Vitrectomy, an update, and not so impressed by new doctor


#1

It has been a while since I have been on here. Most of you that have read my past postings know that I have struggled with anxiety and sugar control for a long time now. In August of 2012 I had laser treatment done one session per eye, and then was put on Bromday drops which were supposed to help stabilize my leaky blood vessels after the fact. I have progressed to the point of needing a vitrectomy in both eyes as of a few weeks ago. Over a period of a couple of weeks, I lost a lot of my central vision. I am only able to measure up my insulin by zooming all the way in on the syringe with my cell phone camera.

My retina specialist won't do the surgery with where my blood sugars are running. I also just started with new insurance the beginning of April, and had to change both my endo and primary care doctor to in network providers. Unfortunately this means pretty much starting over as far as building any kind of history with the new doctors...ugh. Been a busy last month here medically.

Anyway, I had my first appointment with the new endo today. I was hoping for a pretty easy start up and some guidance as far as what needs to be done to get me to where I can get my eye surgery. I have even been considering a hospital stay to get myself under control for this. I left the office somewhat disappointed. I met with the nurse first, and she went over my meds and then my history. I told her about my Humalog and Lantus, and when she asked for my history I told her I was Diabetic. She asked if I knew which type, and when I said Type 1 she said, "but you take insulin?" Didn't really make a great first impression, but I let it go figuring once I saw the doctor it probably wouldn't matter that the nurse seemed confused.

The doctor briefly went through what was going on, and when it came time to talk about what to change to try to get a handle on things, some of the suggestions didn't sit so well with me. As far as food intake, she wanted me to start towards what sounded to me like a low carb diet. Granted my diet isn't great, but with everything else I have going on with eyes, anxiety, and sugar control problems steming from the anxiety, I don't feel like the diet change is something to worry about right now. Possibly further down the road, but not now. I also don't know how I feel about low carb. I have only read some minimal information about it, and would want to learn some more about it first.

The other thing that I was uncomfortable with was she told me to forget about formulas and to take x units at breakfast, x units at lunch, and so on. She did give me what I suppose would equate to a sliding scale for corrections, but she wanted me to stop carb counting. I have counted car4bs for the last 15 years now, and was on the fixed dosing before that. To me this seems like an old way of managing this disease.

I am leaning towards looking around more for a new endo, but am really at a point where I can't have this process take forever with needing my eye surgery. Thoughts?

Also appreciate any feedback on the vitrectomy itself. I have read all of Robyn's post from her procedure, and I understand at the very least to expect a fairly slow recovery after the fact.

If you made it this far, I appreciate you taking the time to read all of this.

Ryan


#2

Ryan,

My suggestion for you is to find a new doctor. You may want to call your insurance company and see if they offer any CDE or Nurse advice call in numbers? Mine does, so I speak with a nurse once a month, just to catch up and see how things are going. We evaluate potential new drugs and how they might impact everything else in my life, not just diabetes.

You need a doctor who follows the most up to date protocols - no sliding scales! So what if you eat a ton of carbs, if you count them properly and dose as needed, I see success happening. It may just be your settings.

I say you pick a new D Team. Focus on your current goals. Maybe go back to your eye surgeon and ask if he has a colleague he would suggest for an Endo.

Anne


#3

I agree your doctor seems stuck in the dark ages. Changing is an option, but I know you are pressured right now with your need for surgery. One good saying for white coats is "take what you need and leave the rest". Since you are really wanting to get your Blood Sugar in better range for the surgery my suggestion is to be proactive. Ask some specific questions on here about what works for people who have been successful in maintaining good numbers. Do what you already know works such as carb counting and be open for what you might suspect doesn't. While some people can eat a ton of carbs and have good results, most of us find we need to limit somewhat to get the results we want. But "somewhat" is different for us all. You express your reluctance to go "low carb" but perhaps there are some foods you can limit or switch to that would lower it a bit from what you currently eat and see how that affects your control. It isn't all or nothing!

Only you know what is keeping you from getting where you want to be. Is it anxiety over lows (or anxiety in general). Would it help to see a counselor, and/or consider medication. Many of us struggle more with the emotions than the mechanics of D and addressing those things will help control. Are there bad habits you've developed? Do you not test enough? That will affect everything, so if that is the case, commit to a certain number of tests. Keep records, whether on old school tablets, or with technology. Look for patterns. Recalculate your I:C, basal and ISF. If you don't know what those things mean or how to calculate them, consider getting Using Insulin by John Walsh. See when you are high and look to tweak the doses affecting that time. Evaluate problem foods. You may not go Bernstein low carb, but if pizza or cereal is always landing you in the 200s that is telling you something! You can do it, with or without the world's best endo! Set your goals and tackle one at a time so you don't get overwhelmed. When you succeed at something give yourself a pat on the back and go on to the next task on the list. Poco a poco as we say in Spanish (little by little) you will get where you want to be!


#4

If you want to know more about low carb I highly recommend Dr Bernstein's Diabetes Solution. He also provides a lot of advice for type 1's on insulin. I had already decided to go low carb based on my meter before I even found Dr Bernstein. So his advice made sense to me.

I'm following his advice and have done well with it, but I am a fairly new diabetic type II with only mild symptoms. I have my blood glucose normalized and my symptoms are slowly improving.

I can't say much on doctors. My own internist provides limited direction on my diabetes treatment, but that suits my personality since it allows me to take more control of my own treatment.


#5

Dr. Bernstein's methods work for many but they take an extreme amount of commitment. Many find them very hard to adhere to.

Some folks use Dr. Bernstein's book as a bible but I use what I learned in a more moderate fashion.


#6

The level of dedication to it is what worries me a little. I am sure I can and should be eating better than I do, I just worry that I wouldn't be able to stick to something too extreme.


#7

I am certainly open to more reading and a better understanding of what low carb is all about and how to implement it. It does interest me, I don't mean to sound like I am against it at all. The dedication needed is the only part I know I will struggle with.

As for doctors, I also tend to prefer someone who will look at what I am doing and pretty much give it an ok or a something needs to change here. I am thinking I will try to work with this new endo for now, it just bothers me that even if what I am doing works, I feel like I will never have her blessing for how I am achieving my goals.


#8

"I will never have her blessing for how I am achieving my goals"

That's a hard one! Even though I think of myself as being independent minded and more than willing to sift through all the info, I, like you, would still like my doctor to cooperate and make suggestions including any additional tests to verify my state. Based on the fact that he prescribed a statin and kept me my on my beta blocker I think that he is following the protocols of the AHA and ADA. I also suspect that he does not care that much about diet and exercise because he believes that most patients will not successfully follow through.

Now since I have dropped the statins, beta blockers, and aspirin I expect him to at least question me on my next check up in July. I do have answers that should be good enough (including results and references), but he might not think that they are good enough. I hope that he agrees with what I have been doing, but I am not sure that I can expect that. Approval would be really welcome.

If necessary I will need to choose a new doctor. It's not like I have been seeing him for a long time since I only have had three appointments.


#9

I like the idea of going over things from time to time with someone as you mention doing with someone from the insurance company. I am also thinking I will schedule an appt with another endo, but keep my next one with this endo until I see if I do any better with the new one.
With the current doctor, I feel like she isn't listening to me. To me, it almost feels like she learned from the book so to speak, and is of the mindset that this is always how things will go because that's what they taught us in school.
As an example, I logged what I ate, and what insulin doses I took along with my sugars for a week and took it all to her this past week. She wants me taking 4 units of insulin(Humalog)at breakfast, regardless of what I eat, just to cover the food, and then more as a sugar correction. My typical breakfast is pretty light, usually 2 granola bars with a total of about 36 grams of carb. For this I took 2 units and did not take a sugar correction. My sugar was at 461 before eating, and 3 hours later was at 216. That's half the insulin she wants me taking and skipping the correction. This type of drop is typical for me on my breakfast dosing, and I know to expect it. I showed her several examples of similar conditions and results, but she didn't seem interested in looking at details, and just kept repeating your sugars are too high, I have to get more insulin in you, take what I am telling you. I won't argue, my sugars are running way too high, and need to come down. Again, that is all tied to my anxiety around lows. I just don't think her approach is correct.


#10

Zoe, thank you for such a long reply. I am sorry for taking so long to reply. With my eyes where they are right now, reading and replying takes me quite a bit of time. Please don't let this limit your replies, just know I may be a bit slow to answer. Anyway, on to your questions.

As far as what I am eating, I usually stick around the same familiar foods, and know about what to expect my sugars will do based on what I eat. I have a few evil foods that I tend to avoid. Pizza is one I just can't come out the other side of with a good sugar no matter what I do. I either crash, or wind up high later. The sauce usually gives me heartburn anyway, so I just don't eat it except as the rare treat. There are a few others I can't think of off hand but if named I can say no thanks, not worth my troubles later.

My biggest obstacle to control is my anxiety. It is something I have struggled with for going on 15 years. It is strongest around a fear of low sugars, but when I get anxious about anything, my go to reaction is always where is my sugar at and can I raise it and feel better than I do now, if that makes any sense. In the past, I have tried medication, therapy, and to the extreme of a 4 month inpatient stay in a facility that managed the medical and mental health aspects of it. I was only 16 then, and had no say in the matter. Everything was locked down and managed for me, and I got control but when released, it didn't last.

I really struggle with therapy. I am not a very open person. I am usually quiet and pretty reserved. I have a hard time especially when a therapist kind of gives me the so what should we talk about. I never seem to be able to take that and lead things where they need to go. I haven't ever been to a therapist that I felt comfortable opening up to, its just not what I do. Discussing feelings for me is terribly uncomfortable. I would really like to find someone who understands the Diabetes component to this beyond seeing bad numbers and saying that isn't good. I guess someone who understands the emotions and the feelings that go along with everything and how strongly they can affect us.

So yes, for me, its not so much the mechanics of what needs to be done, but rather the emotions. I have had educators and others tell me that I should be teaching them, not the other way around. I pointed out something that was a result of a medication interaction to a therapist, and she looked it up and handed me her phone and said here, you read this, you will understand what it means better than I will. The grip of the anxiety and probably some bad habits are my biggest problems.

My doctors probably wish not testing was my problem. While not an issue at present, about 10 years ago, I had the anxiety and an OCD component to it, and was testing up to 40 times a day. I was actually being limited on how many strips I went to school with so that I would ration them out to last the day. I log using a website called sugarstats. I am a very visual person, and love how many kinds of charts they produce to show trends. I find if I let my logging slack for a day or so my control suffers a lot because I don't catch problems as they crop up, or at least in time to say tomorrow will be better.

I am very familiar with all of the various formulas and basal vs bolus and what not. These things were all new to me when I began preparing to go on the pump close to 15 years ago. At that time is when I was just becoming old enough to manage everything on my own, so I kind of learned those things as my taking the wheel of my management. I was taught these things and pumping by Gary Scheiner. I am sorry I probably misspelled his name. I consider him an excellent educator, and feel lucky to have had one on one appointments with him. I have also read some of his books since. As a side note I am not on the pump at this time.

As for trending and problem areas, I am trying to get my mornings under control right now. I wake up high every day, and come down from there. I have added a small Lantus dose at night and am increasing it a bit at a time. I can look at the charts and see it slowly helping. This split dose is something I had to do with my Lantus for good control before, and my current endo told me don't split the dose for now, but I can see I need to. I will attempt to make other improvements once I get a better handle on the mornings. I figured the start of the day can set the tone for the whole day so why not start there. It is also my worst reading of the day.

Thanks again for the long reply and for making it through this painfully long reply of my own. Haha!
I look forward to more from you.


#11

I can definitely see from your replies you know what you are doing. My guess is that you need to have the confidence you know what you're doing! Yes, of course a set dose (and no corrections??) is not the way to go. It does sound as if morning is the problem and it's almost impossible to accurately dose for breakfast and correction when you start out that high. Many of us find our usual correction factors just don't work when we get up towards 300 or higher. I also think you are probably on the money with the splitting of your Lantus dose. Have you considered going back on the pump.

With your anxiety issues and fear of lows I still think therapy is a good idea. Nobody ever feels comfortable talking about feelings at first. It takes finding the right therapist for you and then getting comfortable with them. It would be great if you could find one familiar with D issues. Perhaps your local JDRF would know someone. I also think, it would be great to connect to other Type 1's, especially in your age group. Again the JDRF is a good source. I started a group for Type 1 women with the JDRF sponsorship where I used to live and I love and miss that group! It's so nice to talk with people who really get it.