licensed in the UK so would not prescribe it, and would not prescribe T3 unless approved by endocrinologist and his request for endo to see me was rejected as ‘Inappropriate request’, basically endo will only see over active thyroid patients in our NHS trust. Whatever blood results say, I think it’s going to be a uphill battle to get anything except Levo in my NHS trust, but battle I will !

humanbean profile image
humanbean in reply toth2304

not sure how long to leave supplements off for, was thinking a week should be enough ?

Yes, a week is fine. However, if you have been supplementing vitamin B12 it is impossible to get a "true" reading of your "background" level of B12 unless you stop for many months. Obviously, few people on this site ever bother to do that! But if you haven't taken B12 supplements and your results come back low then you should get yourself tested for pernicious Anaemia before supplementing.

If I did need T3 and could not get it on NHS how could I get it because I don’t think GP would give me a prescription

There are sites on the web where T3 and NDT can be bought without prescription. NDT can be bought from Thailand. T3, as far as I know, can be bought without prescription from Mexico and Cyprus, but I could be out of date. Some people buy T3 from India, I've seen Bulgaria mentioned, and Hong Kong, but again, I could be out of date.

th2304 profile image
th2304 in reply tohumanbean

Thank you for this info, hopefully GP will take onboard blood results and prescribe what I need but good to know I can source elsewhere if need be.

SlowDragon profile image
SlowDragonAdministrator

It is possible to get T3 on NHS if you have clear low FT3 and/or gluten intolerance/coeliac, low vitamins and/or DIO2 gene variation

First step is to get full Thyroid and vitamin tests, usually privately via Medichecks or Blue Horizon

Important to include vitamins

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

DIO2 gene test

thyroiduk.org.uk/tuk/testin...

th2304 profile image
th2304 in reply toSlowDragon

Thank you for advice, I am currently taking Levo last thing at night so will not take it until after blood draw.

Marz profile image
Marz

Am not sure about the life-saving qualities of a Statin :-( They have the similar effect to VitD - in that they can be anti-inflammatory. This is what your Doc meant when he mentioned a Statin may improve the arteries. When you have inflammation in the arteries cholesterol is sent to the area to act as a sticking plaster and to help heal. Cholesterol does not cause heart attacks - stress and inflammation do - see link below. Also remember Docs are well rewarded for prescribing Statins ....

drmalcolmkendrick.org

Whilst researching plaque in the arteries back in the 1960's - they found Homocysteine - which is often high in Hypo people but RARELY tested in the NHS. This is because it can be lowered by taking B12 and the other B vitamins - so no money for Big Pharma. High Homocysteine can indicate LOW B12 in the cells.

Do you know your VitD level ? Needs to be around 100 ++ if you are in the UK. Should be tested by your GP but if not then it can be obtained from City Assays in Birmingham - website of the same name. 28 GBP's

Also you must have B12 - Folate - Ferritin tested and all need to be optimal for your thyroid hormones to work in the body and for a healthy heart function. There is research out there that shows how people with a good T3 level will recover from heart surgery far better than someone with low T3. There is also a book - Thyroid and Heart Failure - on Amazon. A collection of research papers from around the world where Cardiologists and Endocrinologists came together for the first time for the purposes of research. You can Look Inside the book on-line and read the Contents - T3 or Liothyronine is the STAR of the show !

amazon.co.uk/Thyroid-Heart-...

Since our food has radically changed we are very LOW in VitK2 - when animals grazed the land they took K1 on board and this then turned into K2 in their bodies which in turn gave us good levels - or did we turn it into K2 - ooops cannot remember !! VitK2 directs calcium away from the arteries and soft tissues and into the bones and teeth. If Calcium remains in the arteries then atherosclerosis can take place. The decline in eating products from grass fed animals fits well with the increase in heart disease since the war. Sometimes it is the easiest of solutions that are often overlooked. See link below for the Research Paper.

ncbi.nlm.nih.gov/pubmed/256...

Statins ALSO block VitK2 in the body - you couldn't make it up - so yes Statins can cause Heart disease due to this very fact - as one of many things that are wrong about Statins. REsearch shows that people dying in hospital had low cholesterol ....

When you do your Medichecks Test do not forget to add in the Vitamins and Minerals detailed above to the TSH - FT4 - FT3 and Anti-bodies TPO & Tg.

Hope you find this helpful.

th2304 profile image
th2304 in reply toMarz

Thank you Marz, very informative reading. All I know re statins is that after around 5 years after bypass surgery I started getting what seemed like angina symptoms, put on 10 mg Atorvastatin and symptoms cleared up, a few years later because of muscle/ tendon problems (thought to be due to taking statin), statin stopped and a year later started getting angina like symptoms and heart palpitations. Back on 10 mg Atorvastatin and symptoms cleared up. When I had these symptoms off statins I was never actually diagnosed with angina and on the second occasion I had angiogram that showed despite the minor bypass graft which looked like it had failed (likely never worked), the two major grafts were working perfectly and cardiologists gave me thumbs up, however because of my cardiac history I was strongly advised to go back on 10mg Atorvastatin daily. As far as I know 10mg of Atorvastatin is the lowest dose, and this lowers my Cholesterol from around 5 to around 3.7 (last test). Of course it may be that I have other biochemical deficiencies/problems that are unknown and if corrected I wouldn’t have symptoms off statins, never likely to know ! What is clear is the very fine chemical balance of the human body and if this balance is upset, mayhem !!. Just to say I was definitely not trying to do a sell on the benefits of statins, I am fully aware they can have adverse side effects, probably some unreported, I was only relating my experience, and I would certainly prefer not to take them.

Marz profile image
Marz in reply toth2304

Oh yes I understand you were not promoting - I have read all your replies ! Did you click onto the links ? I know difficult to read on a phone !

th2304 profile image
th2304 in reply toMarz

Yes thank you Marz, have gradually been going through the links on iPad.

greygoose profile image
greygoose in reply toth2304

I don't think anybody has mentioned this so far, so I would like to add that you need cholesterol to make sex hormones. Taking a statin will leave you with low testosterone, which will not only affect your love-life, but put you in danger of developing prostate cancer. Testosterone protects from prostate cancer.

This happened to a friend of mine. His cholesterol was not high, but his money-grabbing doctor put him on statins 'just in case'! Nothing I could say would deter my friend from taking them. He thought doctor knew best! Until he developed diabetes - well-known effect of statins. He stopped them, but his wonderful doctor - who only had his welfare at heart, of course! - browbeat him into taking them again. And then came the cancer. He could have died. Luckily he didn't, and has vowed never to take statins again.

Your cholesterol is now too low. Low cholesterol puts you in more danger of a heart attack than high cholesterol - because high cholesterol does not cause heart attacks! The cholesterol won't kill you, but the statins just might.

th2304 profile image
th2304 in reply togreygoose

I do from time to time leave off the statins without telling GP, thank for your response.

th2304 profile image
th2304 in reply toMarz

Yes will be going for Medicheck comprehensive test with vit and antibodies, currently they have it on offer for £79 instead of £99

Marz profile image
Marz in reply toth2304

youtube.com/watch?v=O0lEmXJ...

You may wish to watch the above video - only half an hour long and may help you to think differently :-)

SeasideSusie profile image
SeasideSusieRemembering in reply toMarz

Very interesting Marz, thanks for posting. I already take a good dose of Vit C, will be increasing it now though as it is very timely.

A recent MRI of my brain showed I have some small vessel ischaemia which apparently in many cases is a consequence of atherosclerosis (as mentioned in this video), and my GP mentioned 'hardening of the arteries' showed up. Quite a common age related condition apparently.

What a wonderful resource this forum is, your contributions are always informative and very valuable :)

Marz profile image
Marz in reply toSeasideSusie

Funny you should pop up - I was going to ask you about the best VitC - I believe Cytoplan rate highly ....

Your brain always appears on fire - so hopefully everything is still in working order :-)

SeasideSusie profile image
SeasideSusieRemembering in reply toMarz

I do rate Cytoplan and use a few of their supplements. However, for Vit C I use a powder form and make a small drink with orange juice - I get capsule overload so try and find alternatives if I can. And of course, with the powder form there are no fillers.

I've used Vitabiotics Ascorbic Acid for some time, but have just had some Acerola Cherry whole food powder delivered to try.

I can't remember where I read it now but I saw something that said the actual Vit C content of ascorbic acid, percentage-wise, is quite small, ie 1000mg ascorbic acid doesn't give you 1000mg Vit C. I think it's less than 20%. The acerola cherry powder is labelled as having 26% Vit C and that 4 grams is equal to 1040mg Vit C.

I currently take about 4 grams of the ascorbic acid powder, so I will gradually build it up and see how things go. I have read that you can safely take up to bowel tolerance.

Marz profile image
Marz in reply toSeasideSusie

Thank you - will finish the ones I have from Higher Nature and then look around :-)

th2304 profile image
th2304 in reply toMarz

Thank you Marz, very informative.

Just read this interesting post and just joining in the discussion.

I have Hashis and treating with NDT (Erfa) since Oct 16, prior to that Levo for about 6 years and never felt well. Evidently don't really convert T4 very well. Been a bit up and down since being on NDT but I think that's mostly adrenal issues which I'm treating with supplements. However last October I experienced some chest symptoms at work one day (it was a very stressful day and I've since left the job) and on arriving home had another symptom which gave cause for a little bit of alarm.

So when my husband got home from work, after a brief chat he said we should go to A&E. This was Monday evening, didn't come home until Wednesday evening. Horrible traumatic experience.

If you present with any kind of heart issue in A&E they obviously do an ECG, but usually then a blood test to check for an enzyme called Troponin which is released in the blood stream 6 to 12 hours after a cardiac related incident. The blood tests they did over 24 hours showed my Troponin rising as far as 200 which isn't astronomical but evidence of something cardiac going on. 2nd day doctors said they would do an angiogram and an echocardiogram. I was in horrible shock. BP rising due to the state I was in. Also I've been loosely following a relatively low carb / higher fat diet for a while so was worried that I'd somehow clogged up my arteries in that time. I now know that's not possible, but have lost 2.5 stone in weight since doing it.

So I had the angiogram and thankfully they told me 'arteries clear' so no ambulance on stand by to take me for by pass surgery. During the time I was in there they gave me a massive dose of clopidogrel, a very aggressive blood thinner, along with aspirin and later a blood thinning injection in my abdomen called Fundaparinox. Another injection before the angiogram and more clopidogrel. Discharged with meds to take, aspirin, clopidogrel (so 2 blood thinners) and Atorvastatin. My cholesterol level at last test in early 2017 was 4.9.

The reason for the statin was because they think it's possible I could have had a 'plaque rupture' which is where the arterial plaque is covered with a kind of skin, but the skin sometimes breaks and a message is sent to send cholesterol and blood to fix the leak which often forms a clot, which is what causes the symptoms. The statin is given to help 'stabilise' arterial plaque though i found NICE guidelines recommend 10mg and they gave me 80mg!

So later when I saw the cardiac nurse (for cardiac rehab which I didn't continue with) she said I would have to be very unlucky to have a plaque rupture given I had such a low level of plaque but I would have to take the statin for life. Later, cardiologist said they couldn't determine what had happened, so it's termed a 'cardiac event', so I asked if you don't know and it wasn't a heart attack, why am I taking all these meds. He agreed to allow me to stop the clopidogrel after 3 months. That I was thankful for as I was mostly covered in black and green bruises from the effects of that tablet. They also reduced the statin to 40mg.

I have a cholesterol test coming up this Thursday so I will be interested to see what's going on with that now. If it's extremely low, I hope to reduce the statin further, but no doubt they will talk about stabilising plaque.

Sorry for the long post but just thought I'd explain there are supposedly other purposes for statins.

Marz profile image
Marz in reply to

Did you watch the video I posted above ? You may find it intetesting - and like me - learn something new 😊

greygoose profile image
greygoose in reply to

Seems to me that 'stabilising the plaque' is a bit like shutting the stable door when the horse has bolted! Why aren't they more interested in preventing the need for plaque in the first place?

It also sounds counterproductive, because if you have plaque it's for a reason. It's to cover up damage already been done to the artery. Without the plaque, things would be even worse.

I had a vaguely similar experience to yours. When the hospital couldn't find any reason for my symptoms - although I did tell them! - they blame my heart and went into full cardiac mode. However, my cholesterol was right at the bottom of the range - so low that the lab had noted that I was, in fact, in danger of a heart attack due to low cholesterol! So, that rather stumped them, and they just pooh-poohed the idea that cholesterol could ever be too low! Still, at least they couldn't prescribe me statins. lol

Marz profile image
Marz in reply togreygoose

I was thinking similarly - why block the very ingredient that heals the damage .... 😊

greygoose profile image
greygoose in reply toMarz

Exactly!

in reply togreygoose

I think what they are referring to is the low level of arterial plaque that everyone gets, as arterial plaque isn't just made of cholesterol, so everyone will have some level of plaque.

greygoose profile image
greygoose in reply to

Yes, but statins will only reduce the cholesterol. And you really don't want to reduce that.

in reply togreygoose

I understand what you're saying GG but at the moment I'm just going with the flow even though the flow isn't appealing for the moment. :-)

th2304 profile image
th2304 in reply to

Cardiologist never explained in detail, just said over time they improved condition of arteries,.

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