Maybe I am an idiot

65 yrs with type 1. At the 50 yr anniversary I suddenly needed two heart stents. Now at the 65th year I apparently need stents in my legs. I urine tested for the first 22 yrs of having diabetes. I never stopped taking insulin but I did my share of eating donuts and desserts and really anything I wanted to eat. My doctor told me that testing negative once a day was enough.

Around thirty I had a new endocrinologist and she introduced me to at home blood testing and I had my first A1c which was 10. I quickly brought that down to under 7 and was in the 4’s when pregnant. I continued to be under 7 for several years. About 20 yrs ago I started following the Bernstein way of eating and stayed on that diet for 11 yrs. During that time I suddenly needed 2 heart stents. The last 8 yrs I have eaten a vegan low fat fruit and vegetable diet. My Alc’s are still in the 4’s and my TIR is good as are the other readings. I am trying to get into the 5’s, but am having difficulty getting my glucose levels to rise.

My heart is in very good shape. I exercise, I m not overweight, I eat the diet the cardiologists recommend, and I have never smoked. The only thing I don’t do is take a statin because they give me neuropathy. Maybe a statin would have saved me from needing stents in my legs. I don’t know.

I never dreamed that this would happen to me. PAD was the least of my worries. My feet have always looked good, smooth, never any sores, and their color is good and my feet are usually warm. But now I have a leg that is cramping when I exercise and there is no pulse in my right foot.

Have I done something wrong? Would statin have saved me from this? I am just really mad, and sad to be facing this at 73.

I also wish that my cardiologist would call and connect me with a vascular surgeon he used to work with. I would like to have this surgery as soon as possible.

Thanks if you read this, I needed to vent. If you have any ideas I would love to hear them.

Marilyn
Type 1 dx 1959

My feet have always looked great, they are pink, and usually warm, but my right foot has no pulse.

5 Likes

@Marilyn6, don’t beat yourself up. You have been doing everything according to what you have been told. What we are not being told is that insulin and diet and exercise are not the only things we need. We also need the other hormones that the healthy pancreas makes. We are not told and they are not available to us. C-peptide is one. C-peptide is not there to show health practitioners how much or how little insulin our bodies make. It is there to keep capillaries healthy… capillaries in our eyes and our kidneys. Other hormones do other things. You can look them up if interested. Statins would have only given you other problems. Look at the positives… you are in your 70s. Insulin has kept you alive for many, many years. Your A1cs show that you have been doing your best. That as good as it gets.

2 Likes

I wish I had some ideas to give but all I can say is that you really are one of the people on the forum that I look to for excellent advice and experience. I think you are doing everything right - healthy diet, daily exercise, and healthy lifestyle in general. I think we can just be unlucky sometimes so I don’t think you are to blame at all. I wish you luck with your treatment. And I hope your cardiologist connects you to a good surgeon.

This is a good point. I had not thought of this before and in fact didn’t know what C-peptide was for! Sounds like it is really key to maintaining health. I wonder why there hasn’t been any research into this or if there has been, why no treatments!

3 Likes

Willow, my eyes and kidneys are fine. The test with dye that I had on Wednesday, showed that much of my body including kidneys, pancreas, liver etc look normal so that is good.

Maybe I am stubborn but I am not ready to get sick and die at 73. Both of my parents lived until they were 89, and I am hopeful that I can come close to their ages.

We often talk about heart attacks, strokes, kidney failure, and of course blindness, but I didn’t know enough about PAD. I was able to clear up my heart anrteries and my carotid arteries look good, I just wasn’t even aware really that my legs could be affected, although I had heard of it.

1 Like

Thanks so much Trying!

1 Like

I didn’t mean to imply that a lack of c-peptide caused your need for stents. It was just an example of a hormone that is not being replenished and what it does. And there are several other.

2 Likes

Maybe this is a silly suggestion (I don’t have any knowledge of PAD) but have you seen a chiropractor? A lot of what they do results in better blood flow and they are usually a wealth of knowledge when it comes to pain and ways to treat it.

2 Likes

Has your cardiologist checked your heart’s electrical system, not just how effective your heart is pumping blood? I am a very active senior, bike riding, 30 miles daily, xc skiing, etc, and I was having trouble with weakness in my legs and cramping. Went to many doctors, for many years, no diagnosis. New cardiologgist. Diagnosis. Got a transcatheter pacemaker inserted directly into my heart and no weakness, no cramping, any more. You have been very thorough in your pursuit of a diagnosis, so I suspect you have checked this out, but in case you haven’t…

1 Like

Thanks for the suggestion Susan. My cardiologist has an electrical problem with his heart and he is treating my husband for a fairly severe electrical problem.

My body’s main issue is atherosclerosis from being a type 1 and because of eating a diet for 11 years which consisted of a great deal of saturated fat. This way of eating works beautifully for some of us, but it nearly killed me. I have spent the last 8 yrs trying to reverse the atherosclerosis in my heart arteries and my heart for the first time looked really good. I received 2 heart stents 14 yrs ago. My carotid arteries look good too.

Unfortunately I still have lots of plaque in my legs. I need to exercise as much as you do! I have ridden my exercise bike for all of those years for 30-60 minutes daily, and I walk around my house or dance, but that is about it. We have several other pieces of exercise equipment and I need to use them.

Thanks Susan!

1 Like

PAD stands for Peripheral Artery Disease. I have too much plaque in my legs to let the blood flow the way it should. Until the plaque is taken care of, I will have problems with my legs. This is what can eventually lead to amputation. Talking with a vascular surgeon will be very helpful I hope!

I have seen 7 chiropractors over the years, and there was only one who helped me at all with a different problem. Unfortunately he no longer lives here. He was an extraordinary chiropractor.

Thanks for the idea Firenza

I really don’t believe in statins; especially for diabetics because they can cause neuropathy. I now have Autonomic Neuropathy probably from diabetes, but I was on a statin in the past.
I recommend herbal cholesterol and heart medicines. And I don’t mean Red Yeast Rice, because that is a statin. Diet and exercise are of course also important.

I take CholestOff and Omega-3-Acid Ethyl Esters 4 grams daily.
They have brought my LDL down to 80. My vegan low fat diet also helps. My LDL was 199 when I had to get heart stents. My HDL was very high and my triglycerides were very low and remain low.

I am certain that my neuropathy was caused by 2 different statins. I will never take another statin. My husband takes a statin with absolutely no problem.

I am sorry that you are also dealing with neuropathy. I am thankful that mine is minimal most of the time.

2 Likes

@Marilyn6 - I know exactly how you feel, questioning everything you’ve done to maintain normal blood sugars only to be told this. I felt the same way.
I can share with you that PAD is a long way away from critical limb ischemia, which is a severe blockage of arteries in the lower extremities. That’s what I was diagnosed with late fall ‘23.
Like you, I’ve had T1D a long time (59 years) and with the exception of the early years my control has been excellent. Unfortunately, many elderly people develop severe calcification of their arterial system as we age (non diabetics included). Diabetics are especially prone to this:
Arterial calcification in diabetes - PubMed.

The good news is a vascular surgeon can have you fixed like new, usually with either balloon angioplasty and/or stents. They couldn’t use stents in my blockages, but were able to open all but one artery with angioplasty. Blood flow has improved dramatically, I’m not going to lose my lower legs and I have vascular ultrasounds every 6-8 weeks.

I should mention calcification has nothing to do with diet - my Lipids are poster-boy perfect (including my APO B100 and Lp(a).

The future is bright Marilyn, just get yourself to a vascular surgeon ASAP.

3 Likes

Jimi63, it sounds like 2023 was an extremely difficult year for you to say the least. It is terribly disappointing to work so hard at keeping complications at bay only to end up with serious problems. I am so sorry to hear about how much you have had to go through.

I haven’t had continuously high glucose levels in 40 yrs. It is hard for me to comprehend that those early years could have caused the problems I am having with atherosclerosis now. It certainly doesn’t run in my family, so I guess it has to be because of my diabetes. I will continue to eat a low fat diet just because everything I read about atherosclerosis says to limit saturated fat. I know that my diet has something to do with my improved heart arteries.

I have calmed down a good deal and fully expect to get through this in a few months. I just wasn’t prepared for this interruption in my life with diabetes. Hopefully I will hear from a vascular surgeon in the coming week. I am glad to hear that you and your doctor are keeping such a close watch on your legs.

Have you had any problems with your arms or hands? My fingers fall asleep periodically and that worries me. I will mention it to the vascular surgeon.

@Marilyn6 Definitely having fingers fall asleep, especially at night. My neurologist assured me that’s likely caused by pinched nerves, and isn’t abnormal for aging Grey Haired oldsters like us :blush:

If you roll over and move your fingers for a couple of minutes all feeling should return.

Thanks Jimi for the hand report! I have trouble remembering that we are old. Many people do not make it to our ages.

3 Likes

Marilyn,
You are to be congratulated on your excellent management of T1D over all these years. It’s 56 years for me and I well remember the urine tests. (Does Benedict’s test, boiled on the stove and supposedly superior to Clinitest, ring a bell?)
Like you, I have foregone statins as I have good cholesterol numbers and am just not inclined to take them.
My feet are just fine, but sometimes I get numbness in my fingers - the opposite of what seems to be expected.
No expertise with stents, I’m afraid - just encouragement and good wishes,
Sue

2 Likes

Thanks so much for your kind words Sue_R. It certainly sounds like you have done well too.
I made an appointment with a vascular surgeon for next month. Such a surprise that I am having problems with circulation!

I only remember testing with Clinitest. I can still see it, smell it and hear it all of these years later. You might want to ask your physician about the numbness in your fingers. It might just be from getting older, but I am going to ask the vascular surgeon about my fingers turning numb.

Take care,
Marilyn

About numb fingers… I broke my wrist 2 years ago. After the wrist was healed and the cast removed, my thumb and fingers became numb. I attributed it to the break. The orthopedic doctor agreed. Did a quick carpal tunnel surgery and, lo and behold, no more numbness. He also made an observation that the nerves he saw during surgery seemed quite withered. I was 81 years old at the time. It may be that years of using our hands puts wear and tear on the nerves that go through the carpal tunnel. I would certainly look into it. The surgery is no big deal.

1 Like

I had carpel tunnel surgery on my left hand decades ago, but it is the fingers of my left hand that become numb once in a while. You may be right, thanks!

Correcting this to say that both of my hands have fingers that are turning somewhat numb.