I recounted my tale of the phone conversation with the gp in another thread, I'll copy it into a reply here
But basically I'm being referred to a lipid clinic but I have to have 2 fasting blood tests each 2 weeks apart
My normal check for my thyroid blood test is on 3rd March, so I suggested having one on that date, but that won't be soon enough to make the referral apparently
So I've made 2 separate blood tests for the 6th & 20th Feb which are the earliest I can get them
So I'm assuming the wait list for the lipids clinic is a matter of weeks unlike every other clinic in the NHS!🤣
But more importantly how fast might my cholesterol come down, if I actually get my medication right after a private consultation with a good specialist?
& is a test for magnesium called anything else on the records? If not it's never been tested 😞
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KatyMac68
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Repost from yesterday, ignore if you already read it!!😜🙄😱
I had a similar appt yesterday over the phone,
GP says your cholesterol is high have meds
Me: I'd rather not as I think it's to do with my uncontrolled thyroid plus very little testing of statins have been done on women and what there is says its not necessarily an advantage
GP:Well your wrong
Me: NHS website and the BMJ says what I just told you
GP: well they are wrong
Me: I'd like a cardiac calcium scan
GP: Well how are you going to get one of those?
Me: well I'll ask you and if you say no I'll ask the hospital when you refer me and if they say no I'll pay for my own (are they expensive?)
GP: well I can't send you for one
Me: OK
GP: how many of your relatives died under 60 of heart disease
Me: none
Gp: are you sure
Me: fairly maternal grand dad, cancer at 46, maternal grandma catastrophic organ failure post drug allergic reaction (!) Paternal grandad heart failure and TIAs...
GP: there you go.....
Me: at 91...paternal grandma, old age, dementia, post fall at 93(ish) father lung cancer 71, mother did die of congestive heart failure, I'll give you that but she was an alcoholic that smoked 60 a day & she died at 75, during covid and would probably not have done in normal circumstances
(Forgot to say)Now my brother had rheumatoid arthritis, oestocarcinoma, diabetes which came and went and most recently breast cancer....(bugger)
So we left it that she had warned me
My mum actually had her femoral artery bypassed but it turned out it had been crushed during a surgery (laparotomy?) for atypical appendix 25 years before & they apologised to her for saying g her artery was furred up from smoking, when it was actually crushed
There are two magnesium tests. The serum test which is almost entirely pointless as it varies so much, so fast, depending on magnesium intake. And red-blood cell magnesium which is claimed to represent what is inside cells. I'm not convinced that red blood cell magnesium content reflects what is available/present in the rest of your body, but that could be my ignorance.
I'm a little confused so apologies, but why are you being referred to a lipid clinic if you've politely told GP you wont take statins? They cant refer you without discussing it with you first surely? And more importantly why go ?
I'd like to go in case I can get cardiac calcium scan or test (which I now understand are 2 different things) and we can discuss the actual risks rather than the numbers of the general population mean you are at risk
Also they would be prepared (oh dear god I hope they will) alternative to statins and/or which ones would be better for my personal situation (with thyroid, ME, FM & allergies)
I think I may have lost the plot on this post. So many issues. However very interesting you will be attending a ‘lipid clinic’ - never heard of such a thing. Is this a place of persuasion to make you take statins? What else could it be?
If you get that far and that’s what it is about I have a question I would love them to answer. Although helvella could maybe answer this. What does high cholesterol have to do with calcium being set down in the walls of arteries? Calcium apparently is what causes the ‘blockages’ in the arteries, although it actually takes place within the walls of the arteries, not in the ‘tunnel’ of the arteries - as far as I can make out. I can find nothing in the content of cholesterol which could do this. So indeed what is the benefit (in medics terms) of removing cholesterol from the system?
For some reason I hadn't registered that the plaque is calcium, I wonder how that might be affected by the fact that I have a very low calcium diet (not dairy or dairy substitute) and no leafy green veg
And bizarrely or another front my bones are extremely dense
Sorry I was forming my reply to your last reply. Gosh 5.07. How wonderful. Mine is much higher with lots of calcium build up. But how awful you are being ‘chased’ for such a low level of cholesterol. Originally (although I can’t remember precisely) the level was over 6 that was considered a problem. Over the years it has reduced and reduced, without any real evidence according to Dr Malcolm Kendrick et al.
As if we are not under enough pressure. I have come across my first intelligent GP to whom I was discussing having reduced my Levo because I was under the impression that my NHS endo was going to treat me. She said without any prompting from me “Ah that is why your cholesterol level has shot up”. So some (so few) doctors understand the relationship between hypothyroidism and raised cholesterol levels. Proper treatment for hypothyroidism is always necessary first before any concerns about so-called high cholesterol levels.
The calcium and cholesterol (LDL) are components of the plaque that causes build up in the artery walls. However, I read HDL may help remove the LDL from plaque. Plaque has other components such as dead cells, etc. I supplemented serrapeptase & other enzymes that reduces fibrin after a bad leg injury last year. Research shows this to improve cardiovascular health.
Well that is interesting. I am doing the Linus Pauling method but still working up to the daily amount of Vit C he recommends.
“Serrapeptase & other enzymes” sounds very interesting indeed. Can you tell me more?
I have an appointment with Paul Robinson in the not too distant future to further discuss my situation but I am honing in on my problem from as many angles as I can!
I don’t know if plaque is calcium. It’s kind of what we are led to believe. I am under the impression that plaque (cholesterol) is what forms in the tunnel part of the artery. It is attracted to calcium damage found within the artery wall itself and plants itself over any damage, like a band aid. It helps stop rupture of the artery caused by said calcium build up. The plaque can however break off and cause a heart attack under circumstances where the calcium is already set down. So really it’s more of a life saver. The ‘damage’ caused by calcium is quite different. It’s the real problem, it is set down within the walls of the arteries, making them less flexible.
Hypothyroidism itself is responsible in our case for also making the heart blood vessels less flexible.
If you have strong/dense bones hopefully you particularly don’t have to worry about calcium in the walls of the arteries and consequently have even less need to worry about any plaque forming in the vessel part - no matter how high your cholesterol levels. Cholesterol will pass through without stopping. In fact cholesterol is used for all sorts of processes in the body and the last thing any hypothyroid needs is to mess with the process of cholesterol production.
This is why I ask the question, what is it in cholesterol which produces the calcium damage in the first place (that we are led to believe) or does it? I really can’t see how cholesterol is the problem. The problem is calcium being set down where it’s not designed to be, within in the artery walls. Lack of magnesium is one thing that appears to allow this to happen and nothing whatsoever to do with cholesterol. Remember your K2 and Vit D3 to also direct calcium away from the heart.
The ‘problem’ is there are (at least) two processes going on with CAD and the wrong one is being tackled.
In fact as you will find, people with higher cholesterol live longer. Cholesterol is not the problem.
My LDL was 3.89 when my thyroid was unbelievably over medicated in mid September (when I took my thyroxine about an hour before my test) - before that it was 4.1-4.5 going back to 2007
Sorry I misunderstood about the calcium
I am supplementing K2 D3 and magnesium (although I'm intending on changing the type of magnesium)
For information my Serum non HDL is 7 now (5.49 in Sept and 6.07 before that) & my HDL is .91 (with a high in 2007 of 1.3 then it wobbles between .73 & .89)
Quite. Katy See radd reply to me. She says cholesterol and calcium make up this horrible plaque stuff. Since lowering my Levo, my cholesterol jumped back up to 8. something. On Levo alone it dropped from 9.9 to 6.8. Still not good enough for doctor but I am yet to be optimally treated.
I hope radd can give me more info.
Did you feel over medicated or was it doctor panicking about low TSH?
Sorry to disappoint arTistapple but I’m not awfully knowledgeable on cholesterol and never bothered trying to lower my previously high levels with anything other than a good diet and exercise. Cholesterol is useful unless it is building up in the lining of the arteries. It’s been years since levels were tested but I read they will done within the new health ‘Long Term Conditions Reviews’ being rolled out.
My reference to serrapeptase was it reduces inflammation by breaking down and ‘eating’ dead or damaged tissue and fibrin. This is a component of the plaque that forms within the arteries making them stiff and narrow, so in effect the serrapeptase could dissolve plaque.
It you google something like ‘serrapeptase and arteriosclerosis’ you can read research yourself but be aware the use of serrapeptase is controversial. It has been banned from sales in Europe as is not a ‘novel’ food, and there is not enough research to prove its safety in all people. I had mine shipped from America.
Regarding thyroid hormones and cholesterol, un/mismanaged hypothyroidism slows correct utilisation and clearance, resulting in cholesterol build up. Getting thyroid hormone levels correct and working well should bring cholesterol levels back to good levels and ratios. Thyroid hormones will also help reduce chronic inflammation that can run high in Hashimotos, lessening the chance of plaque forming within the arteries.
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
I was on 25 for about 4 months then on 50 for about 6 months then I had a really "over medicated" blood test (that they sprang on me at an over 50 check & i had taken my levo) so they asked me to drop it back to 25 & I refused
12 weeks later I had a very undermedicated blood test and they put it up to 67.5 on 30th December
I am 76 kgs
My local expert doesn't think I should be medicated at all
Lipid specialists seem to be a new breed. My husband was on statins, had awful muscle pains, could hardy walk, and kept asking for an alternative. Eventually his GP said he could send him to a lipid specialist who might offer an alternative, but the waiting list was very long.
Meanwhile my husband saw a private cardiologist for something else, who suggested he have injections of Inclisiran (brand name Leqvio) instead of the statins and that they are what the lipid specialists prescribe. He also said that, in some areas GPs can also prescribe them, but are very reluctant to. He wrote to the GP, and after some lengthy phone 'discussions' over the next three months, my husband was finally offered the injections at the GP's surgery. Whether or not a patient actually gets them without seeing a lipid specialist definitely seems to depend on the area, we certainly had to persevere and the initial excuses were - letter not received for over a month, cardiologist not a lipid specialist, GP needed to discuss with rest of practice, not sure when next practice meeting would be etc..
Incidentally, my husband had already had the tests you're hoping for, due to a stroke, and I wish these tests were easier to get than waiting months for such referrals!
At my husband's follow-up cardio appointment, the cardiologist was delighted, and said he was pleased not just for my husband, but for all the men at my husband's surgery who needed the injections but didn't have wives who knew how to argue 🤣😂🤣
I knew it was originally something like that, however I read that the NHS eventually negotiated a hefty discount with Novartis, and that one of the reasons why GPs didn't want to give it was because initially they were going to be paid something like £20 per injection, but this was halved after the discount was agreed, which they didn't like. From the financial point alone I can understand why it took a while for ours to agree, it's a disgusting price, but makes up a bit for all the private doctors I've have to consult, and the thyroid hormones I've had to buy for over 20 years, because that same practice said my blood tests looked normal to them! Different budget allocations though, I know
Inclisiran (Leqvio®) orders for NHS prescriptions – check your invoices
Dispensing & Supply
Monday 27th January 2025
Community pharmacies are reminded that Inclisiran (Leqvio®) 284mg/1.5ml solution for injection pre-filled syringe is available to order from the nominated wholesaler AAH UK at a nominal charge of £45 per pack for supply against NHS prescriptions, as agreed within the commercial agreement between Novartis Pharmaceuticals UK Ltd and NHS England. A summary of the current NHS funding and supply arrangements for Inclisiran (Leqvio®) can be found here.
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