Confused

Type 1 and LADA
61

Yes, you have contributed to my worries, but I am extremely glad that you told me about this study. I have a call in with my cardiologist now. I did notice that the study was done on people taking plants sterols and statins, but I don’t know if eliminating the statins from the study would make a difference in the outcome.

Heart stents is not the only reason I stopped the Bernstein diet. I stayed on it until I couldn’t take the migraines and the passing out from low blood pressure anymore. I had to go to emergency or call an ambulance several times, because I kept landing on my head. I would pass out before I had a chance to sit, because I had no warning. I was also beginning to gain weight. My great A1c wasn’t enough to keep me on a diet which was so badly damaging my body.

In the past 5 yrs on the low fat plant based diet. I have had one migraine and I started to pass out once. I lost weight too and got back down to my usual 105. I also gained more energy. My A1c has remained quite low and my TIR is really good.

I have had my particles tested several times and most are the large and fluffy kind.
I have also read that having a high HDL number might not be that protective. Mine was 100 when I needed stents.

My present cardiologist is very good. I have seen about 8 in the last 11 yrs. Every one of them has wanted low LDL numbers. I made the mistake of following a very popular author’s advice who didn’t agree with doctors who said eating foods containing cholesterol and having high LDL numbers was a bad thing. I wish that I hadn’t listened to him. Instead I ignored my high LDL number because my HDL was very high and my triglycerides were in the 30’s. Some of the cardiologists who were quoted in this book have since said that they were misquoted, and that they didn’t agree with the author.

I am very glad that your calcium score was O. I recently asked my cardiologist why he hasn’t done a calcium test on me, and he said that he only uses that test to see if someone needs to take statins. He believes that once a person has been diagnosed with arteriosclerosis, a calcium score isn’t really accurate because the test can’t see blockages. All it can do is tell you if you have too much calcium. He thinks that other tests offer much more useful information.

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Sooo my cardiologist says that he recommends that I stay on Cholestoff, although he says that it could be causing the retinopathy. I feel like I am being given the choice of having a stroke or heart attack or losing my eyesight. I have an appointment with my ophthalmologist in about 10 days and I will talk to him about it.

I suppose I can just keep having laser treatments. Too bad statins give me neuropathy. I know that I definitely can’t deal with more neuropathy.

Growing older is certainly not easy for this life long diabetic.

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63

Well crap I’ve been taking cholestoff for 3 months. And it works. I can’t take statins either.
You know I also have low blood pressure. I wonder if it’s all connected.
I’ve never had any retinopathy.

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I was going to contact you Timothy if you didn’t comment today. I have only been taking Cholestoff for about 1 1/2 to 2 yrs, and don’t know what to do. The Mayo suggests taking it as an alternative to statins. They also mention a couple of other things which I will look into today.

I am on a BP med to keep my blood pressure down. It would only suddenly drop when I was eating 30 carbs a day.

65

Thanks for thinking of me.
I am a little surprised since you are nearly vegan that your lipids aren’t super low. I always assumed that a vegan diet would bring it all down. I have been moving in that direction.
I have a hard time getting protein though. I am allergic to fish.

Seems like every good thing has a negative side effect.

I get to choose if I want to be blind or atherosclerosis.

66

Most folks on a low fat plant based diet, do have normal blood pressure, and a better lipid profile than I do. My triglycerides are very low, my HDL isn’t bad, but my LDL isn’t great. About 90 I believe with Cholestoff. It was about 110 without Cholestoff. I also exercise an hr a day. I think my need for blood pressure meds, and a statin must be genetic.

I eat a great deal of legumes. My protein levels are higher than when I was eating a lot of eggs, cheese and meat. I also use pumpkin seed kernels.

I know, I feel like I can either go blind or have a stroke or a heart attack. We really can’t think like that.

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Tim, I spoke to my ophthalmologist today and will send him the study. I noticed that this study does focus on statin users, which we are not.

The ophthalmologist agreed that it would be much better to have retinopathy than be
dead. (His words) He said that the eyes can undergo many, many laser treatments while still providing good vision.

Unless he says something different after reading the study, I am going to continue with the Cholestoff.

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Is there a reason why you would keep doing laser vs injections? Laser does work by damaging the retina, whereas injections don’t and may have longer term protective benefits (and reduce macular swelling if present as well as retinopathy). I had to get some laser done for my retinopathy initially, but then switched to injections, which I now get every 3-8 months or so, depending on how things are going. Also, while not fun, way less uncomfortable (and over much faster) than laser. Injections do have their own risks, but for me, they are clearly the preferable choice for maintenance.

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The doctor would have used a needle if I had macular edema, but since I didn’t, he used a laser. I assume that he will use an injection if he feels I need it.

I have a real fear of needles, except for the ones I use many times a day. I realize that it is an irrational fear, but a shot in the eye sounds barbaric to me. Silly I know.

How long have you been getting treatment? Is your vision still good?

Thanks for letting me know about your eyes, and the treatment you are getting.

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I don’t mind any needles except IN MY EYE!
I would categorize that as a rational and reasonable fear.

Cross your heart and hope to die, wasn’t enough, but stick a needle in your eye, that keeps you from breaking a promise.

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71

I’ve had eye injections twice now. It’s no joke, even the second time I was so anxious. But there’s very little pain at all. In fact, the only pain is from the first injection of a local anesthetic next to the eye, not in it, and even that is pretty minor because of all the numbing drops they give first.

The actual injection into the eye is just freaky and unsettling, but no pain whatsoever. Having no feeling makes it seem weirdly surreal, like an out-of-body experience (or at least tv portrayals of one). You kinda hear the thump of the puncture and you can see the fluid being injected, but by this point there’s no physical sensation whatsoever, which makes me question if I’m even experiencing this… Hence the “unsettling”. I’m hoping this knowledge equates to less anxiety for the next ones!

The worst part for me is that I get a tension headache, because he makes me look to the extreme left, right, up, and down… Which is ridiculously difficult and takes a lot of muscle strain when you can’t feel your face. And it’s a total battle of muscle and will, fighting natural instincts, to look where he’s telling me and not at all the various tools that are coming at my eyes. And then there’s a 3.5 hour drive home afterwards with dilated eyes and a headache, which equals motion sickness. I imagine all that would still happen with the laser treatments, though, so the worst is a washout between the two.

The big benefit of injections over lasers is that there’s no eye-patches/blinding while you’re healing. The only blinding is voluntary while your eyes are dilated and you’re avoiding light.

My doctor is treating the injections as a stepping stone to the laser surgery, though. I had an appointment to get the laser treatments started, but coincidentally had a massive bleed right before the appointment. He thinks that the laser is the permanent (barring new damage) solution to halt the progression of retinopathy and even possibly rewind it, but he needs a blank canvas to work on. He can’t properly attack the retinopathy if he can’t see it clearly. So the injections are a temporary stop fix to prevent further damage/bleeding until the existing blood stains clear out.

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72

Ok Robyn, now you are telling me that there are TWO SHOTS!?? I might have made it through one, but two?! What a horrible thought.

As always you have given a great explanation, and I so appreciate that, I think….

Man, I am a chicken. I didn’t find the laser treatments too bad. Luckily the bright lights and having to look way to the left, right, down and up didn’t really bother me. I am too scared to be tempted to look anywhere other than where the doctor tells me to look during the procedure. The numbing drops kept me from feeling too much.

I didn’t get a tension headache thank goodness, and I didn’t have to drive home with a dilated eye, since my husband drove.
Your drive after treatment sounds awful.

I didn’t get a patch or dark glasses. I had my sunglasses with me, so I was sure to wear those.

I sure don’t have much patience dealing with the blood, but I am sure it will absorb eventually.

I think this was a fairly big bleed, so that is why he must have gone directly to laser treatments.

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You cannot see the needle, which is a key thing to know. The idea completely freaked me out as well, but wasn’t that bad and was honestly much more tolerable than a session of laser. Also mine does NOT have two injections–the numbing is done with drops, not a shot! And the numbing only affects my eye surface really, so I can feel a bit of pressure/discomfort with the injection, kind of a pinch, but it’s really not that bad, and again, the laser zaps are way worse.

Laser will permanently damage your vision, even if only a little bit at a time. As a result of the laser I had, I have lost some peripheral vision, and my night vision (which is mostly peripheral because that’s where low light vision occurs) is not as good as it was before. Injections do not cause any damage to vision. To me, that makes injections the clear winner in terms of treatment if both are seen as equally viable by your doctor. I did clearly need some laser to begin with, but once it was reasonable to switch to injections, I did and will stick with them over more laser as long as it remains reasonable.

My vision is overall still good, and correctable to close to 20/20. I occasionally get minor bleeds (basically, an indicator we have waited a little too long between injections, but easily solved by going in for one), so at times I have some bits of clouding which quickly turns into just little bits of dried blood which looks like little particles floating around but mostly settled toward the bottom, which eventually disappear. Nothing like the intense clouding that happened with the initial vitreous hemorrhage which is how mine was initially caught about 5 or 6 years ago.

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74

More good information and I like that drops can still be used to numb the eye.

When I see my doctor next week, I will ask about injections compared to laser treatments.

You and Robyn have shared some great information about your experiences. I am very thankful.

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75

Good luck! Much as this sucks to deal with on top of everything else, and I was very upset when first dealing with it too, it has become a very manageable chronic thing I take care of that is relatively low down on my list of health concerns at this point. I think you will be just fine!

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76

Ha! I believe that’s what I said, verbatim, when I found out too, as I was looking at the tip of the first needle. Except I threw in a “that’s a dirty trick!” on top of it.

It’s clear that @cardamom and I have had very different experiences. I suspect this might be because we’re getting different drugs injected. Likewise, this thread has been terrifying for me! This is the first I’ve ever heard of lasers damaging vision when my doctor speaks so excitedly of them and about how far treatments have progressed and all the good he can do with them now. Never once a word about causing vision loss… Now I have questions!

I’m not getting the Eylea injections, which are approved to be a substitute for laser surgery. I’m getting Avastin injections. It’s actually a cancer treatment that works by starving tumors of blood, and they realized that it works amazingly well for eye bleeds, too … with virtually no side effects whatsoever, besides the infinitesimally small risk of infection from the injection itself and/or poor aftercare… Which is easily avoided with due diligence and caution. It’s a short term solution for cleaning my vision so my doctor can perform the best laser surgery possible. It’s not really an option for me to choose one over the other. The injections are just pre-op preparation.

I’ve never had the lasering done yet, this is all new to me, but I do know that in my ignorance I wouldn’t choose the injections over the laser. We originally scheduled 2 injection appointments, six weeks apart. It wasn’t until after the 2nd round was done that he talked about scheduling the next one. I was heartbroken. I thought the next appointment would be the lasers. He’s very meticulous and a complete perfectionist (which I highly value when it comes to probing my eyes!), though, and won’t move onto the lasering until the field is clear of blood.

I do know that I appreciate the first local injection, though. I get tons of numbing drops, but the local anesthetic is long-acting and takes 2-3 days to fully wear off. I suspect that the Avastin is much thicker/viscous than the Eylea and requires a larger bore needle. I can totally see the needle, and I can see the thick glob if goop sitting in my eyeball. It looks like an ink stain for a while, but starts to dissipate after 12 hours or so. By 24 hours I really can’t see the ink stain at all, but my eyes start to have a dull throbbing ache… Which is when I really appreciate that lingering local.

My original point still remains, though, that the injections if you ever come to them don’t need to be feared. The terror is all in our heads and in our perception. The actual physical experience is not pleasant, but neither is it unpleasant. It’s just a mind[explicative]. (Sorry that’s the most PC way I can think to say it.)

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Nope, this has been for Avastin most of the time. I only very recently got an Eyelea injection. Neither has had injected anesthetic. I think it’s just differences in how our doctors approach it.

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78

My mistake. Sounds like it is. I wonder why the differences, then.

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Not easy for any of us, Stay Strong!

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80

Medical practitioners just have different approaches, opinions, and preferences! Sometimes it reflects differences in their own training, sometimes it’s just what they end up feeling comfortable with, etc. I’ve seen two different doctors for Avastin injections, in the same practice, and while neither did an anesthetic shot, they had various other differences–one used a device to hold my eyelids open and one just had me hold my eye open and look up. I prefer the latter, because turns out I dislike the device even more than the shot! They also had me in different positions for the shot (laying down vs sitting up), reflecting the simple fact that one is much taller than the other. This kind of thing is why if you’re not into how your doctor does things, it can be perfectly reasonable to get a second opinion to see what your options are.