Red flags?

Type 1 and LADA
1

I use an internist and a cardiologist. I see the cardiologist once a yr. I have been treating my own diabetes for the last 30 yrs. I give injections several times a day and use a G6 which is great when it is accurate. I also finger test my blood several times a day. I was dx in 1959 and am in very good shape.

All my internist does is check my A1c 4 times a yr and shakes his head and tells me that I have the lowest A1c he has ever seen. He doesn’t ask me why it is so low or how I achieve these numbers. I doubt that he understands TIR etc. I don’t really care, since he will give me the insulin prescriptions I need.

On my chart it says that I have had heart failure. I do have two heart stents that I received after 50 yrs of type 1 and after following the Bernstein diet for too long. My heart did not stop and the stents weren’t due to an emergency.

I explained that to him, and he said, “Well you are a diabetic, and people with diabetes die from heart failure so heart failure is accurate.”

Do you think he is accurate in saying I have heart failure?

He also said that if I was ever in the hospital, the hospitalist would figure out how much insulin I would need. I was trying to get my chart changed because it says that I take 45 units of Novolog and I actually take 9-12 units. I want the prescription to say I take a few more than 12 units because I use pens and need to expel a couple of units each time I give a shot, but no where close to 45 units. I am afraid that the hospitalist would see that and give me too much insulin.

I was seeing this doctor’s partner, but he retired. The doctor I am complaining about also helped save my husband’s life, when he recommended getting an endoscopy instead of treating him for an ulcer. Turns out my husband had esophageal cancer and catching it very early helped immensely. That is why I am conflicted about looking for a new physician.

This doctor also asked me why I am concerned about living a long life….

6 Likes
2

Medical treatment is still, however slowly changing, from being treated reactively rather than proactively. As we are an aging society, this is a very slow but needed transition. What you may want to consider is finding a concierge cardiologist to do a full workup and review your best options to suit your needs and lifestyle. On the plus side, concierge medical professionals are always working in your best interest and usually have a very good relationship with your existing medical team so it is a win-win proposition. On the negative side, their services are self-pay, and not yet covered by insurance. The tests they prescribe, however, are covered by insurance.

I recently had a full workup and it was worth every penny as I learned secrets that I have been elusively chasing for the past several years. My initial workup was $2,500 and then $2,500 for ongoing concierge service year one with subsequent years at I believe either 4,000 or $5,000. Since I self-manage my medical care as much as possible, I just took the initial workup package and passed on the ongoing concierge service.

I may or may not go for another full workup in the future if my health deteriorates and I can’t find a solution. My existing team was thrilled with this approach, so much so that one of my team members retired but said he wanted to continue to see me a couple of times a year and follow up on my results.

Hopefully, this is an additional option that may work better for you than switching doctors.

1 Like
3

I am fairly happy with my cardiologist. My heart seems to be in good shape as do my arteries. I just need a physician who seems more aware. I was recently diagnosed with osteoporosis and my doctor said nothing about it except to not take any of the medications to treat it and warned me not to fall. I had to research what to do on my own, which I guess I should be used to. I have had to do excessive reading about medical issues for my family for the last 30 yrs. I am getting tired of doing it though.

I live in a small college town in Idaho which is 2 hrs from a large town. How would I go about finding a concierge service and how would I know if they were any good? I don’t have a team who would be thrilled with this approach as they would probably think that it is overkill. I don’t really have a team.

1 Like
4

@Marilyn6, I guess I shouldn’t be surprised, but I am. I think it’s a great thing to figure out if the internist is the best fit. I don’t think it’s all that common for patients to be proactive and a vocal advocate for their own healthcare, so it sort of takes providers off guard. Plus, many are severely over extended, exhausted and spread way too thin. There seems to be a lot of anxiety in those who are left in the medical profession. I advocate for myself and my 86 year-old father, and it takes a lot of effort. You obviously know what I mean.

We, and my mom, have a great Primary, that we’ve had for ages. He still looks 14, but that’s ok. Lol. He’s very sharp and attentive. I will encourage others to actually go into their medical portal and read their records. I recently discovered a mistake in mine and PMd my Dr, who responded within about an hour and had it corrected.

I pay out of pocket for my longtime Endocrinologist, since she’s out of network for my insurance, but it’s worth it to me. She’s really on top of it and for awhile served as my primary. Now, I get my labs done at my primary where I have coverage and they are sent to her prior to my appointments. To me, I’d want an Endo, regardless of my A1C. But, everyone is different.

Have you asked your cardiologist about the CHF? I’d go by what he says. No one has told my dad that he has CHF, but it’s in his health chart. He has a primary and a cardiologist. He had a heart attack in 2000, quadruple bypass soon after and 4 stents over the years. Once he had A-fib. Still, I describe him as a heart patient. I agree that getting them to give a proper diagnosis is important, along with an explanation.

I’m glad you discovered the info on your insulin dosage. If you’re in the hospital how in the world would know they how much to give you? Based on my experience, people in the hospital don’t know much about it at all! I was in for DKA once and I’m surprised I survived. They gave me intravenous fluids and insulin for 5 days and I didn’t have a CGM back then. I had to keep finger sticking. Luckily, they weren’t aggressive with the dose.

I hope you can find the right fit with your providers. It’s so critical for us all, especially T1. I commute 2 hours roundtrip for my Endo, which is at a large teaching hospital. My primary and lab are close by. Have you considered virtual visits?

5

Strictly speaking from only a medical definition, he can say that. The term means that there is a condition in which the heart has difficulty pumping blood through the body. The stents imply that your heart would have difficulty without the intervention.

So while it may be technically correct, it is definitely not the best way of saying it. He could say something like “coronary heart disease” instead. That would be a more palatable way of saying it.

This depends on the context of the question. Is he trying to encourage you to seek a therapy that will help you, so he wants you to highlight your reasons for wanting to live? Like he wants you to mention family or grandchildren or your hobbies, or something to help you envision your reasons?

Or is he saying it in a dismissive way, like you have lived long enough, why do you want to live longer?

I don’t know his context. So that is better for you to analyze.

But if he was being dismissive of you, I’d send him packing in a second.

1 Like
6

contents removed by original author

2 Likes
7

I think you’re getting wrapped up in what the words “heart failure” sound like to lay people and missing what the actual medical definition of “heart failure” is. It certainly doesn’t help that the doc gave you really crappy explanation. I’d be mad too if someone told me a diagnosis was justified because I’m likely to die for that reason sometime down the road!

Heart failure doesn’t mean that the heart stops working altogether. It just means that it has failed to work adequately to meet your body’s needs, and medical intervention is needed. In your case , it came in the form of stents and ongoing cardiac care. Heart failure is indeed a fair chart notation in your case. It’s what justifies your cardiac care to the insurance company. It’s not a personal judgement, nor a reflection on your current state of health.

3 Likes
8

I have had to be extremely proactive for years with my health, my son’s and my husband’s. I am polite but firm with our providers.

If I had had a heart attack, I wouldn’t complain about the heart failure note, but I didn’t have one. All I needed was two stents. I will see what my cardiologist says like you suggested, thank you. I do not have congestive heart failure.

I see no need to have an endo since I do so well on my own. I did have an internist who sent me to the endocrinologist who taught her, and he said that I was fine and that there was no need to see him. My physician sent me to him because my A1c was in the 4’s and she didn’t think I was safe. I eventually left her because I was comfortable with my A1c. Now that I can find out exactly how I am doing glucose wise because of my Dexcom reports, I don’t know what an endo could tell me. If I was using a pump, I would use an endo at least until I was comfortable using the pump.

My diabetes has been easy for me to control for the most part. I have had it for 64 yrs and have never been hospitalized because of diabetes except when I was dx at 8. I have been very fortunate. My eyes, kidneys, etc are fine. I have 20/20 vision since cataract surgery. I have full feeling in my feet. Am I missing something that you think an endo could help me with?

9

No, the doctor was definitely not encouraging me to seek a therapy that could help me. I am the one who suggests treatments. I can’t remember the reason why he asked me why I want to live a long life. I can’t imagine not wanting to live a long life. I really enjoy my life! I also
want to be with my husband and son for as long as possible.

My doctor is a 7 Day Adventist who may see death as a good thing, and not something to be postponed as long as possible. We definitely do not share the same beliefs.

2 Likes
10

Thanks Robyn, that makes a lot of sense. If I had the same problem now, 12 yrs later, I don’t know if I would have received stents. I didn’t have a heart attack and the blockages weren’t in high risk locations.

11

There is more than one type of heart failure, although it sounds alarming. There is congestive heart failure from blocked arteries and fluid retention and it’s likely that is what your doctor is referencing because you had2 partially blocked arteries.
However doctors tend to want us to fit into a neat little box and very few people do.
It is very difficult to get a diagnosis changed. I had a doctor accidentally dx me with kidney failure and I have never had an abnormal urine test.
My doctor told me “ well eventually you will”. And I dropped that doctor.
The insulin dosage worries me more because if you were brought in to the hospital unconscious, and they checked in with your medical record, they very well could overdose you.

There isn’t any intervention a doctor would do seeing “ heart failure” on your record. The insulin thing is alarming though. I would officially request that it be changed to reflect your needs.

I totally get why you are annoyed, you work hard at diet and exercise and this feels like you are being mischaracterized.
I feel similarly when I’m asked again and again about my kidney function. I need to keep reminding everyone who looks at my chart, and the staff are trained to believe the chart over the patient. There are good reasons for that. Doctors are bound by your chart which is actually a legal document. So you can see why they don’t want to change it and they want to characterize you the way they want and to hell with your feelings about it.

You could get one of those services like medic alert or something where you can enter your own data into a system and change it yourself when you need to.
I don’t know if a doctor in an emergency room will pay any attention to that, but you could consider it.

I have a tattoo on my wrist that says type 1, just so paramedics won’t flood me with dextrose, but thsts just my worry. Really anything could happen when we present in the ER.

1 Like
12

Yes Timothy, I worry about being in a car accident and ending up in the hospital. I have a bracelet which says that I am a type 1, but there is so much more to it than that. Because of my diet and exercise regimen I take very little insulin,45 units would probably kill me. I am angry that my doctor said that the hospital would figure out how much insulin I would need. I doubt that they would have a clue. That might have been when my doctor asked why I wanted to live so long.

I have been considering getting a medic alert bracelet. I should since I am often driving from Idaho to Oregon. I think I will. Thanks Timothy.

I have had doctors who insist that I have to have kidney disease just because I have had diabeties for over 60 yrs. The nephrologist I saw said that my kidneys are fine. I had a cardiologist who told me 12 yrs ago, that I looked too good for having had diabetes for 50 yrs, and that soon I would go downhill. I never saw him again. I haven’t gone downhill.

3 Likes
13

This morning on a group ride, I had a conversation with a fellow rider who is a cardiologist. We discussed a bit about EKGs and their importance - that everyone should get one in their 30s for s baseline to go in their records.

The discussion moved to how much can be learned from an EKG - things like electrical abnormalities caused by scaring from an earlier heart attack.

He told me that he had a few patients with EKGs that looked like they had damage from a heart attack, but had perfectly healthy hearts. He made them laminated cards explaining this, in case they were ever hospitalized for any reason.

2 Likes
14

Sounds like a very caring and knowledgeable cardiologist.

2 Likes
15

I would say because he’s a bike rider, but we come in all kinds. He and the other 3 MDs I ride with are really nice and carrying people.

2 Likes
16

I get those kinds of responses as well. T1D for 53 yrs and using Fiasp in an Omnipod Dash, I only need about 12-14 units a day.
Do you manage your carbs by avoiding high glycemic carbs? I manage my carbs really well and sometimes use the formula for ‘net carbs’. Avoiding high glycemic carbs is the secret for me.
All the doctors I see are quite surprised at my body and the fact I have no complications. Not everyone is so lucky. I just manage as I go and do my best. And yes! They keep on telling me now I’ll die of a heart attack or stroke - which is possible. Take Fluvostatin, 80 mgr a day. It upsets my stomach a lot and sometimes makes me throw up. But they really want me to take it so I do! :woman_shrugging::woman_shrugging::woman_shrugging:

1 Like
17

Hello Sheryl. I didn’t have complications until I hit 51 yrs of being a type 1. I had been following the Bernstein diet, for several years, which is great for some but it was disastrous for me. My LDL went up too high. I had read a book by a Harvard educated physician who said that cholesterol did not matter, so I didn’t question my high LDL number too much. Oh and also there was the theory, at the time, that statins were bad. I ended up with two heart stents, migraines, and dangerously low blood pressure.

Now I eat a very low fat vegan plant based diet with plenty of beans, lentils, grains, potatoes, vegetables, and fruit. My diabetes and arteries love it.

Our doctors are actually correct when they say that diabetics die from strokes and heart attacks. I am just trying to live as long as possible before I die from one or the other. I am 72 now.

I would take a statin if I could, but they cause bad side affects for me. My diet and supplements have brought my LDL down to 68.

Best of luck to both of us!

2 Likes
18

Hi Marilyn - yes, my diet choices basically stick with low-glycemic carbs. Which means I might allow myself to have 4-5 french fries every so often. I eat many, many vegetables that are also low in carbs. Lots of spinach, peppers and broccoli so I can feel satiated with no blood sugar issues.
I’ll take a look at that diet and see if it will suit me. Have a tendency to take the best part of diet plans and apply them to my own eating habits.
I had to try so many different statins to find one that didn’t raise my blood sugar - so now I take 3-4 20mg doses of Fluvastatin throughout the day. Really don’t like them as they do upset my stomach.
Getting lots of active exercise can help with LDL cholesterol too but honestly, the things they ask T1Ds to go through is nutty. Used to think I’d see a cure or better solutions by now but have resigned myself to the fact it’s not gonna happen. So I let myself have treats minimally and hope for the best.
You sound like you’re doing great Marilyn! I wish both of us all the best on our journeys.
Take care and stay happy! :slightly_smiling_face::slightly_smiling_face::slightly_smiling_face::canada::canada::canada:

1 Like
19

What kind of supplements do you take? I’ve been taking a variety of things but prefer to listen to other T1Ds and follow what they’ve found to work.
I would appreciate from know this! Thanks - I will be back a bit later.

Take care!
Sheryl

20

On a side note, they are apparently often vegetarian teetotalers who are known for their longevity so you could possibly bond with your doctor on diet issues. That said, the comment they made to you re longevity is odd and off putting.