Referral to lipid clinic for High Cholesterol p... - Thyroid UK

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Referral to lipid clinic for High Cholesterol plus private appt and bloods

KatyMac68 profile image
37 Replies

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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KatyMac68 profile image
KatyMac68

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

jimh111 profile image
jimh111

Can't comment on other points but there is no useful blood test for magnesium status

KatyMac68 profile image
KatyMac68 in reply tojimh111

Thanks, I do supplement but who knows!!

helvella profile image
helvellaAdministrator

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.

KatyMac68 profile image
KatyMac68 in reply tohelvella

Thank you

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 ?

KatyMac68 profile image
KatyMac68

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)

Obsdian profile image
Obsdian

My magnesium test was definitely called magnesium

KatyMac68 profile image
KatyMac68 in reply toObsdian

Fab, so i def haven't had one!! Thanks

arTistapple profile image
arTistapple

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?

Confused.com

helvella profile image
helvellaAdministrator in reply toarTistapple

My personal understanding is fragmentary and not sufficient to provide a coherent and proper answer.

What I don't want to do is try to explain and, by so doing, end up passing on bad information.

arTistapple profile image
arTistapple in reply tohelvella

My thoughts are if you don’t know the answer then perhaps my query has some merit. No doubt we will learn over time.

KatyMac68 profile image
KatyMac68 in reply toarTistapple

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

KatyMac68 profile image
KatyMac68 in reply toarTistapple

Lipid clinic is because of "Serum LDL cholesterol level 5.07 mmol/L; Consider the possibility of FH (familial

hypercholesterolaemia), especially if there is

personal/family history of premature CHD (MI <60 in

first degree relative or <50 in second-degree

relative). All with FH should be offered a referral to

the Lipid Clinic for confirmation of diagnosis and

initiation of cascade testing. NICE guideline 71" as a note on my Serum LDL cholesterol level (which was 5.07)

arTistapple profile image
arTistapple in reply toKatyMac68

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.

radd profile image
radd in reply toarTistapple

arTistapple

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.

Better than statins!

arTistapple profile image
arTistapple in reply toradd

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!

arTistapple profile image
arTistapple

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.

KatyMac68 profile image
KatyMac68 in reply toarTistapple

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)

Who knows what goes on

arTistapple profile image
arTistapple in reply toKatyMac68

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?

radd profile image
radd in reply toarTistapple

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.

arTistapple profile image
arTistapple in reply toradd

Yes I have already looked and you are correct. Some unflattering comments. Still something to think about. Thank you for the pointer.

KatyMac68 profile image
KatyMac68

Um I was on 50 and woefully undermedicated, and approx 12 weeks later my TSH was over 10!

I'm now on 67.5 (well 50 one day and 75 the next) & I still feel undermedicated

SlowDragon profile image
SlowDragonAmbassador in reply toKatyMac68

How long have you been on just 62.5mcg

That’s a very low dose Levo

Approx how much do you weigh in kilo

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

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)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

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

TSH should always be below 2 on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

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).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

KatyMac68 profile image
KatyMac68 in reply toSlowDragon

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

SlowDragon profile image
SlowDragonAmbassador in reply toKatyMac68

they put it up to 67.5 on 30th December

It’s actually 62.5mcg if alternating 50mcg and 75mcg

Which brand levothyroxine are you taking

Do you have 50mcg tablets and 25mcg tablets ?

Bloods need testing 8 weeks after increase …so week of Feb 24th

Test day after 50mcg dose

76kg suggests eventual daily dose will possibly be approx 112.5mcg per day

My local expert doesn't think I should be medicated at all

Presumably a diabetes specialist?

KatyMac68 profile image
KatyMac68 in reply toSlowDragon

Sorry brain blip - I'm on 25s wockhardt

On the hospital website he is listed at thyroid

Next blood test is 3rd Mrch as it was the soonest early morning I could get

I have my next lipids on 20th Feb - this time I didnt take my levo in case they sprung a test on me, I'm not sure what to do next time

SlowDragon profile image
SlowDragonAmbassador in reply toKatyMac68

Generally don’t take Levo until after an appointment in case of surprise test

Or say “oh I am taking high dose biotin so need to stop that 3-5 days before any blood test ……will need to rearrange test for another day “

KatyMac68 profile image
KatyMac68 in reply toSlowDragon

Do you guys keep a list of unhelpful consultants? If so I have a contribution 🫣😜

SlowDragon profile image
SlowDragonAmbassador in reply toKatyMac68

It would be a very LOOOOONG list

KatyMac68 profile image
KatyMac68 in reply toSlowDragon

🤣🤣🤣🤣🥰

Framboise profile image
Framboise

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 🤣😂🤣

helvella profile image
helvellaAdministrator in reply toFramboise

Very glad he is doing well.

But somewhat shocked at the price! 198736 pennies - towards two thousand pounds - for a single injection.

dmd-browser.nhsbsa.nhs.uk/a...

And, amazingly enough, it rose by 36 pence in August 2024.

Screenshot of product on dm+d database
Framboise profile image
Framboise in reply tohelvella

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 ;)

helvella profile image
helvellaAdministrator in reply toFramboise

Ah - I think I see. :-)

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.

For NHS orders of Inclisiran (Leqvio®), the nominal price should be reflected in your wholesaler invoice and pharmacies should not expect to incur any additional charges or fees from AAH UK. However, Community Pharmacy England has received a few reports of some pharmacies being incorrectly charged the full NHS list price of £1987.36 per pack instead of the nominal price of £45. Pharmacy teams are advised to check their wholesaler invoices to ensure they have been charged the correct price by AAH UK for Inclisiran (Leqvio®).

Pharmacies that have been charged incorrectly for NHS orders of Inclisiran (Leqvio®) can request a repayment of any additional costs. In this first instance, pharmacies are advised to contact AAH UK directly. If the issue remains unresolved, the query can be escalated to Novartis Pharmaceuticals UK directly on 08457 419 442 or via e-mail commercial.team@novartis.com. To support investigation of any pricing issues, pharmacies should submit copies of invoices to AAH UK and Novartis Pharmaceuticals UK. Should no resolution be identified by the suppliers within 5 working days of receipt, then contractors should escalate to Community Pharmacy England.

Please note for dispensing against private prescriptions, stock must be obtained directly from Novartis Pharmaceuticals UK Ltd by contacting Novartis Customer Care on 08457 419 442 or via e-mail commercial.team@novartis.com. This will be charged at the current full NHS list price of £1987.36 per pack.

Background to the inclusion of Inclisiran (Leqvio®) in Part VIIIC of the Drug Tariff

Inclisiran (Leqvio®) is listed in Part VIIIC of the Drug Tariff.

Products listed in Part VIIIC are available at nominal prices because of commercial deals in place between the manufacturer or supplier and NHS England which allows manufacturers to supply a drug to the NHS at a reduced cost compared to its published NHS list prices as authored in the NHS Dictionary of Medicines and Devices (dm+d).

Part VIIIC also includes products which the Secretary of State has centrally secured and has made arrangements for the product to be supplied to pharmacies, whether directly or via an intermediary, at no cost to the pharmacy for example, COVID-19 antiviral treatments.

Further information on Part VIIIC can be found here.

For any queries regarding the supply and reimbursement of Inclisiran (Leqvio®), please contact our Dispensing and Supply Team by emailing ds.team@cpe.org.uk.

cpe.org.uk/our-news/inclisi...

KatyMac68 profile image
KatyMac68

So my triglycerides rose after the fasting test (the fasting was very hard on me)

& on the NHS app I have an appt for the lipids clinic at 1:18 in the MORNING

With a note that I'm not to attend the appt or change it as its an administrative action

KatyMac68 profile image
KatyMac68

Results

Serum LDL cholesterol level Not calculated; Calculation of LDL Cholesterol is invalid as

Triglyceride is greater than 4.5 mmol/L. Please

ensure fasts of >12 hours for future lipid requests.

****

Serum HDL cholesterol level

Serum HDL cholesterol level 0.89 mmol/L [1.15 - 1.68]; Below low reference limit

Serum cholesterol/HDL ratio 8.40

***

Serum lipid levels

Serum cholesterol level 7.48 mmol/L

Serum triglyceride levels 4.83 mmol/L [0.3 - 2.3]; Above high reference limit

****

Serum non high density lipoprotein cholesterol level 6.59 mmol/L

Edited to format it better reedited to add stars as it was all mushed up together

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