Has anyone tried Inclisiran in place of Statins - Thyroid UK

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Has anyone tried Inclisiran in place of Statins

Dizzy938 profile image
41 Replies

My doctor is keen to reduce my cholesterol as it is 7.3 and I can't/wont take statins. I also have problems with palpitations so can't even raise my levo. I am a bit worried I am developing a heart condition too.

I am just waiting for a blood test and xray before I go back to the doc who has suggested I could try this Inclisiran to reduce my cholesterol.

I looked it up and there don't seem to be any side effects but it is quite new.

Has anyone on the forum had any experience of it?

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Dizzy938 profile image
Dizzy938
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SlowDragon profile image
SlowDragonAdministrator

High cholesterol linked to your low Ft3

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

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.

Have you retested thyroid and vitamin levels since you were going to add daily vitamin B complex last test 7 months ago

healthunlocked.com/thyroidu....

7 months ago

Ft4 only 44.00% through range

Ft3 only 16.22% through range

Palpitations can be due to not being on high enough dose levothyroxine

How much levothyroxine are you currently taking

Dizzy938 profile image
Dizzy938 in reply toSlowDragon

On my last post 7 months ago I was on 100mc on alternate days and 75 on the other days but the palpitations just got worse so I had to cut back to 75 every day. I did start the Vit B complex but have not retested yet. The Inclisiran is not a Statin it is something new that is supposed to reduce cholesterol without the side effects but I had not heard of it as it is quite new. I am quite worried about my heart as I am starting to get pains in my chest (left side) but am not sure if it is heart or lungs until I get the result of the blood tests. I did try to explain to the doctor that low T3 can cause high cholesterol but she said "no no your TSH is fine it cant be that" then changed the subject. I do have family history of heart problems both Grandmothers and Mother was Hyperthyroid and died at 57 in 1981 of a heart attack but I dread to think what lack of treatment she must have been getting at the time. Scary.....

I am also on HRT so I don't suppose that helps either

SlowDragon profile image
SlowDragonAdministrator in reply toDizzy938

So it’s likely your thyroid levels are even lower now if you have reduced your dose levothyroxine further

Strongly recommend you get new FULL thyroid and vitamin testing done

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

HRT frequently requires that thyroid patients increase their dose of thyroid a little

pastimz profile image
pastimz in reply toDizzy938

I have had high cholesterol all my adult life. I am in the USA. My HDL is high as well, so that's good. My GP had been wanting to add statins for years and I resisted (my parents had high cholesterol. My Dad was almost 95 when he passed and my Mom was 89 when she passed from cancer). Those are pretty long lives and no heart issues except my Dad needed a pacemaker. My endo suggested i get a coronary calcium score test. It showed no calcification buildup for me. I have had it done twice now (it's done every 5 years). Have not heard a peep from my GP about statins since. My cholesterol size is also on the large, I like to call it "fluffy" side which is supposed to be better than the small size which can cause plaque. You might ask about a coronary calcium score if it's available there.

Framboise profile image
Framboise

My husband is now on Inclisiran, having had dreadful muscle pains on the usual statins, given following a stroke three years ago. He was almost unable to walk in the end and had cramps every night. His GP had to be told that our area will fund Inclisiran, some don't, but he eventually got the go-ahead after about two months. One of the nurses in our surgery gives it to him every six months and the only side effect he's had is irritating skin. It has successfully reduced his cholesterol, his muscles are almost back to normal, and he can walk fairly well again. He thinks it's wonderful!

Dizzy938 profile image
Dizzy938 in reply toFramboise

thank you its a relief to know someone has had good results from it.

Framboise profile image
Framboise in reply toDizzy938

The only problem seems to be in persuading a GP that they can fund it, and that it can be injected locally and not just at a London hospital. Good luck if you try it :)

Lulu2607 profile image
Lulu2607 in reply toDizzy938

My cholesterol is similar to yours and I could hardly walk on statins so will also be asking about this med. Please keep us posted.

SlowDragon profile image
SlowDragonAdministrator

Once you have results, come back here with new post on what next

Likely need to see thyroid specialist to manage dose increase in Levo and/or addition of T3 prescribed alongside levothyroxine

Get vitamin levels tested and optimal first

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

Dizzy938 profile image
Dizzy938 in reply toSlowDragon

Thank you S D I will get the thyroid bloodtests done as I am sure it will only be tsh from the doc I will report ba k as soon as I have them.

SlowDragon profile image
SlowDragonAdministrator in reply toDizzy938

Stop vitamin B complex 5-7 days before test

you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) instead that week

And test thyroid early morning, ideally before 9am , only drinking water between waking and test and last dose levothyroxine 24 hours before test

greygoose profile image
greygoose

Despite what doctors think, high cholesterol is not a problem. It won't give you heart attacks or strokes. Cholesterol is not the enemy, your body needs it. And high cholesterol is a symptom, not a disease that needs drugs to treat it.

anna-c profile image
anna-c in reply togreygoose

Totally agree. Looked into this myself as GP wants me on statins as cholesterol high. I am also just over threshold into being a diabetic and statins increase glucose levels so I have refused point blank. I will take my chance as dont like what I have read at all.Good to hear someone else has same opinion I have come to as well

greygoose profile image
greygoose in reply toanna-c

I think you'll find plenty of people on here that have the same opinion. We do our research even if doctors don't!

Dizzy938 profile image
Dizzy938 in reply togreygoose

I finally got my brain working and looked up my results online for the Cholesterol which reads as follows.

Serum cholesterol 8.3

Serum HDL 2.1

Serum LDL 5.7

Tryglycerides 1.1

Cholesterol/HDL ratio 4.0

greygoose profile image
greygoose in reply toDizzy938

Without ranges doesn't mean much. But, whatever the levels, it's going to be a problem with low FT3. Raise the FT3 and the cholesterol will drop. In the meantime, don't worry about it. :)

Dizzy938 profile image
Dizzy938 in reply togreygoose

Thanks that has cheered me up☺️

greygoose profile image
greygoose in reply toDizzy938

You're welcome. :)

Framboise profile image
Framboise in reply togreygoose

A major problem comes when someone is incapacitated in hospital and given "life-saving" drugs and is then too terrified not to take them when the crisis is over. Sitting ducks!

greygoose profile image
greygoose in reply toFramboise

Absolutely, yes! Last time I was in hospital they drip-fed me PPI's and beta-blockers, both of which make me ill, but I was too far gone to know what I was being given.

humanbean profile image
humanbean

I have some test results for Total Cholesterol from the early/mid 1990s. The reference range was given and the top of the range was 7.5.

My next test results for Total Cholesterol were from later in the same decade and the top of the reference range was 5.

I think that the reference range was lowered so drastically to make far more people eligible for statins.

I remember it was in the news when this change happened because it immediately made more than half of the adult population of the UK instantly have "high" cholesterol when few people had had it before the change. All they did to achieve that is reduce the top of the range by a third.

You might find this link of interest - and pay particular attention to the graphs :

drmalcolmkendrick.org/2012/...

If you want information about Inclisiran these links may be of interest :

Info from the USA : drugs.com/mtm/inclisiran.html

Info from the UK : bnf.nice.org.uk/drugs/incli...

...

Be aware I'm not a doctor and I have no medical training, so please do your own research.

My fear about long-term injections like Inclisiran is that if I don't react well to the drug I could have to live with the side effects for many months.

The other thing is that those being treated with the drug are also told to eat a low-fat diet. I think this is actually dangerous. The brain is made up of approx 60% fat. Why would I eat a low fat diet when the body and brain need fat to survive?

GHHR profile image
GHHR in reply tohumanbean

Completely agree with your comments about reference ranges for cholesterol as this is my experience. Doctors are obsessed with high cholesterol. I take Levothyroxine for hypothyroidism and during the pandemic had v high blood pressure and chest pains. On hospital admission I was given high level of statins and other medication. Tests showed my heart etc were fine. I think my symptoms were due to cumulative stress (father’s recent death/house move then lockdown) and statins caused severe muscle pain. I advised doctors I couldn’t tolerate and stopped statins. Was later diagnosed with inflammatory arthritis 3 years ago (link?)

Doctors should not push patients onto statins - especially those with thyroid issues and (particularly small) women! Dr Malhotra has written extensively on the subject of statins.

Marz profile image
Marz in reply tohumanbean

I do believe it has been the same with blood pressure levels. I think we also need to be aware of the 'push' to prescribe statins ? After his annual blood check hubby received a text saying he should attend for a statin prescription as he was at risk of a heart attack ! On obtaining copies of his results no such threat existed. I wonder how many others duly attended out of fear ?

greygoose profile image
greygoose in reply tohumanbean

Totally agree with you: low fat diets are dangerous:

psychologytoday.com/intl/ar...

humanbean profile image
humanbean in reply togreygoose

Thanks for that link, greygoose, it could be useful in the future to show to my husband who thinks low fat is good.

greygoose profile image
greygoose in reply tohumanbean

Oh dear. Sorry to hear that. Been brainwashed, has he?

humanbean profile image
humanbean in reply togreygoose

I think he learned everything he knows (or everything he thinks he knows) about health and nutrition before he was 25 and sees no reason to update his knowledge ever since. It's very frustrating!

greygoose profile image
greygoose in reply tohumanbean

Oh, I can imagine it would be!

Dizzy938 profile image
Dizzy938 in reply tohumanbean

They change the guidelines all the time to either save or make money. My optician was telling me about droopy skin on eyelids that they have changed that by à couple of millimeters so they don't have to do the operation. I also had the same worry about the injections that if it didn't agree with me I would be suffering for months. The low fat diet would not agree with me either as I am on high protein and low carbs. Thank you for your comments.

humanbean profile image
humanbean in reply toDizzy938

I've thought that reference ranges were often stretched or shrunk for economic reasons, rather than health reasons. It has added to my lack of trust in doctors.

Fruitandnutcase profile image
Fruitandnutcase in reply tohumanbean

Well done for finding and posting that humanbean - I was always positive that the reference ranges for cholesterol had been reduced over the years. At the rate it’s going down babies will have to be ‘statinised ’ at birth.

Trouble is a lot of our doctors probably hadn’t even been born back then so they don’t know any differently and go by what the big drug companies tell them.

humanbean profile image
humanbean in reply toFruitandnutcase

The idea that babies might be statinised is horrific, but the thought had occurred to me too.

Referring to low fat diets, if that piece of garbage is pushed hard again then very few people will ever go through life without being depressed.

My aim in recent years has been to improve my quality of life rather than the quantity. My mother was one of those people who thought doctors could do no wrong and just did what she was told. She died in her 80s but her health noticeably started to fail in her 40s, and this really ramped up in her 50s. I don't want to live to my 80s just to have the quality of life my mother had.

Efka profile image
Efka

I have no personal experience but funnily enough in the last week I’ve been looking at the “statin type” meds so I wanted to share this. For me the biggie was it is not a “liquified drug” it is a siRNA ie it will instruct your body what to do a bit like the mRNA covid injections but different.

“Inclisiran is known as an siRNA, also known as small interfering RNA (RNA interference). It works differently from the PCSK9 inhibitors by interrupting the “printing” of PCSK9 protein from the genetic template known as messenger RNA.

By stopping the PCSK9 protein being made in the liver, more LDL receptors can return to the surface of the liver and continue to remove LDL cholesterol from the blood. This interruption of PCSK9 printing lasts much longer than the other PCSK9 inhibitors and other cholesterol-lowering drugs, meaning inclisiran only needs to be given every three to six months.” - HeartUK.org.uk

GHHR profile image
GHHR in reply toEfka

I’d feel a bit uneasy about taking that tbh.. I’m on Ezetimibe and it does lower cholesterol somewhat (but isn’t a statin and no obvious side effects).

Efka profile image
Efka in reply toGHHR

Hi yes I felt the same, well for us it’s for my husband but he reacted badly to his one and only covid injection so that’s why we’re hesitant and of course once it’s in your system it’s in for a lengthy time before clearing.

So can I please ask you - you have no real side effects from Ezetimibi? I was worried it might upset the gut? Maybe we’ll ask to trial that before being pushed into one of the injections… thanks!

ainslie profile image
ainslie

I have similar cholesterol level , my cardiologist was not too concerned because the cholesterol ratio was good , ie good level of HDL, not enough is said about the ratio, docs tend to fixate on the total

Fruitandnutcase profile image
Fruitandnutcase in reply toainslie

Hang on to that cardiologist, he sounds a very sensible guy 😉

ICE187 profile image
ICE187

Prior to my hypothyroid diagnosis, my cholesterol was extremely high. I had daily palpitations for years. I was started on 75mcg of levo and my palpitations got worse. I cut my pills in half which stopped my palpitations. After 6-8 weeks, I went back on the 75mcg of levo without any palpitations. After months went by, I went on 100mcg of levo. My palpitations returned, but not as bad as before. I stuck with the 100mcg and my palpitations would only come once in a few months. I'm now on 125mcg and no palpitations. My cholesterol numbers have dropped over 100 points as well. Do you monitor your blood sugar levels?

Dizzy938 profile image
Dizzy938

I was diagnosed in 2016 and had gradual increases in thyroxine. I only started with the palpitations once it got to 100mcg which was great for my thyroid symptoms but that was when the palpitations started so the doc dropped them down again to 75mcg. After about 10 months I increased them by having an extra tablet 3 times a week but after 3 weeks they came back again. so I dropped back to 75mcg my blood pressure is always good and my Hba1c is 37 so not diabetic. I think I will wait to see what the blood tests the doc is doing re my Heart and if that comes back normal I might try the increase again as that way I wont worry about doing myself damage. Thanks for your input it is very helpful.

tj61 profile image
tj61

I also had raised cholesterol and GP wanted to put me on statins and like many others I won't take them. I tried the small yoghurt drinks containing plant stanols & my cholesterol is back to pretty normal levels

Dizzy938 profile image
Dizzy938 in reply totj61

I didn’t know if they made any difference but I will give it a go. thanks

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