trying to figure out how I feel about my endo appointment; next steps

[erin40]

Hello everybody.. Hope you are doing well.

I am feeling stressed out about my endocrinology appointment earlier today. I have a possible LADA that has not been diagnosed. Highest sugar, 12.7 three hours after eating. Slow healing cuts, and some other signs. My anti-GAD was negative eight months ago and has not been retested. Fasting C peptide was exceedingly low (as was insulin level), but these apparently are not predictive of anything on their own. I have not and am not doing the OGTT (have discussed this on another thread), and glucose testing in the clinic on a low carb diet has been normal. Anyway, I cannot eat any starches except for barley without feeling 'sick,' but endo told me to stop testing my sugar so I don't know what my sugar levels are when I feel like that. The feeling is like I've eaten something too sugary, and I am jittery & need to go for a run to clear the sugar out of my system.

I had the appointment with my endocrinologist's fellow and he asked me, among many other things, about my mood. I disclosed that I have anxiety. I then immediately realized that I probably shouldn't have said that, because the minute you disclose something mental health-wise it can be used to say you are imagining your symptoms (as if people with anxiety don't get medical health problems that need medical attention). This was exactly what happened. The main endocrinologist was like, we'll refer you to GI and psychiatry, but you have no diabetes problem. I strongly disagree with this assessment, although I concur that the problem does not currently need intervention, e.g. insulin. I simply am avoiding the foods that I can't eat (bread, pasta, anything high glycemic). Hence why my blood sugars are normal.

I asked if I could phone her clinic back if I had problems moving forward with my blood sugar, or do I need to start all over again at the walk in clinic? (I don't have a family doctor.) She was basically like, start all over. Don't bother the clinic. I find this upsetting and unprofessional, because I have had diabetic crash-type experiences in the past where I feel like I can't eat anything, and it's scary. I can't be waiting five months to see a doctor and be given the run around about even getting the referral, as happened last time. So I basically got off the phone and was feeling lousy. Additionally, I did not want these other referrals and especially the psych one from this doctor who was discrediting me. (Though I DO have anxiety, and ordinarily would welcome this referral.)

Then, two hours later, the fellow called (the other doctor, who was working with her) from an un-marked phone line. He said he was very sorry for his colleague's behaviour and demeanour and thought she had been extremely rude; was there anything he could help me with? Thank god he called. I was feeling very upset, so it was validating. I just went over with him why I think I may have LADA, (or some form of still mild insulin-deficient diabetes), despite the lack of blood test evidence, and what the things are that I have been doing to help, diet-wise and so on. He agrees with me that he thinks I may have it based on my description of my symptoms. He thinks that the things I am doing may not only be keeping the problem hidden from detection, but they also may be helping the problem itself. This is exactly what I hope has been happening, and the idea that I have been proceeding on, in my thinking about my health. So I was grateful that this person thought so too, and that what I am saying makes sense.

My worry now is, do I keep these other referrals or not? I was in the middle of writing an email to the endocrinologist cancelling the referrals, because I don't feel comfortable being involved in a health care interaction in which I am just being discredited. It feels gross, corrupt, and unhealthy. But then the other doctor called me, stuck his neck out, and validated my thinking and view of things. So I don't know if that makes the whole interaction acceptable and I can just move forward with the referrals, without it being a gigantic drag & relinquishing of personal integrity. E.g., if I accept the referral for my anxiety, it feels like I am accepting to say that my assertions about my very real blood sugar problem are in my head and a figment of my imagination. Yet I know that it's real. Yet, also, I really could use, probably, a referral for my anxiety, in addition to anything that has to do with blood sugar problems. (Naturally, this doctor's behaviour itself is not helping my anxiety, and she clearly also has some sort of anxiety or control-type issues of her own.)

What a mess. I am inclined to say screw it and cancel the whole thing. But this other junior doctor was so kind and went out on a limb for me. So part of me thinks I should just take that kindness and let it be enough to settle my frayed nerves, and bruised ego (I suppose), and go ahead with the referrals.

I don't know why health care has to be so harming, so much of the time. Then there are people who try to mitigate that harm. I don't know which picture of the system to believe in, the one that's trying to help, or that is quite happy obliviously doing harm.

~ Feeling frustrated, thankful & mad, all in one ~


Thanks for reading. Hope your health care interactions are more positive & stress - free, or at least neutral.

 

[Hertfordshiremum]

Hello everybody.. Hope you are doing well.

I am feeling stressed out about my endocrinology appointment earlier today. I have a possible LADA that has not been diagnosed. Highest sugar, 12.7 three hours after eating. Slow healing cuts, and some other signs. My anti-GAD was negative eight months ago and has not been retested. Fasting C peptide was exceedingly low (as was insulin level), but these apparently are not predictive of anything on their own. I have not and am not doing the OGTT (have discussed this on another thread), and glucose testing in the clinic on a low carb diet has been normal. Anyway, I cannot eat any starches except for barley without feeling 'sick,' but endo told me to stop testing my sugar so I don't know what my sugar levels are when I feel like that. The feeling is like I've eaten something too sugary, and I am jittery & need to go for a run to clear the sugar out of my system.

I had the appointment with my endocrinologist's fellow and he asked me, among many other things, about my mood. I disclosed that I have anxiety. I then immediately realized that I probably shouldn't have said that, because the minute you disclose something mental health-wise it can be used to say you are imagining your symptoms (as if people with anxiety don't get medical health problems that need medical attention). This was exactly what happened. The main endocrinologist was like, we'll refer you to GI and psychiatry, but you have no diabetes problem. I strongly disagree with this assessment, although I concur that the problem does not currently need intervention, e.g. insulin. I simply am avoiding the foods that I can't eat (bread, pasta, anything high glycemic). Hence why my blood sugars are normal.

I asked if I could phone her clinic back if I had problems moving forward with my blood sugar, or do I need to start all over again at the walk in clinic? (I don't have a family doctor.) She was basically like, start all over. Don't bother the clinic. I find this upsetting and unprofessional, because I have had diabetic crash-type experiences in the past where I feel like I can't eat anything, and it's scary. I can't be waiting five months to see a doctor and be given the run around about even getting the referral, as happened last time. So I basically got off the phone and was feeling lousy. Additionally, I did not want these other referrals and especially the psych one from this doctor who was discrediting me. (Though I DO have anxiety, and ordinarily would welcome this referral.)

Then, two hours later, the fellow called (the other doctor, who was working with her) from an un-marked phone line. He said he was very sorry for his colleague's behaviour and demeanour and thought she had been extremely rude; was there anything he could help me with? Thank god he called. I was feeling very upset, so it was validating. I just went over with him why I think I may have LADA, (or some form of still mild insulin-deficient diabetes), despite the lack of blood test evidence, and what the things are that I have been doing to help, diet-wise and so on. He agrees with me that he thinks I may have it based on my description of my symptoms. He thinks that the things I am doing may not only be keeping the problem hidden from detection, but they also may be helping the problem itself. This is exactly what I hope has been happening, and the idea that I have been proceeding on, in my thinking about my health. So I was grateful that this person thought so too, and that what I am saying makes sense.

My worry now is, do I keep these other referrals or not? I was in the middle of writing an email to the endocrinologist cancelling the referrals, because I don't feel comfortable being involved in a health care interaction in which I am just being discredited. It feels gross, corrupt, and unhealthy. But then the other doctor called me, stuck his neck out, and validated my thinking and view of things. So I don't know if that makes the whole interaction acceptable and I can just move forward with the referrals, without it being a gigantic drag & relinquishing of personal integrity. E.g., if I accept the referral for my anxiety, it feels like I am accepting to say that my assertions about my very real blood sugar problem are in my head and a figment of my imagination. Yet I know that it's real. Yet, also, I really could use, probably, a referral for my anxiety, in addition to anything that has to do with blood sugar problems. (Naturally, this doctor's behaviour itself is not helping my anxiety, and she clearly also has some sort of anxiety or control-type issues of her own.)

What a mess. I am inclined to say screw it and cancel the whole thing. But this other junior doctor was so kind and went out on a limb for me. So part of me thinks I should just take that kindness and let it be enough to settle my frayed nerves, and bruised ego (I suppose), and go ahead with the referrals.

I don't know why health care has to be so harming, so much of the time. Then there are people who try to mitigate that harm. I don't know which picture of the system to believe in, the one that's trying to help, or that is quite happy obliviously doing harm.

~ Feeling frustrated, thankful & mad, all in one ~


Thanks for reading. Hope your health care interactions are more positive & stress - free, or at least neutral.

Sorry to hear you are having such a rubbish experience It’s up to you but I would probably let the dust settle, see what referrals arrive in the post, you could always then look the consultants up and make a more informed decision later. You can always cancel later too.

 

[coby]

Hello everybody.. Hope you are doing well.

I am feeling stressed out about my endocrinology appointment earlier today. I have a possible LADA that has not been diagnosed. Highest sugar, 12.7 three hours after eating. Slow healing cuts, and some other signs. My anti-GAD was negative eight months ago and has not been retested. Fasting C peptide was exceedingly low (as was insulin level), but these apparently are not predictive of anything on their own. I have not and am not doing the OGTT (have discussed this on another thread), and glucose testing in the clinic on a low carb diet has been normal. Anyway, I cannot eat any starches except for barley without feeling 'sick,' but endo told me to stop testing my sugar so I don't know what my sugar levels are when I feel like that. The feeling is like I've eaten something too sugary, and I am jittery & need to go for a run to clear the sugar out of my system.

I had the appointment with my endocrinologist's fellow and he asked me, among many other things, about my mood. I disclosed that I have anxiety. I then immediately realized that I probably shouldn't have said that, because the minute you disclose something mental health-wise it can be used to say you are imagining your symptoms (as if people with anxiety don't get medical health problems that need medical attention). This was exactly what happened. The main endocrinologist was like, we'll refer you to GI and psychiatry, but you have no diabetes problem. I strongly disagree with this assessment, although I concur that the problem does not currently need intervention, e.g. insulin. I simply am avoiding the foods that I can't eat (bread, pasta, anything high glycemic). Hence why my blood sugars are normal.

I asked if I could phone her clinic back if I had problems moving forward with my blood sugar, or do I need to start all over again at the walk in clinic? (I don't have a family doctor.) She was basically like, start all over. Don't bother the clinic. I find this upsetting and unprofessional, because I have had diabetic crash-type experiences in the past where I feel like I can't eat anything, and it's scary. I can't be waiting five months to see a doctor and be given the run around about even getting the referral, as happened last time. So I basically got off the phone and was feeling lousy. Additionally, I did not want these other referrals and especially the psych one from this doctor who was discrediting me. (Though I DO have anxiety, and ordinarily would welcome this referral.)

Then, two hours later, the fellow called (the other doctor, who was working with her) from an un-marked phone line. He said he was very sorry for his colleague's behaviour and demeanour and thought she had been extremely rude; was there anything he could help me with? Thank god he called. I was feeling very upset, so it was validating. I just went over with him why I think I may have LADA, (or some form of still mild insulin-deficient diabetes), despite the lack of blood test evidence, and what the things are that I have been doing to help, diet-wise and so on. He agrees with me that he thinks I may have it based on my description of my symptoms. He thinks that the things I am doing may not only be keeping the problem hidden from detection, but they also may be helping the problem itself. This is exactly what I hope has been happening, and the idea that I have been proceeding on, in my thinking about my health. So I was grateful that this person thought so too, and that what I am saying makes sense.

My worry now is, do I keep these other referrals or not? I was in the middle of writing an email to the endocrinologist cancelling the referrals, because I don't feel comfortable being involved in a health care interaction in which I am just being discredited. It feels gross, corrupt, and unhealthy. But then the other doctor called me, stuck his neck out, and validated my thinking and view of things. So I don't know if that makes the whole interaction acceptable and I can just move forward with the referrals, without it being a gigantic drag & relinquishing of personal integrity. E.g., if I accept the referral for my anxiety, it feels like I am accepting to say that my assertions about my very real blood sugar problem are in my head and a figment of my imagination. Yet I know that it's real. Yet, also, I really could use, probably, a referral for my anxiety, in addition to anything that has to do with blood sugar problems. (Naturally, this doctor's behaviour itself is not helping my anxiety, and she clearly also has some sort of anxiety or control-type issues of her own.)

What a mess. I am inclined to say screw it and cancel the whole thing. But this other junior doctor was so kind and went out on a limb for me. So part of me thinks I should just take that kindness and let it be enough to settle my frayed nerves, and bruised ego (I suppose), and go ahead with the referrals.

I don't know why health care has to be so harming, so much of the time. Then there are people who try to mitigate that harm. I don't know which picture of the system to believe in, the one that's trying to help, or that is quite happy obliviously doing harm.

~ Feeling frustrated, thankful & mad, all in one ~


Thanks for reading. Hope your health care interactions are more positive & stress - free, or at least neutral.

Accept the referrals but write a complaint to the Practice Manager about how you were treated perhaps? You are eloquent with words and make the point definable.

 

[Dark Horse]

You come across as very anxious in your posts. While there's no excuse for rudeness, it may be difficult for the consultant to pick out the relevant information from all the other information included you have incuded due to worry. For example, in another thread you said that you wouldn't do an OGTT because it would harm your pancreas (it won't) and that you were experiencing delayed wound healing (this only occurs when there has been poorly controlled diabetes for some considerable length of time, not when someone is uncertain as to whether they are diabetic) and it's things like this that would make your consultant suspect a problem with anxiety rather than diabetes. In a previous thread, tou also said that you'd had a blood glucose of 12.7 on just one occasion and this isn't enough to diagnose diabetes.

The easiest way to see what's going on is to eat a normal diet for 3 months then get an HbA1c done. If it's raised and a repeat test also shows it to be raised, then you will be diagnosed with diabetes. I suspect that you would be quite worried about doing this so, as a safety net, you could get some urine dipsticks and test for glucose in the urine on a regular basis (maybe twice a week). If you did have diabetes and it was beginning to get out of control, it would be picked up at an early stage by if glucose is detected in your urine. If you get 2 positive dipsticks in a row (a second test is needed to confirm the first test) then you should see your GP. In the mean time, that referral for anxiety might be helpful.

 

[erin40]

A clinician went out of his way to phone me to say his colleague was unreasonable. You were not even there, and are I am assuming not a doctor, and yet you read the word 'anxiety' and that I made my own decision about the glucose tolerance test, and think it's sufficient to conclude that I am unreliable and the issue is my anxiety. Thank you for providing a perfect example of mental health stigma.

Thanks, hertfordshiremum and coby for your helpful thoughts.

 

[Daibell]

Hi. I've also found it very difficult to have my diagnosis confirmed as LADA even though I meet all of the criteria but my C-Peptide is just above the T1 range. Diagnosis varies a lot by area teams. All you can do is ensure you have the right insulin regime and the rest such as diet etc is up to you.

 

[erin40]

Hey, Daibell. Yeah, it's frustrating. The clinics seem set up to do T1 and T2, and anything that falls outside of that is off their radar. Agree that all you can do is ensure you have the right insulin regime and diet and the rest is up to you.

Well, I resolved the issue. I've cancelled the referrals. I think it's the right move based on the relief I feel having it off my chest. All in all, I guess I got the health care I needed in a way, since I was able to talk to that other doctor and hear that he thinks I likely have the correct thought about what is going on, and also I went over with him my turmeric and fasting as things I am doing to help keep the issue at bay, and how those are working so far (which is, great). He hadn't heard of these things, but was quite interested, so at least I was able to kind of go over with someone / a Dr. what my plan is, in the end, and hear that it makes sense. Other than that, it seems I don't really need the hospital right now; hopefully I can keep it like that.

Thanks everybody for your comments