Need to vent about this endo

Thank you all for your kind words so far!! I could cry happy tears! I hate that I got so worked up over one doctors visit, but I’m glad to have a community and people to come to that get it! Thank you all so much :slight_smile:

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Daisy, I was dx with type 1 in 1959. Believe me, I have had plenty of lows throughout the years and they haven’t hurt me. Yes, severe lows can hurt you, but numbers in the 60’s are nothing to worry about. I am much more worried about highs.

Your new doctor should have been telling you that you are doing a great job. I don’t use a doctor for my diabetic care and haven’t since my son was born 32 yrs ago. I go to GP’s only and tell them that I treat my own diabetes and I just need them to write prescriptions. Since all of my A1c’s have been in the non diabetic range for almost 20 yrs, they are happy to write me prescriptions for insulin.

I only recently got a CGM. I like it, but I was fine without it. My A1c stays about 5.2. I only use insulin pens. The CGM challenges me to stay between 65 and 140 as much as I can and I like the challenge. The only time my glucose level is almost perfectly flat is when I am sleeping.

When pregnant I kept my A1c very low in the 4’s and 5’s. I did use a OBGYN for difficult births since I was 37 and had been a diabetic for almost 30 yrs. I also used a doctor who specialized in diabetes, but she wasn’t an endo. I was watched very closely. The pregnancy was fine and my son weighed 6lbs 3oz. He is now 32 and does not have diabetes.

I think you need to find a doctor who respects you and your knowledge about your own diabetes.

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No wonder after 2 hours of that😹 But at least something good may come of it if you get thyroid meds etc.

Those moments are like twilight zone moments… I also can’t believe the things some hcw have said to me. I almost walked out of a neuro appt once because she was arguing with someone about her broken computer on the phone😹 I ended up reading my own Mri for that as well because I never heard from her again.

My endo gave up saying too much about bg control to me, my cde will go over things a bit but not too much. She is nice and helpful. Her son is type 1 but sometimes she does not understand certain things. She was talking about a trend on my dex and I kept telling her it was wrong because many of the numbers were off because dexcom was wrong…lol. If your data is not accurate neither is the trend pattern.

I was telling her what had really been going in with bg with some bad low swings etc and highs and other stuff. And she said that didn’t happen because of the dexcom trend instead of listening to me who knew what my fs were and what my actual bg was from symptoms etc. which is nuts. I had to explain it a few times for it to sink in.

I think it is hard for anyone to completely understand what we each go through as individuals with this, even other pwd.

As you said we are all so different. A lot of people on here seem to have a much easier time than I do. my bg tends to move fast and go high and low a lot. I have lows all the time, tg I have all these devices to help me. You seem more stable and you are doing a great job. Mdi was terrible for me. The pump and dex although a ton of work, are much better for me.

185 is not terrible at all for a meal spike imo but no one should stay on a straight 185 line unless there are some good reasons and then it would be temporary. For me I never want to be too high before I eat, that is a recipe for disaster although I have to manage it at times.

At one point I went to a new endo briefly as a follow up after a dka event and I believe they said the same to me about letting bg run high, not correcting unless too high.etc. They tried to tell me it was normal that my bg was crashing every time I ate. At that point I practically started yelling at them and a doc came to talk to me. I told her that she had no idea what it was actually like to live with this disease… She agreed with me, she was very polite and she agreed to get my records for me because I was not going to come back there LOL.

The nurses were the ones who said that that was normal, and then said they did not give advice on nutrition etc. I had a lot of gastro stuff going on then which was wreaking havoc with my bg. Basically none of them had any clue how to help me except to say let bg run high and eat more carbs etc.

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This is great to hear!! :slight_smile: Thanks for sharing your experience, it makes me feel better about my choices! You’ve done a great job at BG control, and it’s good to know that I’m not alone. Today was rough, but everyone here is helping me feel better!

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Twilight zone for sure! I started spacing out too after he kept going on about me not eating potatoes :rofl: oy. I can’t say I’ve yelled at anyone yet but I sure could have! LOL I had a past endo keep pressing on my trachea (I didn’t have thyroid issues back then and I was super thin before gaining weight from diabetes, always had been very small) and she told me I had a goiter. I’m not kidding, she was pressing so hard over and over that she was choking me. After the 5th time of her “checking” I told her to stop.

I’m not sure if this new facility has a CDE but I’ll have to look into them! No kidding about the Dex! I don’t have one yet but that’s one thing I’m aware of; that finger sticks will still need to happen! One thing hcw’s don’t seem to understand too, is that our bodies don’t always like to absorb insulin properly in some spots or take sensors/etc properly! I’ve read about so many people having pump site issues/dex issues/ etc from bad spots alone, not to mention just mechanical malfunctions. Why can’t they see all of this? :upside_down_face: I feel like if they had to actually learn all of the info we know, they wouldn’t make it :sweat_smile:

And I’m not always stable! Today especially lol The appointment got my stress elevated and I fought highs around dinner, and ever since then I’ve been low. Back to back lows (I didn’t take a ton of insulin either), but my body is balancing back out so I’m not normal yet. I definitely have at least one low a day in the summer. My body just runs lower in the heat. But when I was taking Lantus I was all over the place. I was the epitomy of a roller coaster and I thought it was normal until I switched to Tresiba. I had to because of insurance but I’m glad I did and can’t see being on anything else. It’s like a whole different life with being on the right insulin for my body! Much smoother sailing for sure. I had some scary lows on Lantus, I would never go back (if I had the choice).

And I’m sorry you were dealing with all of that! It seems like sometimes, we have to go to doctors for answers because we don’t know what to do, only for ourselves and our bodies to figure it out because the doctors don’t help. lol I feel like sometimes I can freak out about something but once I see that someone else can’t help me, I’m better help to myself after seeing another (mostly wrong) persepctive. Gastro issues are no fun!! I hope you’re doing better now!

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A type 1 usually qualifies easier nowadays I think for a CGM. If this endo thinks you are going too low, find out if he will work to get a CGM covered by insurance for you. They have ways to get them covered usually. And if it’s not covered you don’t have to actually get the prescription filled. Endos are better at paperwork, just think of it as payback for him being a jerk to you. You don’t have to see him again, because if you qualify, your doctor can just give you the prescriptions after the first work that gets you qualified. I would mention you are trying to get pregnant too, that might help.?? Also Dexcom’s pretty good about working with doctors to get their sensors covered, they might be able to help. You might call Dexcom and ask them if they can find out about your insurance and maybe you won’t even need the endo. My insurance covered them under DME so there was no charge for any of it. My insurance was free for a Dexcom, but I had to pay for a Libre.

How horrid. What a jerk. My first endo was a jerk big time too. I outright refused to go back to him after the second visit. Some endos are control freaks I think.

Most type 1’s aren’t near that A1c number. And on top of that under 70 is not horrible either. Mine never says anything to me about being under 70, ( I’m rarely under 65) nor did my last one.

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One of the best posts ever was ABOUT WALKING A TIGHTROPE 24/7

Ask him if he can do that!

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I have a low opinion of endos. I think they’re embarrassed because they don’ t know what they’re doing. All of you on this website know more about diabetes than they do. And the endos know it. I help my brother who has T1D and I am completely appalled with how America’s healthcare system treats people with diabetes. Endocrinology is the study of hormones and they don’t know anything at all about hormones. How can they not be embarrassed? Our healthcare system doesn’t even supplement vitamin d. Supplementing Natural hormones should be a part of mainstream medicine by now. I made the comment to one endo that my brother’s vascular surgeon commented that my brother was his only patient with an a1c lower than 7.The endo completely went off because I said that. She said a vascular surgeon doesn’t know anything about diabetes. she said she works with diabetes all day long. Just because you do a job all day doesn’t mean you’re good at your job. The only person I’ve found to help my bhad diabetes but rother is a nurse practioner who works in an Endocrinology practice. I have never had diabetes, but I tried a few endow because it’s obvious I have low metabolism. The only thing they did was belittle me. I think bullying people is the Endocrinology culture because they know they don’t know what they’re doing.

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Where did you find this guy, Daisy? Geeze, he’s a piece of work. This relationship isn’t gonna work out between you two.

Can you all in rural areas have access to telehealth appointments, now? Because of covid?

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Here is a relevant section from the book Biochemistry, 5th edition.

I highlighted the relevant sentence below. Basically, the brain uses a specific glucose transporter (GLUT3) which has a high affinity for glucose and is able to still get glucose even when your BG level is very low. The affinity is usually expressed as the Km (Michaelis constant) of the enzyme, and the critical point is 39.6 mg/dL.

The brain also uses GLUT1, which also has a high affinity for glucose.

Wow, it’s almost like the body was designed to try to make sure the brain is able to get glucose longer than any other tissue or organ. Like the design knows how important the brain is!

The body is smartly designed. There are all kinds of backups and safety systems. The human body is smarter than any endo.

Stay above 40 as much as possible (I don’t mean 40 is a target, I mean of course try to stay above 70, but a quick drop down below 70 is not a big deal).

Short dips are fine as long as you don’t keep going lower and are no longer able to respond. The danger is when you lose responsiveness, keep dropping, and can’t self-treat.

Section 30.2 Each Organ Has a Unique Metabolic Profile

The metabolic patterns of the brain, muscle, adipose tissue, kidney, and liver are strikingly different. Let us consider how these organs differ in their use of fuels to meet their energy needs:

Brain. Glucose is virtually the sole fuel for the human brain, except during prolonged starvation. The brain lacks fuel stores and hence requires a continuous supply of glucose. It consumes about 120 g daily, which corresponds to an energy input of about 420 kcal (1760 kJ), accounting for some 60% of the utilization of glucose by the whole body in the resting state. Much of the energy, estimates suggest from 60% to 70%, is used to power transport mechanisms that maintain the Na±K+ membrane potential required for the transmission of the nerve impulses. The brain must also synthesize neurotransmitters and their receptors to propagate nerve impulses. Overall, glucose metabolism remains unchanged during mental activity, although local increases are detected when a subject performs certain tasks.

Glucose is transported into brain cells by the glucose transporter GLUT3. This transporter has a low value of K M for glucose (1.6 mM), which means that it is saturated under most conditions. Thus, the brain is usually provided with a constant supply of glucose. Noninvasive 13C nuclear magnetic resonance measurements have shown that the concentration of glucose in the brain is about 1 mM when the plasma level is 4.7 mM (84.7 mg/dl), a normal value. Glycolysis slows down when the glucose level approaches the K M value of hexokinase (~50 μM), the enzyme that traps glucose in the cell (Section 16.1.1). This danger point is reached when the plasma-glucose level drops below about 2.2 mM (39.6 mg/dl) and thus approaches the K M value of GLUT3.

Fatty acids do not serve as fuel for the brain, because they are bound to albumin in plasma and so do not traverse the blood-brain barrier. In starvation, ketone bodies generated by the liver partly replace glucose as fuel for the brain .

Link to that :arrow_up: section in Biochemistry, 5th edition:
https://www.ncbi.nlm.nih.gov/books/NBK22436/

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I’m sorry that you had to go through this, Daisy. I think that you should rely on this community for its great advice, and, of course, find a new endo! I, for one, think that you have amazing control and that you should be very proud of yourself. In fact, I’m a bit jealous of your control. My a1c is generally in the high 6’s/low 7’s. (I am a bit embarrassed to admit that on here, actually, because everyone seems to have better numbers. An a1c in the 5’s is a goal that I have never been able to attain, at least not yet. (It’s been 30 years))

I have also learned a bit from this thread - for example, that many T1D’s do not go to an endo! I have been going to the same endo for many years. I was happy enough with him for a while, but recently I have felt that it may be a good idea to look for a new one.

I have the opposite problem than you have - instead of being berated for 2 hours, I get dismissed in about 5 minutes. I had a Telehealth appointment with him a couple of weeks ago, which was completely pointless. I need to put in the caveat here that I did not get my bloodwork done prior to the appointment. (I have much anxiety about going to places like labs due to covid. This is something that I need to work though, I know.) Anyway, he chastised me for not getting the tests (okay, fair), but then he did not look at the numbers I uploaded from my meter, or really even ask how I was doing. He just told me (twice) to not use the pandemic as an excuse to gain weight (Okay…I have never had a problem with weight!) and that was it. I did feel a bit deflated after that appointment.

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Suggest that this endo wear a CGM himself, and he’ll discover that even nondiabetics don’t have straight lines; they go up and down with food. They just come down faster.

As others have said, get a better endo.

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Very true Gretchen. It a doctor ever told me that my glucose levels should be flat lined at all times, I would ask him If he/she could do it. Some of these doctors don’t really understand what living with diabetes is like.

I am all for trying to get most people with diabetes to take better care of themselves, but to berate someone who is clearly doing a great job is ridiculous.That doctor clearly has a personality problem.

I had one GP who constantly told me that my A1c was too low after the ACCORD study came out. I had another who wouldn’t treat me because my A1c was around 5 and she said it shouldn’t be lower than 6.5. It never occurred to either of these physicians that the study could be flawed. Here I am many years later still doing just fine with a new doctor.

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I agree with the sentiment expressed here by many. You are managing your diabetes well, @daisy707! It’s a shame that the endo you visited could not appreciate just how good a job you do.

On top of that, he did not focus his attention on what was important to you, your concern about your thyroid. His foray into your glucose management was not invited or necessary. And worse than that, I think it was ill-informed and wrong!

Most of us place a good deal of respect into what our doctors tell us and it’s easy to be upset about what they say. I’ve fallen into this trap many times. You have a good sense of yourself, your diabetes regimen, and your management. You were right to conclude that his advice was poor.

We expect a lot from our doctors. They must be knowledgeable, up-to-date, competent and good communicators. That’s a tough combination but necessary to be great doc. Your job is to judge whether this relationship fits you.

Your assessment of this guy is on the mark. Remain confident of your ability to manage your diabetes as well as identify who to trust to help with this tough challenge. Good luck!

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Thank you!! I’ll have to look into this and make calls. I’m making so many calls today to get these endo tests ran, so I can be done with him. lol And the problem I had with him saying I was too low all the time was his chart. He printed off my meter numbers, and a lot of them were red dots at the bottom, a few at the top which were higher (I’m talking around 180, 200 occasionally). Most of my numbers have been near normal or in the middle lately. He was only looking at his print out saying I was low, but most of my “lows” are 70 or above, most around 100. So I was confused by him asking me to be a straight line down the middle, and was concerned what those middle numbers would have to be! It’s almost like his chart was off, saying that all my close to normal numbers were low, and what he considered good would be 180 or around that. I didn’t catch onto this until last night after thinking about it, and wish I had asked him what his preferred target would be (not that I care what his is lol).

Definitely not seeing him for my care. I contacted my GP today to see if she’s comfortable with monitoring my diabetes and ongoing thyroid testing and she said yes, so I’m just sticking with her. I’m gonna check about the Dex too, and if she can just continue on the script if it’s covered, then all is well again and I can leave this behind me!

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I wish I could think of all these clever responses while I’m in the room!! I had so many after I left :rofl:

Sadly I researched and researched for a good endo in my area. I asked people I knew for recommendations, skipped the “bad” ones, and went to him because of his reviews. Pardon my french, but reviews don’t mean poo! not a fan, won’t go back. I live in such a small area, that I have to travel 40 min any direction to see any doctor. It’s a pain and I’m trying to get my ducks in a row before TTC. I’ll be glad to have those ducks because this is exhausting lol

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Don’t feel bad! I’ve only gotten lower on my A1C’s the past couple years because of new techniques. I bolus 15 min. before a meal if I’m high enough and know i won’t drop, I’ve been checking more often; just trying to figure out what my body likes best and what works for me! a 7 A1C is still good! I always feel better if I’m 6.5 or under, but when cold weather hits, I become insulin resistant till I find new changes that work. We all have struggling times, and that’s okay! And we always have time to strive and do better if we choose, or at least try. I know that no matter my A1C, I’m doing the best I can with the tools I have, and the mental strain I can deal with. If some days I feel like eating like crap and having highs I will, if that gives me the little break I need to just relax about diabetes. This disease is the most mentally and physically grueling thing ever, so I don’t judge anyone for what their numbers are. I know for me, it took LOTS of reading and research here on these forums before I gained tighter control, because doctors don’t explain squat or know squat about all of this. I hope you can find peace in that and get to where you want to be! But never be embarrassed by sharing your numbers here, we’re all in support of you! :slight_smile:

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LOVE THIS!!! :raised_hands: AMEN! I knew this already, and I wish I would have remembered to bring it out of my pocket! lol I need to make a list of all the things I think to say AFTER an appointment, maybe get it tattooed on my arm :rofl:

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It’s almost like we can’t win for losing! Or whatever the saying is :upside_down_face: I guess going into any appointment, we just have to know to trust ourselves more than doctors! We are stronger than ever, and no one should tell us otherwise :slight_smile:

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