Need to vent about this endo

Today was a rough day. I need to vent because I feel like no one around me understands. This will be long winded, and if I repeat myself I apologize. I’m wiped out from today, so my brain is asleep.

I saw a new endo today (I usually just rely on my primary doctor because I have great control and have for years), because I was newly diagnosed with Hashimoto’s Thyroiditis. I wanted to get more thyroid tests done if possible because I wasn’t put on any meds, despite feeling horrible.

The endo is putting in for an ultrasound of my thyroid and getting the same tests that I just had done again to monitor and checking my Vitamin D levels. But in this appointment, I just felt shamed and like I was doing horrible as a T1D even though I KNOW I’m not.

My primary doc did an A1C 3 months ago, it was 5.6. I haven’t had an A1C over 7 in the 8 years I’ve been diabetic, and I’ve been sticking around 6 for a very long time. I’m on MDI and just have a glucose meter, test 8-10 times a day if not more, I keep a blood sugar log and write everything down, and I don’t have extreme highs and lows like I used to right after diagnosis, after I switched to a new long acting insulin.

Today in the endo’s office they did a new A1C, it was 5.7. He uploaded all of my meter’s numbers and printed them out. I’ve had more lows recently (around 70) because it’s hot out, and I always trend lower in hotter months. I was told that I should never have lows. He also told me that I should never correct a high after meals, and only ever take insulin when I eat. He kept going on and on about how my numbers weren’t steady and that they should be a straight line. He said it’s always better to be high than low because a low can kill you. (duh, but so can’t highs??)

I have only ever had 3 times in my entire T1D journey where I’ve been super low (two times in the 30s, once in the 20s) and that was early on. I rarely ever drop below 65 now, and I often catch it before it gets there, but I was told I should never have lows, and that “it’s healthier to be a steady 185 all day long than have a low, because a low rebounds into a high”, which I don’t agree with because I always rebound to a healthy around 100 number. I used to over-treat my lows early on, but I know how many carbs I need now. I only ever over treat if I know I’m going to be really active or I’m out in public and don’t want to drop again.

He asked me general questions, like where I work, etc. I am a homemaker right now, planning to have children. I also have a Bachelor’s Degree in Healthcare Administration. Because I told him this information he said to me “You’re doing good, but you could be doing better considering your circumstances” and I asked him to explain. He said because I don’t work (I do work, I take care of our home, finances, outdoor tasks, etc) and because I have a knowledge of health care, that my control should be better.

Guys, I know not all endos are like this, but I DO NOT UNDERSTAND why they feel the need to act like perfection is possible!! I am a diabetic, why treat me as though my numbers should mimic a non-diabetic?

I went to him just to get more info on my thyroid to make sure it was safe to try to conceive, that’s all. And now I just feel stressed and like a pile of poo. I know I shouldn’t let one doctor get under my skin, because they don’t know my control, and what affects my blood sugars, etc. like I do, but it just upset me. I feel like I want a strong support system of doctors if I’m going to start trying to get pregnant, but if I’m expected to be perfect then I don’t know if I can deal.

This endo was so consumed by diet and the times I eat being the only thing affecting my numbers that I just wanted to scream. Also, the not correcting highs after a meal made me angry. Sometimes, as all of us, I can go up to 200 after a meal and I’m not just going to let it sit there! If I know I’m stacking insulin, I’ll take a smaller dose to get it to normal range without going low, which I do all the time. My lows lately haven’t been the result of too much insulin alone, and my highs (very few of them) haven’t been rebound highs.

It just astounds me why these doctors exist. I’m going through with getting the ultrasound done, and the labs done, but I don’t think I’m going back. I’m talking with my primary doc tomorrow to see if she’s comfortable monitoring my diabetes during pregnancy, and if so I’m sticking with her.

I’m just upset that he had my in his office for two hours, telling me non sense about stuff I already knew, and has a clear disregard for what T1D is really like. I don’t have a CGM, as my insurance won’t cover, but he’s pushing me to get one because he thinks it would make my control better. I’m happy with my control though, and if I can’t afford one, I can’t afford one. I’m open to one during pregnancy but I also want to make sure I know how to manage without one, which I do.

This is long, and I’m sorry for anyone who doesn’t care. I just am irritated, and was hoping for a good experience, but this is the exact reason why I haven’t seen an endo in 7 years. I can’t find one willing to listen to me, especially in my small area.

12 Likes

Just find another doctor is my advice. Sorry you experienced that. It is not realistic that you will never have a low and it is your business how you manage bg, if you prefer to run lower than high etc. many of us do because we don’t want complications down the road and many have bg that goes allover no matter what we do.

Your working and personal life is your business, it is none of his business. He is very nosy, and unprofessional, enough said😳

I recommend getting a dexcom to help manage bg.

Maybe with a video telehealth appointment you can see someone out of your area?

8 Likes

I am for sure!! Thank you for the nudge of confidence lol I told myself going in, to take advice with a grain of salt, but I think because it was going on for two hours, it just got to me. I wanted to make sure I got my thyroid tests ordered so I didn’t say too much, but when he told me to never eat potatoes or corn because it will give me high blood sugar (eye roll) I told him that every BODY is different and that I eat them all the time with no problem. It just makes me sad for those who can’t easily walk away or know how to stand up for themselves. It can be disheartening when you think you might have good luck with a new doc. I’m not aiming my blood sugar higher just to please a doctor who won’t have to live with my body and what comes of it. Heck no to that!

And I am open to a Dex, but if insurance won’t cover it then I’m not going to worry myself over one. I have limited finances for diabetes extras, so as long as I can manage comfortably, I won’t focus on not having the things that aren’t absolutely necessary for me. It would be nice though, especially if I do get pregnant. And good idea! I’ve only searched for endos around here so far, I’ll have to see who is in our network :slight_smile:

6 Likes

Good for you! It is very stressful to have an encounter like that, so it’s good you can vent to people who understand. I have had many encounters like that over the years. There are a lot of crazies out there.

I have to laugh at him telling you you should do better because you are a hcw and then telling you to run at 185 :exploding_head: lol. As a hcw he should know running at 185 is not good at all.

I really would fight for a dexcom and coverage, it will change your life. It is not perfect for me by any means, I still have to fs all the time but it is lifesaving and makes life more livable.

7 Likes

I hate that anyone else would have to go through it too! I’m sorry you did, and thanks for being so kind :slight_smile: There are for sure crazies, it’s just hard to actually experience it because you don’t want to believe what you are hearing is real! lol

I have to ask what an hcw is :rofl: but yes! I can’t stay near 185 all day long or I’m awful to be around! haha I’ve gotten so used to being closer to normal all day that when I hit 170 I start getting grumpy. And I will for sure! I don’t know why insurance companies don’t always cover one, who are they to determine if it’s essential? I just don’t mind the finger pricks, but I know it would give me more to see which would help a lot!

4 Likes

Have you checked if insurance covers Freestyle Libre ? A newer version was just released. It is lower cost than dexcom if you’re paying oop.

1 Like

Huh, you sound to me like the ideal patient, A lot of people would kill for the type of control that you describe.

I can understand a doctor wanting to challenge his patient to do better but this seems like too much. This sounds to me like a doctor with an irrational fear of lows.

Did he have anything good to say about your already excellent control. If not that speaks volumes about him.

6 Likes

When we first got this insurance we checked about both Dex and Libre, neither would be covered if my A1C was good. They said it had to be high in order to get one. That was a couple years ago though, and I didn’t want to fight for one then, but with TTC I’d really like the option.

1 Like

I’ve always taken my control seriously, and I’m a very Type A person so I don’t mind being organized and in routine, etc. So I’ve always thought I did okay, but as of this year I’ve done great. I think the same as well! After I left the office I felt as though maybe he’s just scared of being responsible if something bad were to happen with a patient because of a low. I think it’s absurd. I’m not having extreme lows, and me being so open to share my logs, etc. (which I have never done before), I felt like it was just too much. He only said I was “doing good” but then followed that by saying I could do better, so no praise at all. Not that I look for that, but acknowledgement that I know what I’m doing, more so than someone who isn’t diabetic, would be nice! Medical education about a disease only goes so far, if you don’t live it, you only have a snippet of what it’s really like!

1 Like

Try checking again, may be approved due to tighter control during pregnancy = better for baby and mom!

2 Likes

Venting is good medicine…

3 Likes

It’s :poop: like this that gives me “white coat” anxiety. I don’t need a doctor, but the FDA requires someone licensed writes the scripts for me. So frustrating!

I currently have a doctor that I love, an Internist, not an Endo, because she openly admits she doesn’t know a lot about diabetes but she’s happy to enable my self care… so long as I’m good at it. If I were more problematic, she’d make me go to the one Endo on this side of Colorado that I positively LOATHE.

I’d fire your Endo so fast. Remember, they work for you! I’d also leave a negative Google review explaining why they lost your business, so other people know to run for the hills. We don’t need to be spoken down to or mistreated. Mine hugged me when I got my first 5.8… And said goodbye, because she said I didn’t have to come back till next year if I’m running under 6. . Your doctor should be every bit as proud of your excellent control as you are (or as proud as you should be).

If that doctor is treating you so poorly, imagine how their struggling patients feel?

5 Likes

@daisy707. Do you have hypoglycemic unawareness? Most insurances will cover a CGM if, like you, you are testing more than 6 times per day or have hypoglycemic unawareness. Research your coverage a little more.

If your new endo has a CDE in the office, get them on your team. Take control!

2 Likes

One and done. Move on!

2 Likes

It is unfortunate, but that is life in the diabetes and health care world in general, so when we run into that the best thing to do is move along if we can, after giving some advice etc.

Hcw = health care worker, you said your degree was in medical administration so it is not exactly the same but an offshoot I guess… what I meant was he said you have knowledge of healthcare and then told you something contrary to what we know about bg effects but which sadly many pwd are told- run high bg etc.

I feel uncomfortable most of the time in that range and would not intentionally let it run there if I can get it down. Your body is getting damage for sure at that level for any length of time.

I think you would love the dexcom, even if you still need some finger sticks here and there. For me it is off a lot frequently so I don’t dose or treat on dex without recent finger sticks. For instance today it has already been wrong several times by 50 points or so, it is usually right about the trends.

I think if you fight for it you will get one hopefully, most will cover it if you are type 1 but sometimes you need a doc letter etc. maybe. You will get one in a pregnancy I think, most docs want you to keep bg numbers in a low normal range then now according to what I have noticed posted.

Maybe this endo will put you on thyroid meds and then you can take that info back to your doc or to another endo.

2 Likes

Same!! My BP is always a little elevated at appointments and as much as I try to calm myself down, I just can’t help it. I don’t understand why there is so much judgement on us as diabetics and not enough support! I wish more doctors truly understood the hard work that goes into this disease, and not just focus on one aspect. I used to see an internist and then my insurance changed, but it changed again and she’s in network so maybe I should go back, or find a new one!

And I am not going back! I’m going to go ahead and get the thyroid ultrasound done, and the bloodwork, get the results and take them back to my GP. If I need a specialist from there, I’ll search for someone new. I can’t deal with the stress of trying to explain and defend my control at every aspect ESPECIALLY if I get pregnant. Pregnancy is going to be hard and stressful enough (I’m already an anxious person), so I don’t need that negative crap in my life! lol

I’m so glad you have found doctors you love! I would cry if an endo hugged me and honored my hard work! It truly breaks my heart for so many people to have to deal with horrible doctors. :frowning:

5 Likes

If you want to reconsider CGM, it’s really not so bad as you might think. I pay cash for my Dexcom supplies. I have a weird “in-house” insurance situation. It’s amazing for some things, but non-existent for others

The best deal I’ve found for Dexcom supplies is through the Sam’s Club pharmacy, which gives you a massive discount if you’re a Plus level member (costs $50 more than basic membership fee, but you’ll make your money back in your first supply order). I get 3 sensors for $284 and a transmitter for $125. You don’t need a receiver. I also restart the sensors and use them for 30 days each. Works out to be ~$113/month that way. In reality, it costs less, though. I’ve had enough sensors fail short of the ten days that I wind up with extra I don’t pay for at all. (Even if I only get 7 days out of a sensor, but they send a replacement that I get 30 out of, I still got 7 days wear for free). I’ve also had two replacement transmitters. The last one died after 27 days, so I got almost a whole month of free transmitter use.

2 Likes

I don’t! I’m thankfully still aware and feel them early on, most of the time. Sometimes if I’m super hot already or being very active, it can be harder to tell until I’m on the lower end. A CGM would be great for this reason alone! And I’m not sure about a CDE, I’ll have to look!

1 Like

Thanks for clarifying! I should have known that lol My brain is mush after today! I have read about other people being told to stay on the higher end and I just can’t understand it. I’m already prone to UTI’s, if I let my BG be that high all the time I would be a mess! I don’t think 185 after a carby meal is too bad, I would correct if need be or let it go down naturally if I’m active, but I just can’t imagine a day long ride with that number just to get a straight line on their print out. Give me a break :sweat_smile:

And noted! That’s my plan; just see what my results are from the ultrasound and bloodwork, get his answers and move on. I don’t need him for diabetes management at all, but if it can give a nudge to my GP to keep track with looking after my thyroid (for now), I’ll be okay with that.

2 Likes

I would like one, and I might even see if Freestyle Libre is covered! I do have to be really strict on my budget though. We’re saving for baby in case that happens, and we have other big expenses. If I can manage for a while longer without I will, but it’s definitely at the top of my list of priorities to at least look into.

2 Likes