Rising Blood Sugar... (Agian please read)

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Nocturne

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Earlier today, I was sent home from the lab before starting an oral blood glucose tolerance test due to my very high fasting blood glucose: 115 and 118 on the recheck. I had not eaten in over 10 hours.
I did some digging in my records about my FBG. Here is what I got:
* FBG May 2015 (BEFORE the majority of my 50+ pound weight loss and BEFORE starting any statin): 94 MG/DL
* FBG Sept 2017 (months AFTER getting on 20 mg Crestor): 102 MG/DL, then 105 MG/DL
* FBG Nov 2017 (AFTER restarting 1200 mg niacin for a week after a 2-week hiatus due to surgery): 115, then 118 MG/DL

It would seem that the niacin (and the statin) has adversely affected my FBG. Very, very frustrating that losing over 50 pounds and radically altering lifestyle has resulted in a net 20 point RISE in FBG!

I cannot afford to add diabetes to the donkey's burden.

My thoughts are that in an ideal world, I would switch from Crestor to Pravastatin, which apparently protects against diabetes (although it is less powerful than Crestor), and get on a PCSK9 inhibitor to make up the difference in statin power WRT LDL cholesterol (and also lower Lp(a)). This would seem to address all of my issues, but of course the financial issue is there -- from what I hear, no insurance wants to pay for PCSK9 inhibitors.

There is PROBABLY a genetic component here -- my father became a type 2 diabetic in his early 60s, and my sister (who eats very well and runs marathons) regularly has FBG between 105-115.

Agian -- you are on a PCSK9 inhibitor. How did you get on one? Docs in the states pooh-pooh the very idea of TRYING to get on one -- "That's not indicated here."

For that matter, how much did your blood sugar rise when you started niacin? Did it eventually go down again?

This attempt to lower my Lp(a) makes me feel like I'm trapped between a rock and a hard place. Want to bang my head against a wall -- 50+ pound weight loss should have done SOMETHING to lower FBG. SOMETHING.
 

cldlhd

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My situation doesn't really relate to yours as my cholesterol and lipids were never considered high but there were a couple of tests that were borderline and with the desire for even lower levels these days my cardio was pushing a statin , which seems to be de riguer. She wanted simvastatin but we settled on pravastatin . Part of the reason is the lower likelihood of diabetes. It was never a big concern but I figure why ask for it.
 

Nocturne

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The problem with Pravastatin is that it is not as powerful as Crestor.

With the high dose Crestor, my LDL is 77, which is still a little higher than is ideal considering the condition my heart is in.

This morning the doc who put my on the niacin responded to an email and basically told me that statins don't give you diabetes, and that I am heading for diabetes on my own without the statin. It sounded like he was saying I might as well just accept diabetes an inevitable.

I don't have words for how I feel right now. When all this mess started, and my FBG was 94, I thought that AT LEAST I had managed to dodge some kind of a bullet by finding out my blood sugar was drifting a bit high and then losing 25% of my body mass. But it looks like I can't catch a break there either. What the Hell?

Throwing diabetes on the donkey's back increases my odds of severe cardiac event by about 50%, according to the MESA study. Bad to worse. What am I supposed to do?
 

Agian

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A lot of the cad reversal studies use Atorvastatin. I switched to this from Crestor.
Yes, the Niacin can increase bsl, but it didn't with me.
I pay for the Repatha out of pocket.
Your results indicate pre diabetes, not the full monty. Could be the Niacin.
Metformin might be an option.
Are you still overweight?
The lower the better; I'm still a chubber, so I have a lot of work to do.
 

Agian

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PS, are you eating a lot of carbs?
I notice stress increases my sugars, quite significantly.

Diabetes was non-existent in our indigenous population, now it's prevalent, because of diet and lifestyle. Our way of life sucks Noc.
 

Nocturne

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I can't decide -- is it better to stick with the niacin and risk giving myself diabetes, or drop the niacin and accept stratospheric Lp(a) levels? Which poison?
 

Nocturne

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I love all online advice about reducing odds of getting diabetes -- lose weight, exercise more, eliminate these twelve foods (all of which I eliminated from my diet over a year ago)! Did all that, rocketed right into prediabetes. Bullshit!
 

Agian

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What 12 bloody foods?
Weight loss is essential in preventing diabetes.
if you want to see if it's the Niacin, stop it and re-check. If it normalises, there's your cause.
 

pellicle

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Nocturne;n880405 said:
I love all online advice about reducing odds of getting diabetes -- lose weight, exercise more, eliminate these twelve foods (all of which I eliminated from my diet over a year ago)! Did all that, rocketed right into prediabetes. Bullshit!

you're absolutely right ... its all bullshit ... pig out on Mackers, potato chips and sugary foods, drink 2 or 3L of Diet Pepsi a day, do not exersize and avoid unprocessed foods ... that's your best bet
 

Agian

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Nocturne;n880405 said:
I love all online advice about reducing odds of getting diabetes -- lose weight, exercise more, eliminate these twelve foods (all of which I eliminated from my diet over a year ago)! Did all that, rocketed right into prediabetes. Bullshit!
Noc, I looked it up online. The sites mention 11 foods you need to avoid to prevent diabetes. What's number 12?
 

pellicle

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Nocturne;n880405 said:
rocketed right into prediabetes.
until now I had not realised that Burnie Taupin wrote this for you
[video=youtube;-LX7WrHCaUA]https://www.youtube.com/watch?v=-LX7WrHCaUA[/video]

its a song for you...
 

Nocturne

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Agian;n880409 said:
Noc, I looked it up online. The sites mention 11 foods you need to avoid to prevent diabetes. What's number 12?

Not knowing the other 11 you saw, I have no idea. It was just one of those diabetes prevention/treatment sites. My point is I did all this work and not only was there no payoff in terms of blood sugar (which I had just assumed there would be), but things got markedly worse.

How do you lose a quarter of your body mass and have your blood sugar go UP? Is that what you would expect to happen?

You are missing a longish post that got flagged for moderator acceptance because I added a YouTube clip. Not sure if that is obfuscating things. Though as I recall it was mostly just me freaking out. I'm freaked out. I just lost a piece of solace and now I have something else to worry about. My sis got gestational pre diabetes and it changed her profoundly - she lost weight, started running, ate better, etc. I was changed profoundly (mostly due to terror) when my testosterone tanked and started causing horrible issues - enough that I lost 60 pounds, started exercising, radically altered diet, etc. And that was before AVS, and premature CAD, and mutant levels of an untreatable (doctor's words) blood factor from a pair of mutant genes that threaten the health and lives of me and all my kids. Pick ONE of those things and it'd be enough to rattle someone enough to change who they are. And all this in the span of a couple of years.

I don't have much headspace left to be ME anymore. You know, I recently had sinus surgery - which in retrospect I should have had done twenty years ago, it actually fixed some breathing issues I'd had since childhood, I can blow my nose now and and stuff comes out and I can breathe better - it's like heaven. But I digress. While I was recovering they put me on OxyContin. I ad not realized that one of the effects of that drug was that you just stop worrying about things. For a few days I had all of my headspace back, to think about what *I* wanted to think about. And it was incredible and sad at the same time because I realized that that was just a normal day for me three years ago. And I understood why people get hooked on those pills.

I don't know why I even wrote this here. I thought maybe Agian could offer some advice on countering the niacin blood sugar rise, or how to actually get my hands on a PCSK9 inhibitor (they are over $14000 per year here in the states - are you paying that much out of pocket, Agian?). I should have expected it would just be pooh poohed and downplayed as a joke. "Don't worry about it" with the subtext that none of my fear, sadness, and anger is valid, You know what? I think I just want someone to say, "I'm sorry this **** on your cake." I think that's all you CAN say, here.
 

Paleowoman

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Nocturne;n880411 said:
How do you lose a quarter of your body mass and have your blood sugar go UP? Is that what you would expect to happen?
Hi Nocturne - I know you're upset about your blood glucose levels going up when you have lost weight, but the answer to your question is actually quite simple, though hard to hear: even if you lose weight, if you eat carbs, even complex, so called 'healthy', carbs, your blood sugar levels can go up if you have a predisposition to develop diabetes.

To avoid diabetes you are going to have to cut right back on carbs. Believe me, I am a very lean person who has always been lean but I have diabetes. It is controlled well by cutting right back on carbs - the only carbs I eat are very low ones, that is lots of green veggies, you don't have to eat salad, but the whole array of green veggies. Plus nuts in moderation that are lower carb such as almonds and macadamia nuts. Make the rest of your food real food, nothing processed, cook yourself meat, fish, eggs, have cheese. Cut all the other carbs for the moment, cut out all the bread, pasta, rice, lentils, fruit, starchy veg. Do it as an experiment and then have another check. If you still have high fasting blood glucose then it might mean you are insulin resistant and you might find metformin helpful.
 

pellicle

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Dude, have you considered that losing mass is just one indicator. Not THE indicator.


​​​​​​Factor in that metabolic changes may lag metrics. May take years to catch up with years of pressure the wrong way?

This is not a short game but a long one, so play the long game.

Also, have you worked out this is a forum about heart valves and valve related issues?
 

LondonAndy

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pellicle;n880414 said:
Also, have you worked out this is a forum about heart valves and valve related issues?

I think it is reasonable to ask a question on diabetes here. 20 years ago I was diagnosed as a type 1 diabetic, ie Insulin dependent, and also because of a history of cardiac issues on the male side of our family that have resulted in deaths of men in their 30s and 40s, I have been on a statin for even longer. Despite good blood glucose levels and cholesterol level in the normal range, when I ended up with severe aortic stenosis that resulted in having a replacement valve fitted, the surgeon said there is now evidence to suggest the combination of a statin and insulin causes increased calcification. So much of our health issues can be inter-related.

Incidentally, on PCSK9 inhibitors: I was one of the 28,000 people on the Fourier clinical trial of Amgen's version, and when it finished I discovered that I was on the actual drug, not a placebo. The verdict seemed to be that they can be extremely effective (my overall cholesterol level fell to 2.something), they are very expensive at about £8,000 per year (US$10,670) and here in the UK they are proposing to use for those who are not able to tolerate statins only.
 
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pellicle

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LondonAndy;n880419 said:
I think it is reasonable to ask a question on diabetes here.

agreed, but have you noted that the history of Nocturn here is not actually about valves (which is what we mostly have experience in) but about all manner of other health issues? Its not "a question" its a primary focus.

My point is not to say "lets keep this strict" (god forbid) but perhaps that Noct could / should broaden his horizons and look to specific groups who may likely have much more specifically relevant experience and knowledge.

Not to mention how frustrating it is that he's always morbidly negative, disses what is said (without any significant backup) and agressively (occasionally rudely) rejects any attempt to console him. ... I mean I get it, because I felt that way in the weeks in hospital around my debriedments. I wanted truth and sought it and was less willing to accept "you'll be right mate" answers. But finding "truth" requires rigor and dedication because its specific to you and often osbscure.

In my case I'm still seeking truth, but its by investigation and rigorous analysis of the outcomes of those investigations.

Still, I'm glad you wrote what you did because its elicited an important clarification
 

Nocturne

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Pellicle, forgive me. I had thought that this was a forum for ALL people with AVS, regardless of cause. I had not realized that people who get AVS due to extremely high Lp(a) levels, rather than the more commonly known and understood causes, were excluded.

FYI, I frequent no less than three other forums, each specializing in a different facet of what I'm dealing with. I will say that the GENERAL attitude on the others is noticeably less acerbic than what I see here, though it's possible that this is due to a small number of vocal personalities.

I am sorry that my complex medical situation inconveniences you.
 

pellicle

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Nocturne;n880421 said:
I am sorry that my complex medical situation inconveniences you.

It doesn't, read my above reply to Andy, for the details.

Glad that I haven't dented your enthusiasm.

In no way attempting to doge this apt description of me, I hope you were looking in the mirror when you wrote:
though it's possible that this is due to a small number of vocal personalities.

I mean having slammed Agian a few times, (happy rainbows anyone?) and then specifically calling on his help.

Perhaps you could be less vitriolic ? People ask things of me here and I often comply ...
 

Nocturne

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Paleowoman;n880413 said:
Hi Nocturne - I know you're upset about your blood glucose levels going up when you have lost weight, but the answer to your question is actually quite simple, though hard to hear: even if you lose weight, if you eat carbs, even complex, so called 'healthy', carbs, your blood sugar levels can go up if you have a predisposition to develop diabetes.

To avoid diabetes you are going to have to cut right back on carbs. Believe me, I am a very lean person who has always been lean but I have diabetes. It is controlled well by cutting right back on carbs - the only carbs I eat are very low ones, that is lots of green veggies, you don't have to eat salad, but the whole array of green veggies. Plus nuts in moderation that are lower carb such as almonds and macadamia nuts. Make the rest of your food real food, nothing processed, cook yourself meat, fish, eggs, have cheese. Cut all the other carbs for the moment, cut out all the bread, pasta, rice, lentils, fruit, starchy veg. Do it as an experiment and then have another check. If you still have high fasting blood glucose then it might mean you are insulin resistant and you might find metformin helpful.

Thanks, Paleowoman. I have heard what you are saying about carbs, but I have also heard that due to my high CAC score I should be avoiding all meat and oils (including nuts) as per the Esselstyn diet. That seems to leave me with little more than sunshine and leaves. It might well be the SAFEST diet for me, but I wonder how many years it would really buy me and how worth the sacrifice they would be. But I think you have a valid point that is worth considering.

Here is my plan to tackle this:

1. I'm going to stop taking the niacin and get myself a glucosometer. We used to have one in the house for my wife's mother but apparently it got lost.

2. I'll monitor my FBG for a week or two (it will hopefully begin to drift down without the niacin) and see where it stabilizes. It SHOULD stabilize around 102-105, which is where it was before I started taking niacin a month or two ago.

3. I may stop taking the statin for a while on top of that, and similarly monitor FBG without it. Actually I almost certainly WILL do this, as I really want to see what my FBG really is without any pharma interference. I've seen online posts from people who claim their FBG has risen 20 or 30 points from Crestor, and I am on a fairly high dose of 20 mg per day. I know I shouldn't skip the statin for long but I was just ordered to do it for over a week when I had my surgery and nothing happened. At this stage of the game my risk of heart event is relatively small (under 10% for this decade), and if my calculations using the MESA data are correct the statin is only lowering my odds by 1% over the decade anyway. And, honestly, it would do me good psychologically to see that I really got it down to, say, 80ish prior to statin use.

4. I'll use the gathered data to make some decisions. It may be that the niacin and statin aren't raising FBG at all, in which case I might as well go back on both of them. More likely, they are raising it, and I'll have to weigh the benefits of taking one or the other or both against the reality of being smack dab in the middle of prediabetes (and your advice on diet may well come into play as well).

I think the glucometer will give me more agency over my own condition, which is something that I think I really need. I may try cutting out carbs for a week and see where that goes. Regardless of the outcome, it'll let me tinker and see what MY body responds to best.

I firmly believe that I will ultimately need a statin. But I wonder if a different statin might affect my FBG less, or (and this is key, I think) if taking a current statin (or the niacin) RIGHT NOW would be worth the risk of pushing closer to diabetes when I could simply wait several years for a better alternative. This is especially relevant WRT the niacin, as a very effective drug to lower Lp(a) is in phase 3 trials right now in the USA, and could be available in the next five years. The wait is not ideal as there is some evidence that Lp(a) speeds the progression of AVS, and I seem to be a fast progressor (going from "very mild" stenosis to "mild bordering moderate" stenosis in one year); but I really, REALLY do not want diabetes added into the mix here if at all possible.

It's possible that dropping both the statin and the niacin and waiting a decade for better alternatives to present themselves may be the best decision I could make. Then again, the statin did get my cholesterol numbers in great shape, with LDL lower than 70, etc. On the other hand, I wonder how vital it is to get my numbers that low this decade (it WILL eventually be important -- for example, running my probable numbers giving a standard CAC progression through the MESA risk calculator indicates a 3% chance of the statin making a difference in my years between ages 55 and 65).

I realize that my Lp(a) issues may not be what some of you are used to seeing in the context of AVS, but trust me -- you are going to see more people like me in the future. This is a real cause of AVS and that fact, while fairly obscure for now, will not remain so forever. And high Lp(a) causes a lot of other problems too. In short, if you live long enough, you are going to see others in the same boat I'm in. You probably already have, they just didn't know it.
 

Nocturne

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LondonAndy;n880419 said:
Incidentally, on PCSK9 inhibitors: I was one of the 28,000 people on the Fourier clinical trial of Amgen's version, and when it finished I discovered that I was on the actual drug, not a placebo. The verdict seemed to be that they can be extremely effective (my overall cholesterol level fell to 2.something), they are very expensive at about £8,000 per year (US$10,670) and here in the UK they are proposing to use for those who are not able to tolerate statins only.

Very interesting, Andy! The quotes I'm seeing on PCSK9 inhibitors here in the USA are $14,000 per year, which is significantly more than you're seeing in the UK and seems pretty typical for the markup on pharma we usually get here in the states. I am still curious how much Agian is paying out of pocket in his country. The docs I've asked about getting on PCSK9 inhibitors here have all basically shrugged and told me it was "not indicated". Very frustrating to see a likely solution to some of your issues right on the other side of a glass wall!
 

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