Anyone else above their doctors pay grade?

So a couple years ago I was diagnosed with type 1, despite almost everyone telling me it is impossible since I would have known since birth. Anyway I have a wonderful GP who probably saved my life. That being said neither of us can figure out wtf my body is doing. I guess my situation is odd for a couple reasons and he told me I’m above his pay grade lol. He referred me to an endo who apparently got his degree from a cereal box, since he had no desire to look at my logs, or know my eating routine, or anything diabeetus related, he was just like," YAAAAS EVEN THOUGH YOUR KIDNEYS ARE WORKING BETTER THAN MINE I WANT TO PUT YOU ON A VASODIALATOR DESPITE YOU NOT HAVING HIGH BLOOD PRESSURE". Needless to say I never went back to him. At this point my and my GP are at a stale mate because the lowest my A1c had been is 8.1 and neither of us know what to do. Anyone else have/ has had this kind of problem?

So a couple years ago I was diagnosed with type 1, despite almost everyone telling me it is impossible since I would have known since birth.
On the face of it and without further explanation the "known since birth" comment makes no sense to me. What were you (or "everyone") trying to say?

While the old term for Type 1 was “juvenile diabetes” it was changed because you don’t need to be a child to get T1 it happens often enough to adults as well. I was diagnosed as a T1 in my early twenties.

What T1 or other test results do you have? What treatment are you currently using? Diet alone? Insulin? If insulin, are you using MDI or a pump?

My understanding is that the reasoning behind prescribing blood pressure medication to a diabetic was because there was reason to believe it helped to avoid future kidney damage in diabetics. That was the rationale why I was put on lisinopril a decade or two ago. But I do not know what the current medical opinion is on doing this.

I was put on BP meds at 19 even though I did not have high pressures. As commented above, it is a prevention thing.

BP medication, especially ACE inhibitors (not necessarily vaso-dilators) protect your kidneys from damage. that’s why it’s a pretty standard treatment for “diabetes”.

the other prophylactics they will suggest are aspirin and statins, because the world of t2’s there is a lot of data that suggests that “diabetics” die of heart disease. These medications tend to help.

a1c of 8.1 means your average blood sugar level is 186 mg/dl. that’s average blood glucose, and IMO it’s kinda high. I am guessing you want to reduce your a1c below 7.0 I would recommend you get a hold of a book called “Think Like a Pancreas”. take a look at your fasting and post meal glucose levels there are many strategies for better glucose control but my best advice is: low carb meals and regular exercise. it’s a crappy disease and it takes years to figure out but you can do it. I couldn’t do it with shots alone, so I started pumping.

i do make comparable money to some of my doctors but that doesn’t mean I am smarter than they are =) it’s more about experience and people skills. good luck!

BP medication, especially ACE inhibitors (not necessarily vaso-dilators) protect your kidneys from damage. that’s why it’s a pretty standard treatment for “diabetes”.

the other prophylactics they will suggest are aspirin and statins, because the world of t2’s there is a lot of data that suggests that “diabetics” die of heart disease. These medications tend to help.

a1c of 8.1 means your average blood sugar level is 186 mg/dl. that’s average blood glucose, and IMO it’s kinda high. I am guessing you want to reduce your a1c below 7.0 I would recommend you get a hold of a book called “Think Like a Pancreas”. take a look at your fasting and post meal glucose levels there are many strategies for better glucose control but my best advice is: low carb meals and regular exercise. it’s a difficult disease and it takes years to figure out but you can do it. I couldn’t do it with shots alone, so I started pumping.

i do make comparable money to some of my doctors but that doesn’t mean I am smarter than they are =) it’s more about experience and people skills. good luck!

On the face of it and without further explanation the “known since birth” comment makes no sense to me. What were you (or “everyone”) trying to say?

They were saying that if I was T1 and not T2 I would have known since I was a juvenile, a child and not 20 something years old.

What T1 or other test results do you have? What treatment are you currently using? Diet alone? Insulin? If insulin, are you using MDI or a pump?

My A1c last checked was 8 and I got the pens. My insurance won’t pay for pumps.

My understanding is that the reasoning behind prescribing blood pressure medication to a diabetic was because there was reason to believe it helped to avoid future kidney damage in diabetics. That was the rationale why I was put on lisinopril a decade or two ago. But I do not know what the current medical opinion is on doing this.
I was put on BP meds at 19 even though I did not have high pressures. As commented above, it is a prevention thing.

This is true. It is a preventive measure with diabetics but there is also a lot of complications that can come from taking vasodialators especially in the case of someone without high blood pressure. I am a pharmacy tech and blood pressure medications are considered high risk because the side effects could be fatal.

The main problem I had with him is he had no interest in trying to help my with my crazy ass blood sugar numbers, as one would think he might like to look into, with him being an endocrinologist and all.

The main problem I had with him is he had no interest in trying to help my with my crazy ass blood sugar numbers, as one would think he might like to look into, with him being an endocrinologist and all.

I know what you mean. Since type 1 is so individual sometimes you can get answers from the Dr and other times you have to get them from experience. If it were me I would switch doctors and hopefully you stumble across one who has some other ideas. In the mean time, take notes of what you eat, mood, any stress factors (from mental to physical), exercise and so on. The array of variables can be rather large as you most likely know. I have an anxiety disorder and at times my sugars fly all over the place. Since a traditional approach does not cover a variable like this in most instances I have to try to figure that one out on my own.

I had an endo once that was more concerned with trying to diagnose me with more stuff and too was neglectful of any interest in diabetes it’s self. My vet shows more interest in my dogs health than he showed. So I decided to look for a Dr that truly had an interest.

Finding a good doctor is a bit like dating. Costs about the same too haha.

I don’t get why anyone would tell you that you would know you’ve had Type 1 since you were very young, that doesn’t even make any sense. Anyway, is it lisinopril they wanted to prescribe for you? In addition to keeping blood pressure low, and we are now hearing that it should definitely be 120/80 or lower, it is also great protection for the kidneys. So as long as it’s a mild dosage, say 10mg/day or less, that can be very beneficial. Keep looking for an endo, because as good as your GP may be, there is no way they will know more about Type 1 than a competent endo. You may also find it helpful to get a referral to a Certified Diabetes Educator in your area. They are specialized RN’s that will analyze your BG numbers, maybe help you refine carb counting skills, and meet with you a few times to get you on track. I love them because they usually schedule 1-hour appointments with you and are willing to talk about whatever you need, plus they tend to have better bedside manner. Are you in the U.S.? Almost all insurance covers pumps these days, but your doc might have to send in a recommendation and some documentation to confirm that you are willing and able to keep BG logs before they will approve it.

Do you find that only your a1c is always above 8? One thing to perhaps ask about is fasting, i know we do it for blood work, but extended fasts with glucose tablets handy have been able to help even out blood sugars and give you body a chance to settle.

If you want to reduce your HbA1c without a pump then you need the PredictBGL App (iPad/iPhone)

Let me know if you need help setting it up.

I was diagnosed in 1945, when I was 6, but I have read about people in the US being diagnosed in their 80s. it can happen at any age, and at any weight.

I have never heard of an endo with so little knowledge of T1D. Perhaps this endo is “burned out” and is not keeping up with current knowledge?

I joined several online diabetes support groups and learned many things that my doctors never told me. My online friends convinced me to use a pump. I have much better management with my pump, my range is much better, with fewer highs and lows. A CGM is also a very big help! If your insurance does not cover a pump and a CGM, you can still have good control with your pens, but it is more difficult. I have had an A1c in the 5.5-6.0 range for many years, including years before pumping. Counting carbs and bolusing with appropriate insulin:carb ratios works very well for me.

I have used meds for my BP for many years, but I did not have a BP problem before starting. I started having higher BP later on, and am currently using Lisinopril. I get dizzy from using those pills, so I cut my dosage in half. That works well.

I have lived with T1D for 40 years and have been fortunate enough to have a great Endo whom I have been seeing since I was 15. She has walked through puberty, the birth of 2 children and now menopause. Your GP is right, if the Endo you were referred to seemed like they didn’t care; try another one. I can’t say enough about having a knowledgable Endocrinologist that can work with your GP. It is been great to have a team that works together. Personally, I have never been asked to go on blood pressure medication but I have naturally low blood pressure. Recently, my GP wanted to put me on a statin for high cholesterol, (which I don’t have) as a precaution. We agreed for me to have a cardiac scan done to look at build-up. My score was very low and with the input of my Endo, we decided I didn’t need to take one:) Good luck finding an Endo…it’s worth it:)

Endicrinology covers a number of different medical conditions in addition to diabetes; and the endo you choose may have chosen to specialize in another area. I read a review about one endo, where the patient said he was no help with her thyroid disorder, but other patients found him excellent with helping them with their diabetes (which was his area of specialty).
When you’re shopping for an endo - and you do have to shop around - be sure to ask if they specialize in and are board certified in diabetes treatment specifically, to start.

Are you on a basal insulin, like Lantus? I was never able to get my A1c below 7 (to my knowledge) until Lantus im 2000. Lantus and a CGM are really all that was needed to gain control of my condition, and likely yours too. Certainly keep looking for an endocrinologist you can relate to and respect. Is there a teaching hospital nearby? This is your best bet. In 59+ years as T1 finding good docs has been my greatest challenge - they can be LETHAL. You must be proactive – keep looking for the smart and relate able doc you can have an open conversation with, and one willing to invest the time to get your situation figured out. Persevere and Good Luck!