Disappointment at a Consultation

[DakCB-UK]

So I saw the consultant and basically nothing's changed. TC 5.0mmol/L, LDL 3.7 (target 4.2), HDL 1.0, Tri 0.3, all within 0.1 of last year IIRC. I've put on a little weight and waist and my CK (en.wikipedia.org/wiki/Creat... levels are up, but I was borderline-underweight before and those changes might be attributable to actually exercising properly through the winter. The last few years, I've been ill enough or snowed in or had other stuff happen that I'd not exercised well in the weeks before the blood test. I've a retest in a month just to check CK isn't increasing.

Bottom line: the results were rather disappointing in two ways.

Firstly, it seems that the UCLP diet has produced no change from what I did before (a vague effort towards sensible eating like I've been told since the 1980s with a few changes as the advice changed). From what I've read in the past, I expect UCLP will work for some people but it doesn't work for me.

Today I think I'll probably stop most of the changes because I don't feel like it. For example, soy beans are a nice snack but I don't like them that much and they're rather irritating to find in shops. I'll probably continue with the oat bran because I feel that my digestive system works more consistently (you know what I mean, statin and sequestrant users). The consultant expressed doubts that any diet would produce much change and when I asked about other diets, I was offered an appointment with the dietician, but I declined because I'm not keen to spend more time in that hospital. I don't like it. It's a nasty building and once again, I've a headache after visiting it.

Secondly, I was disappointed that neither the oat bran nor the increased exercise has moved my HDL at all.

I did ask about relative risk, but (my understanding of the conversation - errors will be all mine) my treated risk is considered to be the same as the general population and it seems we'd only get a more precise idea if I have genetic testing, which he doesn't want to do unless I'm going to have children imminently because it's unlikely the findings would change my treatment from what we've arrived at through experimentation over the last 25 years.

The clinic was running late and I'd slightly overrun my appointment, so I didn't ask about polypill or anything else.

Treatment continues as before: 80mg simvastatin daily. Retests next month, then next year.

In a word: NYARGH (is that a word? oh well). Life goes on...

[Aliwally]

Hi DakCB-UK,

It must be really disheartening for you especially after all the effort you've put in and particularly if you didn't like some of the food. At least your levels didn't go up and your triglyceride levels are fantastic.

Anybody can shoot me down in flames but I am coming more to the conclusion that you can't do better than an ordinary balanced diet, I am not particularly convinced by either low fat or stuff designed to lower your cholesterol. If I was a sceptic I would say it was a very lucrative market.

[DakCB-UK in reply to Aliwally]

Actually, I quite like most of the food occasionally, but it's a pain to find enough variety in the shops so it got a bit samey.

Apart from yogurt and the wonderful super-low Wyke Farms cheddar (usually - not always), I don't think I buy much food that has "low-fat" labels. I just don't add much fat (had a tub of marg go mouldy again not long ago - I usually bake cakes occasionally to use it up before that happens!) and after all this time, I think I prefer things that are low in fat anyway.

[Seahorse]

Hi DakCB-UK - I know how disappointed you must feel. Some of my lowest results have been after my diet has been really poor and then other times I've tried really hard and been unpleasantly surprised by my results and feel totally cheated. It's definitely not an exact science!! I just want to eat a "normal" diet, enjoy life and not get too hung up on the fact I have FH.

[DakCB-UK in reply to Seahorse]

Oh yeah. I wanted to give it a serious attempt just to see if I could move to a lower dose of statins because I fear suffering side-effects eventually/sooner on 80 simvastatin. (See my profile for the others I've been through.) It's hard to ignore having FH when the meds are playing up. But that's over now. Back to middle-of-road for a few years, with any luck!

[DakCB-UK]

It's not regimented, but I usually include a few sprints in the bicycle trip home. Like yesterday it was because I tried keeping up with a couple of MAMILs. I was fine over the hills, but lost touch on a sharp bend and couldn't get back on their wheels.

(Dr Eades of proteinpower.com?) Maybe saturated fat can raise HDL levels, but won't it raise LDL too? Also, proteinpower.com/drmike/sta... makes me wonder if he rejects the whole idea of FH.

[Aliwally]

FH is a known genetic condition caused by lack of LDL receptors in the liver, it isn't just because people have been less than careful about their diet or exercise.

People with FH can have double or more the "standard" amount LDL and those with children face enormous dilemmas about treatment with statins. I don't think there is enough research into FH.... I actually don't have it, but families that do need all our support.

[DakCB-UK]

Because (as Aliwally reminds us), FH sufferers have abnormal cholesterol regulation because of our genes.

Also, I don't seem to have the same taste for fat and particularly salt that others do. This might all be genetic too.

It might be that there's been some mistaken generalisation about what's good for the general population based on what's good for the abnormal, but there's relatively little research into this whole topic (compared to some of the headline-grabbers) and only a fraction of that seems to cover differences between FH and general population. More research is required in general.

In my personal case, I'm probably going to keep experimenting, slowly, in consultation with medics, but if this is as good as it gets, that doesn't seem too bad. Time will tell.

[marton]

I was diagnosed with FH 20 years ago. my total chol. was 12 point something. Before going on statins I reduced it by 25% just by cutting out some fats.

[DakCB-UK in reply to marton]

Thanks for that. Thinking about it, that would be entirely consistent with my numbers. My original reading was over 10 (but I don't have the exact reading and my notes are scattered across three regions, seemingly never to be reunited). When I was between drugs but still eating generally well (non-UCLP but some of the same ideas, especially around fats) last year, it was 7.5.

Maybe I'm getting as much dietary benefit as I can already and I'm not one of the lucky very-responsive ones. Not sure I want to test this 25% theory and suffer the hospital overreaction that I'd expect if my levels went up 25%!

[malcolmp]

Seems like you doctors interests lie in keeping you on statins,even though they now come with a health warning in the US that you could develop memory loss and they could actually cause you to develop diabetes by taking them.If i was to suggest you take a natural product that caused all these symptoms the powers that be would be jumping all over me from a great height and yet a pharmaceutical drug is still being prescribed to millions of patients worldwide every day.Obviously money outweighs the risk to the patients health.

[DakCB-UK in reply to malcolmp]

There is not necessarily a link between doctors and what they prescribe (I suspect there is sometimes, but it's not the usual situation). I'm sure most of them are doing what they believe is best for patient health, but it's a balance between multiple poorly-understood risks. Such is any experimental science.

I don't think you're right about the authorities stopping you. They'd more likely want to regulate you like other drugs. After all, the most-prescribed statin (simvastatin) is basically a synthesised regulated and packaged version of a fermented mould, a natural product.

[Floozie in reply to malcolmp]

Just shows how controversial medical advice can be. My husband (aged 74) who has never had an elevated cholesterol & has no family history of heart disease was prescribed atorvastatin a few years ago BECAUSE he has type 11 diabetes. He has certainly developed memory loss (diagnosed by CT scan). I have FH myself so am quite clued up about the subject & I have always felt uneasy about him taking a drug which may not be necessary & more importantly may be causing him some harm, but who am I to go against the advice of his GP? I agree that money outweighs the risk to the patient's health in this scenario, but I blame the drug companies more than the doctors.

[patch14]

Hello, My LDL 3.7 HDL 2.3 Others 0.7 Total 6.7 Am I worried? No. BP 98/60 Weight within BMI (24) After a not very satisfactory visit with GP with an agenda on her part (obviously a vegetarian) Hadn't seen her before, and won't see her again!! Expected me to lose 1 stone (14lbs) and cut out red meat!! Having changed my diet because after nearly 30 years of suffering from IBS I finally got private test done and found out I was dairy intolerant!! Feel better than I have in years!! I take a multivitamin tablet, an Omega-3 tablet, glucosamine with chondriotin (for the joints) a probiotic, and calcium with Vit D. Sounds a lot, but am benefiting. I drink "Oatly" an oat based milk in place of cows milk, eat soya yogurts when I wish, and use "Pure" soya spread on crispbreads. (Can't "do" bread, slight problem with yeast!) If I want to bake or make pastry I use "Stork" block margarine!! (My Grandmother used to use it, and it's still made!!) I noticed that you may have transposed LDL with HDL (LDL is the so-called "bad" one which is the one "they" want you to get down.) I am afraid that I am one of the new breed of cholesterol doubters. I have read copiously about it and am more and more convinced that there is more to be found out about the truth behind all the hype on this "condition". We need cholesterol to survive. It helps us to heal when we are injured or sick. The brain needs it to operate. I need to read much more before I would even consider any chemical intervention (statins) They seem to do more harm than good. Anyway, that is my opinion. No doubt there are others who think I am talking through my hat!!!!!!!!! All the very best to you, and don't be too concerned. Your levels, (if you believe them to exist!) seem OK to me. Keep eating healthly, take your exercise, and don't stress. That causes ill health!!!

[DakCB-UK in reply to patch14]

Not a transposition: I was hoping the diet+exercise would have increased my rather low HDL. No such luck.

[Aliwally]

Hi Patch,

You sound like you are doing fine. There is nothing that annoys me more than a GP with an "agenda" ! I'm sure most people on this site know more about statins than most GP's anyway... sorry if this sounds big headed.

I keep wobbling on and off the fence about statins for primary prevention...but I don't think I would if I had FH, that is a different ball game. Keep well.

[patch14]

Have you seen the YouTube recording of Dr Malcolm Kendrick giving a lecture on the "Great Cholesterol Con" He has some interesting things to say and mentions FH. Worth a look, even if you don't agree with him. The sound is a bit dubious but with earphones plugged into my laptop I heard him clearly. Give it a try and see what you think.

[DakCB-UK in reply to patch14]

I'm not in a place where I can download YouTube clips (too expensive), but what I've read from Dr Malcolm Kendrick makes me feel that his experience of FH is limited and he seems to have unwisely become a rabble-rouser for the Daily Fail generation. I would caricature most of his advocates as people who never learned at school that no experimental science provides absolute cast-iron facts and that medicine is one of the least certain experimental sciences of all, who now blame "Science" for the difficulty they face in accommodating probabilities and relative risk and who will gladly leap zealously on any absolute certainties that anyone offers, including for example that statins never do no-one no good.

I'm pretty sure Dr Kendrick realises that the situation is much more nuanced than that, given that I've read him quote HL Mencken ("For every complicated problem there is a solution that is simple, direct, understandable and wrong"), but I feel either he is arguing against points almost no-one makes (such as that eating less saturated fat or taking statins is sufficient) or he needs to fire whoever writes his zealotry-laden headlines.

[patch14]

I see that you do not agree with Dr Kendrick's philosophy ( and he is not alone) and that is your choice. The science of medicine has always been controversial. It has always had critics both for and against new thoughts and old beliefs. As such, I am of the school of questioning any decisions that a Dr may make of any treatment that a patient may be offered. The Dr should always lay out the whys and wherefores of his/her decisions and should explain exactly why these decisions had come about so that the patient should be in a position to make an informed choice as to what treatment is acceptable. Gone, I am glad to say, is the "Dr knows best" that our parents and grandparents believed. I think we are much more informed and thanks to forums like these we can discuss our individual cases and thoughts without prejudice.

All the very best to all of us who are trying to lead a normal, healthy and with or without drug support a happy life.

[DakCB-UK in reply to patch14]

Where do you see that? I don't know Dr Kendrick's philosophy and I think what I've read from him suggests that he realises that the situation is much more complex than most of his advocates suggest. You appear to be another one who likes jumping to conclusions - about cholesterol, about medicines and now even about me!

[Aliwally]

I suppose also it must be quite threatening for some health professionals to realise that their patients have the means to be as informed as they are. We don't suddenly lose our marbles as soon as we walk into a hospital or GP's surgery. If I'm expected to take medication for the rest of my life and I'm not ill, I think that it is reasonable to want to know everything....or am I being bolshie?

My local pharmacist reminded me that when he started his career he wasn't allowed to put the name of the drug on the packet or bottle. As a child I remember "The Mixture" or "The Tablets". That would be absolutely unthinkable today.

[DakCB-UK in reply to Aliwally]

You can want to know everything, but not everything is known about this yet. If it was, there would be no need for further research and experimentation. We must live (hopefully live!) with some uncertainty.

[patch14]

Hello DakCB-UK I apologise if I misinterpreted your response to my earlier post, I was certainly not trying to upset you., Health is such a subjective topic, personal health even more so. I agree with Aliwally that we are quite capable of asking questions. That's why when my sisters in law were both diagnosed with breast cancer within a year of each other they insisted on writing down all the questions they wanted to ask before they went to see their consultants. That way any news, bad or good, would not divert them from getting all the information they needed to get the treatment they wanted. Thankfully, they are both in full remission and are thriving.

All the best of health to you all