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cholesterol.

Don't know if anyone is still reading as its now got a little boring, but I said I would keep the thread updated.

Had my phone appointment today with someone from the lipid clinic, I didn't catch her name it wasn't the consultant though. Maybe a registrar? Don't really know what to report really, the appointment was basically just a question and answer session. She asked about family history, diet, exercise, whether I smoked and how much I drank, she mentioned my health and asked what meds I take (I don't take any). We discussed diabetes a little bit and my low carb diet, she commended me on my levels, said I was in remission which is more that my GP says, so I recommended that she visit this website as she would read of many more people who were managing their diabetes by diet. After the Qs she said she didn't think from what I had told her there was a specific family risk of heart disease. I do have family that have had heart attacks in their 50s but not fatal.

After discussing my diet (I'm now living on extra virgin olive oil which I hate) she was hopeful cholesterol would have come down a little but then said it needed to come down to 4.5 which is never going to happen any time soon, apparently it was 5.5 in 2016 when I was still eating carbs. She mentioned the measures they use to assess risk and that my LDL would indicate an increased risk of having a heart attack in the next 10 years. She said that if I cannot get my levels down it would be necessary to treat with medication No surprises for guessing what she meant. I told her I would not be happy to take statins as I had read contradictory reports and was quite skeptical as to the benefits of statin, I was concerned that my sugar levels would rise which I would not be happy about considering that Covid is around. I said I felt they were only beneficial if the person had already had a heart attack but was wanting to privately pursue other testing options to see whether I had cause for concern or not after which if the results were bad I may have to reassess things. She was very nice but I didn't convince her, not even when I mentioned how good my Trigs were, she just said that there was a range of statins and they should be able to find one which was suitable. Didn't bother going into any greater detail of how detrimental statins could be, didn't feel it was doing any good and I didn't want to antagonise.

Going forward, she is going to arrange a cholesterol blood test at the hospital she touched on genetic testing but she was non committal whether this option would be actively pursued, it think it may depend on what the consultant decides when she discusses this appointment. I hope I didn't come across obstructive, it may be useful to go through the DNA investigations if only for my family's sake. Bit concerned in case the blood test comes very soon as although it is unlikely I can reduce my cholesterol levels enough through diet alone, I would appreciate the chance. I might need to experiment with the Feldman protocol in readiness for my next test. Wouldn't that be a shocker if it worked for me. Anyway she said she had enjoyed talking to me, I hope that was true....I was on my best behaviour.
 
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Ryhia - I have a telephone appointment with my (new to me) GP tomorrow to discuss two, from a raft of, tests that have come back out of range.

My thyroid, I can blank, as my Endo was happy with the TSH further out of range, which often happens on the medication I take. I'm also due back at the Endo next month too, so I think that's dealt with.

The other test is my total cholesterol of 6.6. I predict a conversation I have had before, so we'll see how that goes.
 
I hope everything goes ok for your appointment and that you have an understanding and forward thinking Doc. Please report back.
 

Rhyia, I don't know if you're already doing this, but if not, have you considered adding psyllium husk or ground flax seed and green tea to your daily menu?
see this link from Mayo clinic in USA
https://www.mayoclinic.org/diseases...cholesterol-lowering-supplements/art-20050980

It is interesting the focus on the LDLs though, particularly if your HDL and Trigs were good, since I've read that for women over 50 (not sure if that's you, but it is me!), low HDL is a fourfold better predictor of cardiac risk than high LDL. I'm trying to find this reference in my collection but it's escaping me at the moment. Seems that I wrote down the snippet but not the full reference. I think it was from Harvard Medical School. Will post if I can find the darn thing.

Over the weekend I've watched quite a few videos from the 'carb addiction doc' mentioned by someone else earlier and he had some interesting things to say about keto diet and cholesterol and statins, might be worth a look
'LDL critical to human health'
'Cholesterol and Statins'

Hope that's not information overload! I tend to go down the rabbit hole after things and this one is relevant to me as I'm pretty sure my GP will want to 'have the chat' with me next visit unless my next round of bloodwork has improved significantly.

And well done you for being on best behaviour by the way
 
Hi @OzBlossom, I can say I was only on my best behaviour because I thought they might have "binned" me otherwise for being uncooperative. I definitely got the impression that I was not her usual sort of patient.

I do occasionally use psyllium husk for cooking and I have been adding much more flaxseed to my diet in the form of flaxseed porridge. I've also changed my cooking fat to extra virgin olive oil, just about been drinking the stuff, (yuck), I eat lots of nuts and try to have at least half an avocado a day and I have included much more fish. Still eating fatty meat though. I am actually considering trying artichoke as well as the tubers are supposed to be very good for lowering cholesterol and even blood sugar, don't know how true that is but their carb content is quite high at 26gms for 150gms. Okra is another option, but I find this veg totally tasteless. I cant drink green tea as it makes me nauseous

To be honest though, I'm pretty sure I'm wasting my time as it's pretty impossible to get my levels anywhere near what they want in a short space of time if ever. I tested my cholesterol a couple of weeks ago so I know its nowhere near 4.5, I think it was about 8, it was hard to tell. I also don't even know if this blood test will be a simple lipid test or something in more detail, she caught me off guard when she mentioned an imminent blood test and I didn't think to ask any details about it. I also regret not asking if it could be delayed. Once I receive my appointment through I will likely phone to see what is what..

I think I may have seen the videos you have posted but will watch again to make sure. And yes I am well past the age of 50 (late 60s) and I did mention to her that research shows it is better for me to have higher cholesterol but my comment was graced by silence. Perhaps she didn't read that paper?

To be honest, I feel as if the appointment and any follow up is a little bit of lip service, I hope its not the case and that they will decide to investigate my genetic disposition but I'm not holding my breath. If they want me to consider taking statins then I need more persuasion than someone just talking about LDL risk scores and dismissing my Trigs and HDL ratios, doesn't really cut it for me.
 
Hi @Ryhia .
Yes I am still reading. Well done on the conversation with the consultant / registrar. I think they get a bit stumped when someone has some knowledge of their condition.
As we are of similar age, and gender, and I have been diagnosed with F H, albeit many years ago, and on the basis of blood tests and family history, I am particularly interested in how things are working out in your investigations. (Apart from the fact that I am also nice enough to care for your own sake, that is ). Knowing what to do for the best is difficult, particularly if there are kinfolks / offspring who might benefit from your knowledge. As one who went down the statin and Ezitmibe route, a long time ago, based on medical advice and knowledge at the time, I am now at the stage were I am not sure if having not had any adverse vascular or cardiac events is due to the medication, the diet and lifestyle, dodging the bullet of family genetics, simple good luck, or something else. I have been considering coming off the meds, but wonder if that would be tempting fate. Probably need to do a bit more reading, and research, as I am certain no HCP would agree it is a good idea. As it is not possible to get routine blood tests at the moment where I live I am putting off making any decisions. Of course, anything decided has to be after considering personal pros and cons. Good luck whatever you decide.

As an aside, if you can’t bear the taste of the olive oil, have you considered trying coconut oil instead? Much more palateable. I could , literally, eat it by the (large) spoonful.
 
Well, @Ryhia , the Doc called, as promised. Interesting little chat.

As predicted, she wanted to talk about my lipids and cholesterol and touched back on my Vit D which was a bit high, but I had already agreed a way forward on that with the metabolic bone folks, so that was quick.

She next went to my thyroid, and we quickly agreed that would be left to the specialists, bearing in mind I'm due there in 3 weeks. (I'd wager that will be another phone call, but so be it - better than it not happening.)

The we turned to my lipids. She told me it was a bit high, and went on to tell me the QRik score she had for me indicated an elevated risk of CVD.

In return I expressed I'd had a look at my ratios, which all seemed to be good, if not in some cases, optimal, and concluded that the total was just a number, which, in my case was inconveniently high.

She referred back to the QRisk score, which I disagreed with. Unfortunately, she didn't help herself by literally guessing at my height and weight and BP. The BP was wrong, but I didn't enquire about the height weight she has settled upon.

My QRisk score, using QRisk3 - depending on whether my T2 (one sole A1c in the diabetes range) was taken into account or not were either a little better or marginally worse than the national average. Based on the average, I was bang on, except for my heart age was slightly lower than my lived age.

She tried to start going around again, but I explained to her that I had read extensively, and based on my reading, plus a lack of CVD in the family history known to me, I wasn't convinced of a benefit to me in embracing statins. I further explained that having presented to her with hand pain, which is still being investigated, I would not be keen to start on a statin which could potentially make that worse.

At that point she agreed. Yay!

She was pulling the call to a close, by saying, "we'll just continue as we are", when I had to bring her back on (my) track, by asking her what the next steps were for my hands. She seemed to have forgotten that, and assumed they weren't hurting any more, just because the rheumatoid factor and other antibodies were negative. If only it worked that way?

Next steps for that are a Rheumatology referral, and X-rays on Thursday afternoon at the local cottage hospital.

I learned a lot about my new (to me) GP today.

Keep us in the loop for your journey, Ryhia. It's all part of our education.
 

I received a letter in the post today, it was a copy of the letter the Doc has forwarded to my GP I was surprised it had come so soon. She said it was a pleasure to speak to me, so it looks like I didn't antagonise her The letter was just basically a it record of what had been said in the appointment (with a couple of misinterpretations) As part of the header she had written "Probably polygenic hypercholesterolemia". at the end she has written that I "do not fulfil the Simon Broome criteria for familial hypercholesterolemia and therefore there is no genetic test advised." So not FH I guess. You may be interested in the calculator: https://www.mdcalc.com/simon-broome-diagnostic-criteria-familial-hypercholesterolemia-fh

The forward plan is to let me try to treat by diet but also repeat a lipid panel profile with lipoprotein (a) and Apolipoprotein B100. And review in 6 months. After which if levels are not 4.5 (in my dreams) "She would need to be started on medication" ( her words -and it's er no, unless I agree) Plus I'm not sure if she means my cholesterol needs to be 4.5 at the blood test or the 6 months review. Unless I have misinterpreted what she has written, it doesn't look as if they are going to investigate further regarding the polygenic H, but it may be interesting to see what these test reveal - I hope I get to find out and I hope its good news.

Regarding your situation, you have been taking statins for a very good reason and even some of the sceptics agree that statins are helpful for those with FH. If you are wondering about your continuance to take them, I wonder if it is worth having a chat with your GP to see if you can have a review although I suspect the technology has not really changed since you were first diagnosed.. Worthwhile the ask though.

I am concentrating on extra virgin olive oil as I read somewhere that it is useful in lowering cholesterol and can even have an impact on LDL oxidisation. I am sure I will learn to like it spoonful by yucky spoonful. ,
 

Don't mind keeping you in the loop but not sure its all that interesting - as mentioned already its likely to be more blood tests but no genetic testing. What you mentioned about QRisk was interesting though as whilst we had talked about "risk" I didn't know it was referred to as QRisk(3), consequently I have been playing about with a Qrisk calculator at https://www.qrisk.org/three/index.php, manipulating the figures to give myself a better score. My actual score was 19% which is not good but take off the Diabetes attribute and what I think my Cholesterol may be now and my score goes down to around 10%, I become younger as well. No one every achieves 0% of course. Even in the best case scenario for my age it came out 6% so well done on achieve 10% without any manipulation. I actually wanted to check the score as I couldn't hear very well but I had thought she said that as I was in remission the Diabetes diagnosis didn't have an impact yet it was included in the scoring.

The recommendation of course was statin but she is letting me try diet first. I'm currently looking at the NICE guidelines for Cardiovascular disease risk assessment and prevention - I'm not impressed.

Well done on getting a good result when discussing statins and for bringing the discussion back to the original reason for the appointment- I would have got caught up in the discussion and let the appointment be derailed then beat myself up about it afterwards so its good that you persevered and achieved a referral to Rheumatology etc. Hope everything goes ok.
 
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I always look upon medical appointments like business appointments, and try to prepare well. This is where access to our medical records serves us so well.

The only manipulation I did on the QRisk scores were to toggle in and out the T2 diagnosis. Being 7 years out from my sole diagnostic level A1c, and it'll be 7 years from my first remission level (in my case 37) A1c in February, I feel there may be some latitude in that tactic.

Of course, I have zero idea if any harm was done leading up to that diagnosis, so for me, taking the average of T2 included/excluded took me from 9% (T2 included) or 6.6 (T2 excluded) to an average of 6.85%. I am very fortunate all the other markers are also good.

It's only when it comes to that chat at the Pearly Gates (or the edge of Hades) that I'll know if my personally applied risk assessment served me well or not, but it had been my choice and I will bear the burden, should I have got it horribly wrong.

I have an open mind about the Rheumatology referral, as my blood markers suggest not RA (which would be good, so don't get me wrong. RA is a vile condition.), although like most AI conditions, it is possible to be sero-negative RA (just as it is to be sero-negative T1). Maybe today's x-rays will help with the puzzle.

Going back to your opening remarks, I think that although we might find our own stories to be a bit boring/frustrating/or that they don't make sense, sometimes there can be something in there to help another person. It's the value of the community and sharing.
 
Thanks for this info, @Ryhia . I could do with some more reading and pondering before making any decisions. As thingsfor me have been on a fairly even keel for a while as far as cholesterol levels go I am thinking maybe leave meds as they are. The decision will be my own, as GP has gone AWOL, no appointments and no blood tests for the forseeable future. I anticipate that even if I was to get consultation he would follow the NHS mantra and recommendations. I do have an annual check with immunologist next month. Maybe persuade him to add to blood tests I have for that.

I guess six months to work out your own solutions before review will give breathing space. Wish you luck with it all.
 
@Pipp, whilst looking for a different reference I came across this link https://thefhfoundation.org/fh-diagnosis-management-and-family-screening just glanced at the document which seems to be take statins and eat low fat, but it does show the different methods of diagnosing FH may be of interest to you. I was a little concerned that they were talking about feeding statins to kids though. I hope there has been some thorough unbiased research around this.
 
Am reading this thread with great interest. Just a note on replacing olive oil with coconut oil though - coconut oil is loaded with saturated fat! (As is palm oil)
 
Dr Snoddy said:
Am reading this thread with great interest. Just a note on replacing olive oil with coconut oil though - coconut oil is loaded with saturated fat! (As is palm oil)
Click to expand...
Coconut oil is one of my sources of fat. I use the oil and the heavy coconut cream more so than any other added fat. I’m not suggesting anything, just that I use it and my lipid panels are ok
 
Been having a read. Thanks, @Ryhia
It does seem alarming to be suggesting statins for children.
On refelection, I think now is not the time for me to altercanything in any of my treatments. I am on quite an even keel with everything, but have not had any monitoring for most of this year. Ido wonder about my FH diagnosis , probably more than 20 years ago. At that time I was following the Eatwell diet recommended, and gaining a lot of weight, despite this. Cholesterol levels were off the scale, and my life was extremely stressful at that time, too.
I do need to read more, and considering reducing Ezitemibe and seeing how I get along. Of course, that will be dependent of blood test first and due to current restrictions for Covid, that is not being offered at the moment.
 
LaoDan said:
Coconut oil is one of my sources of fat. I use the oil and the heavy coconut cream more so than any other added fat. I’m not suggesting anything, just that I use it and my lipid panels are ok
Click to expand...
I used to use it too but I stopped using it a few months ago as I read it wasn't that good for you, I have read other articles since which say the opposite so I am not sure what to believe but as I no longer use it as a fat, I decided not to reintroduce it. That said without even thinking, I had a chicken korma the other day which was made with coconut milk. Just checked 1 cup (226g) contains 42.7g of saturated fat. Its still a learning curve I guess.
 
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Dr Snoddy said:
Am reading this thread with great interest. Just a note on replacing olive oil with coconut oil though - coconut oil is loaded with saturated fat! (As is palm oil)
Click to expand...
Thanks for reminding me about the saturated fats.
 


Hi Rhyia, I didn't fit the criteria either (nothing in the family heart wise etc), the only thing I had was a total level of 8. (HDL 2.4, trigs 0.5, LDL 4.8). I made a bit of a fuss about not going on statins so in the end the Consultant said 'oh let's do the DNA/FH tests'. I think it was also to do with the fact that they had just set up an FH testing group and they were clamouring for patients. x
 
I too plan to make a fuss about going on statins but I am biding my time. I don't like my levels so high so I admit I am trying to change things, its fair to say I'm probably eating a low carb, moderate fat diet now rather than low carb high fat. I am not sure it will help but I feel I must give it a go. I have used some cholesterol test strips and have noticed a small difference but whether that's temporary or not remains to be seen.
 
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