I haven't written a post in a while but have been reading all posts.
I wrote a few months ago saying my cholesterol was 19.4 and docs were adamant that I needed statins which I refused to take. My levo was increased to 200mcgs and I started to feel much better. I tried to tell my doc that once my levels were optimul my cholesterol would come down naturally she disagreed and said even if there was a link between hypothyroidism and high cholesterol it wou!d only come down by 2 at the most.
Last week I suffered a stemi heart attack and had to have a stent fitted to open up the blocked artery. During my stay in hospital I had numerous blood tests including cholesterol test which showed my cholesterol level had reduced to 9 so the theory was proved right that levo HAD reduced my levels. I had to see a member of cardiac rehab team who absolutely argued that hypothyroidism does not cause high cholesterol I got so annoyed I walked out of the room. Sometime later he returned to the ward and apologised to me, he had looked up what I said on the computer and it educated him on the fact that you are unable to break down the bad cholesterol when you are hypothyroid. The docs have said I must take statins in tablet from and injections as I still need to get levels down to avoid another attack. I am still reluctant to take them but am scared what will happen if I dont.
I am home now and resting up.
Thank you for listening.
Mazmilly
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Mazmilly
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I'd be inclined to meet them half way and see if you can keep the statin dose lowish. It would be wrong to deny thyroid hormone doesn't have an effect on cholesterol and the doctor had the decency to apologise and change their approach. Certainly your hypothyroidism has contributed to your condition but it's probably too late to reverse it, statins do save lives but shouldn't be used without finding the original problem. I'd be temped to back both horses and play safe. I've no cardiac expertise so these comments are more gut reaction than knowledge based.
Hi Mazmilly, when I was diagnosed hypothyroid 12 years ago my cholesterol was 14.85. I started on levo which was raised every 6 weeks and my count came down to 4.6. I hadn't changed my diet, just took levo. Hope that helps. Jo xx
The very FIRST thing they should do is test your Free T4 and Free T3 and T3 should be at an optimum level. It is T3 which is needed in our T3 receptor cells, levothyroxine being an inactive hormone which should convert to T3. If we don't do so efficiently we will be symptomatic.
They pass the exams shaws, because their training and therefore testing on autoimmune issues, and particularly the thyroid, is minimal. Hence they have to check on the internet to find out the basics. An absolute disgrace when the thyroid is so fundamentally important to so many bodily functions.
Patients like Mazmilly then fall through the massive gaps in their knowledge, and problems that could be easily solved with the correct and optimal thyroid meds and an appropriate low carb diet are escalated into more serious conditions. Strangely, they are only too happy to provide statins and other nefarious meds to 'solve' the problem.
I was a stones throw from this situation myself until I found this forum, after decades on Levo and suffering symptoms throughout. After readily accepting that all I had ever been told by GP's and various specialists was flawed, and with kind help from members here, I took control of my own health and recovered.
I refused the statins (I witnessed what it did to my parents) and the long list of drugs I had been prescribed, (that had all made me worse when tried) and concentrated on getting vitamins and minerals optimal, and improving my diet (although that was mostly ok) when vitamins were all where they should be (the B's were tricky for me) I bought my own T3, and increased it slowly until I felt consistently well.
I have never looked back. No need now for the heart specialist, constant, useless TSH and cholesterol checks, no sleep apnea, breathlessness or widespread pain. I have never felt over medicated, probably because I have ISTH ~ impaired sensitivity to thyroid hormone aka RTH ~ resistance to thyroid hormone. Of course some people just need a small amount of T3, as they don't have the same condition, but if someone is still symptomatic on optimal T4, I would think adding T3 or changing to NDT would help enormously...the evidence for this is all over this forum. It has to be worth a try, when all else fails, and the patient is between a rock and a hard place.
Despite the fact a majority of Drs don't seem to 'believe' in the importance of T3, (convenient, due to increased costs for struggling NHS) the ones I have seen are amazed and incredulous at my improvement, and 'specialists' have signed me off, although they continue to repeat faint (and getting fainter) warnings of a hormone they seem to have little knowledge of. I'm afraid until they catch up with the reality of thyroid disease, and the dire consequences of the misinformation we are often given, all we can do is read and learn and try to help ourselves, or continue to fall through the gaps.
Well, if the doctors/specialists are astonished at your increase to good health, why are they so stupid not to realise that what they have been taught is wrong - or to even suspect it is wrong. Mind you, other doctors who treated the patients and 'not the blood tests' were hounded by the Professional associations in order to bring them into the fold and not concentrating upon their patient's improvement.
They are not knowledgeable at all about clinical symptoms and should know the following by heart.
Perhaps the fear of being hounded like other knowledgeable Drs does play a part in their compliance to the TSH and T4 regimen...it seems they rarely even bother to test T4 now. But I think mainly they're just poorly (and wrongly) educated on the thyroid. I had a majority of the symptoms on that list, (I still have a few...tinnitus, dry eye, etc.) but I was diagnosed with ME, CFS, fibromyalgia, Sjogrens, and Raynauds and all the other symptoms were neatly attributed those disorders. Every time I was sent to a different specialist, I came back with another disorder ~ I felt like the unluckiest person alive! I also apparently had curvature of the spine, hyper mobility, MCS (multiple chemical sensitivity) eczema, asthma, COPD, depression, anxiety, panic attacks, the list goes on...and you can imagine the prescribing potentional of all these disorders!
When I told my GP of 20 years I was going to try T3 (and NDT if the T3 didn't work) she said 'but these things are just steroids, and they will do you no good ~ they're very dangerous, and what about your heart?' I tried to explain a number of aspects of it to her, but it fell on barren ground. She just advised me against the 'misinformation on the internet' ~ even when I told her it was an NHS choices site.
I nevertheless insisted, as I had lost so much of my life to 'ME' etc., and so she very reluctantly agreed to monitor me. The first sign of a slightly suppressed T4 and TSH (no T3 tested by NHS lab) and she almost went into fits and even got another Dr to ring me as she couldn't cope with it.
They were disbelieving at first when I said I felt so much better, and my GP said 'we'd all feel better on steroids, though wouldn't we?' And so it went on...I'd go down for all the usual checks, but tried to avoid them as much as possible, and gradually they all started to realise that things had improved...my oxygen levels (without the 3 inhalers) my heart rate, the mucin I was carrying around my middle, (despite being so thin everywhere else) and of course the fact that I could walk!
But when they ask and I say I'm on a high fat fairly low carb diet and I take T3, they shake their heads and give a wry smile. It's pointless trying to explain about having impaired sensitivity to thyroid hormone, or diet...they're just not interested, for whatever reason, even when you clearly no longer require all the prescriptions for things you never had. Perhaps that's the other part of the problem, there's no money to be made from healthy patients that don't need meds.
In all fairness, I should add that I did see a GP recently for the first time (he's unfortunately left now ~ I saw him 2 days before he moved too far away for me😕) and he was amazingly knowledgeable and seemed to understand the whole thing. He told me many people do better on T3, and apologised for not being able to test for it through the NHS! He looked through my notes and congratulated me on my progress. It gave me a smidgeon of hope, but I doubt he'll last long in our current flawed system...it needs to change.
Thank you. I only wish I'd found these things out sooner ~ I could've saved myself years of debilitating illness. I spent a long time researching ME studies in the early days, (before I gave up and lost hope) and I don't think many researchers at that time had made the thyroid connection.
I also spent the longest time looking into vaccine damage, as that was where all my problems began, as it had for other family members on my mothers side...all 7 had developed serious autoimmune diseases following vaccinations, and 2 had died as a result.
But what really slowed me down was my erroneous faith in the medical system, even though my gut feeling was telling me otherwise. I was repeatedly assured by all medics, despite my own thyroid having 'no output at all' that my thyroid levels were fine on Levo, (by testing TSH😕) and every time I mentioned anything thyroid related, or questioned the ineffective treatment I was receiving for my various 'conditions' I was made to feel like a problem patient, or 'depressed' or 'anxious'.
I was also told my vitamin levels were 'fine' despite them being rarely checked. I actually had a serious B12 and folate deficiency, and when finally tested, my vitamin D level was 4. Still, better late than never ~ this forum has been a life saver👍
I have had ME/CFS for 40 years - it started when I became an Air Stewardess in 1979 and had Yellow Fever, Cholera, Small pox ( last year of that) and polio immunisations. Hope I can turn things around!
That's awful...I'm so sorry ~ it's such a waste of life isn't it? I really wish you well in regaining your health ~ if I can do it, so can you, I'm sure. It's difficult to go against Drs advice/reasoning, but you really do have to double check everything with your own research, as they often lead you down the wrong path, wasting time and energy. We're all different of course, but there are many very knowledgeable members on here to offer advice, as you know, and if you think I can help in any way based on my own experiences, please know you can PM me at anytime to ask anything. Best of luck to you.
I could go on with the links, but I won't. One thing is clear, after all the reading I've done, I would not take statins whatever my level of cholesterol. Actually, my cholesterol is very low, and I'm in far more danger of a heart attack than you probably are.
So sorry to hear your news, it must have been a terrible shock.
Just in case you need further ammunition in the future about the known links between hypothyroidism, raised lipids and cardiovascular disease, here's some of the published information I've come across:
Seeing my cholesterol levels double over the space of 2 or 3 years was one of the factors that helped me decide to self treat with NDT after having other hypothyroid symptoms for several years. Once I started on NDT my total cholesterol "magically" halved, it went from 12 down to 6 in just 2 months. I'm perfectly happy with that level, which is still above what GPs would call the normal range. As greygoose said, low cholesterol is not a good thing, particularly for older people.
As others have said you need to watch your FT3 levels, with private testing yourself if the NHS won't do it, which most of the time they will not. A good T3 level is vital for good heart function.
A Renewed Focus on the Association Between Thyroid Hormones and Lipid Metabolism.
Thyroid dysfunction, manifesting as either overt or subclinical hypothyroidism, negatively affects lipid metabolism: this leads to hypercholesterolemia which progressively increases the risk for cardiovascular disease and, potentially, mortality. Hypercholesterolemia in hypothyroidism is mainly due to a reduction in low-density lipoprotein (LDL) receptor activity
Beyond lipids, SH can have a deleterious effect on several other CVD risk factors. SH has been associated with a hypercoagulable state [77, 83]. Furthermore, SH impairs ventricular function as well as cardiovascular and respiratory adaptation to effort and decreases heart rate variability [98, 99]. Moreover, SH decreases flow-mediated vasodilation and nitric oxide (NO) availability, which are markers of endothelial function [98, 99]. An increase in CIMT has also been described in SH patients compared with controls
Varied alterations in lipid parameters are noted in both overt and subclinical hypothyroidism, including elevated total cholesterol, low-density lipoprotein (LDL) cholesterol, and apolipoprotein B. A hypothyroid state results in decreased expression of hepatic LDL receptors and reduced activity of cholesterol-α-monooxygenase, which breaks down cholesterol, resulting in decreased LDL clearance.
Moving forward, I strongly recommend you watch Ivor Cummins' videos on YouTube. He also has a great Podcast series. He has spent several years studying the root causes of cardiovascular disease, and chronic dieases in general, after researching the reasons for his own health problems, and how to improve chronic disease with diet and lifestyle changes.
I've just read back through your previous posts, and see your triglycerides were very, very raised at 14.5mmol/l. Several members recommended you eat a low carb diet, which should fairly quickly lower your triglycerides, and reduce your raised HbA1c to avoid going into full blown diabetes. The most common cause of high triglycerides is eating a high carb diet.
Going low carb is going to be a massive help for your health in general. If you've not already seen it the website dietdoctor.com has tons of free information on low carb, including many free recipes.
What you've gone through is probably most members' worst nightmare. We're all right behind you and will do everything we can to support you. I know it's pretty mind boggling as there is so much to take in. On a positive note, at least you will have plenty of reading to do while you are resting up!
Please do let us know how you're doing, and if you need any more advice.
I’m in something of a similar position in that I’ve struggled for years with hypothyroid and T4 treatment but also during the same time period suffered with blood clots resulting in pulmonary embolisms. So treated with T4 and also anticoagulants 13 months ago I had a stent 99% blockage to main artery, no heart attack but emergency angioplasty for the stent.
My cholesterol was ‘massively high’ in a panicked situation I felt really intimidated and ashamed if I’m honest.... the registrar literally was with me for 5 mins. Anyway your story - not mine, but I understand where you are. I took the statins, I am cautious about them but one of things not touched on is the pressure that comes once you are in the cardiology world. My GP was lovely but they defer to specialists and we all know the battle with thyroid treatment - this tips you into another and no one I’ve spoken to has accepted (or knows) the link between the two.
Last point is what I have found to be a challenge at times with dietary advice - low carbs - high fat, advice contradicts between the different conditions.
All we can do is be as informed as possible - I pay for my thyroid tests privately - I’m over-tested on cholesterol but not once has thyroid been tested at same time.
I honestly don’t want to contradict the good advice that people have given but at a time when we are in something of a vulnerable position, it is very difficult to challenge professional opinion. In my experience they have neither the time or the interest. It would feel like one less battle if the impact of thyroid problems was more properly understood so well done on the victory with the doctor you saw.
It's quite long, but is well worth the effort in my opinion.
There is evidence that statins actually increase the risk of heart failure, type 2 diabetes, cataracts, rhabdomyolysis (destruction of muscle tissue), kidney failure, and dementia. Oh, and I forgot ALS - the condition that Stephen Hawking had.
Dr Kendrick (3 books and a blog) writes very entertainingly about the myth of ‘high’ cholesterol causing CVD. He maintains that those with ‘high’ cholesterol live longer and that lowering cholesterol is a big mistake. I know that I read a meta analysis recently which stated that taking statins could extend ones life by 4-10 days over 15 years, or something like that. Statistically it seems that we are suffering more from heart disease in the west but the intake of statins is on the rise; why would this be? Also, the number of people with diabetes is on the rise and statins can cause diabetes.
I recommend Dr Kendrick’s books and his blog; his blog deals with the causes of CVD. I have also read an interesting book about Vitamin K2.
I am not a medic and therefore make no recommendations; you must make your own decisions as to what you wish to do.
I understand why some people are against Statins, though personally I think, if you haven’t tried it and experienced potential side effects yourself, you should be open to a doctor’s advice of taking them. I am 49 and I have been on statins since a diabetes diagnosis when I was 42! My cholesterol and blood pressure was also elevated. At just 5’3” in height, I was overweight at just over 10 stone. With Diet and Exercise, my weight is down to 8 st 5 and my HbA1C, cholesterol and blood pressure readings are well within normal range. These are also helped by Metformin, a statin and a blood pressure med. 2 years ago I was diagnosed as sub-clinical hypothyroid, so you can add Levo to the mix. I haven’t felt better, with higher energy levels and more of a zest for life than before. I guess you can argue that with the diet and exercise, my numbers would have come down anyway, but the fact that I am still within normal range and not ‘low’ tells me that genetically I need the meds and I am glad that I listened to the medical professionals that supposedly know nothing.
Are you type 2 diabetes as high cholesterol is usually picked up on diagnosis. I have been diabetic for over 23 years but have never taken stations. I was able to lower my cholesterol by cutting down cheese and fats . There are two types of cholesterol and if both sorts are too high then there may be a family link. I have olive oil sunflower oil and no single or double cream except occasionally. My cholesterol is lower now being about 6.4 but I am still finding information about cooking oils such as vegetable oils used for frying. Many of these contain rape seed oil or canola which in 2018 was researched to find this oil can make cholesterol rise. Olive oil. helps to keep cholesterol levels. even. I did try statins but felt peculiar as did my husband so we don't use them.
Changing your diet to remove cakes and biscuits as well as fats other than olive oil and sunflower seed in your diet may reduce the cholesterol in the blood. Vitamin k and d are important helping to prevent fatty plaques in the arteries. I wouldn't argue with your medical team but I would change my diet for three weeks then have another cholesterol test to see if your cholesterol levels are lower. Stress can make your blood pressure go up so if you feel worried about taking statins may be you should see how you feel before taking them.
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stopping levo for a time before test and statins?
This is confusing
Nurse phone call update
