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Old 12-05-2017, 12:39 PM   #31
Ronnie51
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I'm glad your sugar readings and A1c are doing better, Anne. It bothers me how doctors shrug things off when they don't know the answer; if you're 1.5 and not 2, that's a big difference as one is autoimmune and one isn't. I would imagine any endocrinologist that treats Type 1 also treats Type 1.5 since the treatment is pretty much the same and that's insulin. With 1.5 you may get away with other meds for a while, but eventually you would have to go on insulin. Another term for 1.5 is "Latent Autoimmune Diabetes of Adults" (LADA), so it's the same as Type 1, but just shows itself later in life. Maybe you can find reviews online for other endocrinologists in your area if you don't really like the one you're seeing now. Problem is, sometimes it takes months to get in to see one, especially if they're good. Good luck with everything, Anne!
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Old 12-05-2017, 05:53 PM   #32
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Type 1.5

Ronnie, thank you for your great response! Today my blood sugar was pretty good, but this is only by doing very low carb and the insulin shots every night (Tresiba 14u).

Thank you for telling me that an endocrinologist who treats Type 1 may also treat Type 1.5. A friend told me about the endo specialist she goes to get her 'insulin pump' for her Type 1, so might call that doctor. She said because of being on this pump she can now eat what she wants. The GP I'm going to said that being Type 1 and on the insulin pump and thinking that he or she could then eat what they wanted isn't the way to go either, as it's a 'false sense of security' and it won't have a good outcome.

Another thing wanted to mention is that as far as I know no one else in my family ever had Type 1, only Type 2. My dad, some of his sisters and his mother all had Type 2 and they lived to their late 80's, and some into their early 90's despite the fact. This might be what throws the NP at the endocrinologist's office off, that it's just me w/this problem w/blood sugar readings all over the place for eating carbs in even small amounts.
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Old 12-06-2017, 09:51 AM   #33
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The GP I'm going to said that being Type 1 and on the insulin pump and thinking that he or she could then eat what they wanted isn't the way to go either, as it's a 'false sense of security' and it won't have a good outcome.

I agree with this statement, Anne. I feel that any diabetic, 1 or 2, should limit carbs and only take insulin or meds to control blood sugar beyond that. I really don't understand a few things you have been told, but I don't like to comment because I don't know enough about it other than my own circumstances.

I am like you, that I am very carb sensitive, an can only eat them in small quantities, but I don't consider myself anything other than type 2.
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Old 12-09-2017, 10:41 AM   #34
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Why would that doc recommend bananas and apples? Two very high sugar fruits. IMO, best to stick with a half-cup berries per day max.

A half cup blueberries contains 9 net carbs. Bananas and apples are north of 30, IIRC.
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Old 12-09-2017, 04:10 PM   #35
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Why would that doc recommend bananas and apples? Two very high sugar fruits. IMO, best to stick with a half-cup berries per day max.

A half cup blueberries contains 9 net carbs. Bananas and apples are north of 30, IIRC.
Susan, most doctors and diabetes educators don't think along those lines. They are more concerned with what meds you should be taking to control your blood sugar levels, and don't seem to give a thought to what you should be eating.

Having said that, it is not my intention to tell anyone to do anything other than follow their doctor's orders...........
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Old 12-09-2017, 04:57 PM   #36
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Not really on topic, but a couple of years ago my doctor removed me from my BP meds that were working for me and put me on an expensive new drug that drove my BP up. I asked him to please put me back on my old meds. No, he added more drugs until he had me on SIX blood pressure meds!!! I begged him to PLEASE let me go back on my meds and he finally did. I have no doubt he was getting paid from the drug company to prescribe that expensive drug. I remember waiting in his office while drug reps...with boxes of donuts in hand or equivalent....went in to see him one after the other while his patients sat out in the waiting room. Sorry, off topic. But I have learned that following doctor's orders is not always the way to go, unless you have 100% total trust in him or her that his main concern is your welfare....or that they know what they're talking about. This is the doctor who told me that shredded wheat is fine to eat because it has no sugar. The fact that it has 45g of carbs per serving eluded him. Carol....I sense there is facetiousness in your post :-)Okay, back to topic. Sorry.

Last edited by Ronnie51; 12-09-2017 at 05:00 PM..
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Old 12-10-2017, 08:41 AM   #37
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Ronnie, you are very perceptive! I always like to leave a disclaimer when I give medical opinions so no one can say I led someone down the wrong path. What I post is only MY opinion. LOL
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Old 12-12-2017, 08:59 AM   #38
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Yesterday (Mon) talked to this GP again, he said to fix my problem w/lows in the a.m. I must eat earlier in the a.m. upon getting up (which is difficult for me as am never hungry, but HAVE to ugh), not miss meals, also to have some (low carb) snacks during the day to keep the sugar better regulated. One other thing: have some cheese before going to bed.

Reason for my concern was that my meter readings a few days ago were coming down in the 50's-60's, told him.

A couple of nights did have some cheese before heading to bed and the readings were much better in the a.m., so can see he's correct in telling me to do that (so will continue to do that more regularly and REMEMBER that helps). Learning experiences! lol But the eating in the a.m. is going to be the hard part...usually am not hungry until more mid-day.

Tomorrow have an appointment to go see a heart specialist -- am hoping he can help me with the nasty water retention problem I had, which is what had landed me in the hospital back in October (and has resulted in numerous visits to other doctors/surgeon's offices. blech)

But! as some (from their comments) seem they might agree with, this GP could update his 'carb info' for ones like us who can't handle any little bit of carbs! (The endocrinologist 'specialist' and her NP were more eager to hand out drugs rather than help nutritionally, so at least my GP is way better in that regard.)

Thank you everyone for your comments again -- it's so great getting all the input on experiences had with diabetes and carbs (and on blood pressure meds) and helps me a LOT.
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Old 12-13-2017, 10:36 AM   #39
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Anne, maybe eating the cheese at bedtime will correct the AM lows and you won't need breakfast. I think I would try that first. Or maybe you would just need a small snack instead of a full meal. This is not a typical diabetes issue I don't think. It's more like hypoglycemia. Is this part of 1.5? My blood sugar continues to rise a bit after I get up, whether I eat or not.
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Old 12-13-2017, 10:55 AM   #40
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I just read back on some of your older posts that you are taking insulin at night. Maybe you are taking too much and that is causing the AM lows. And your doctor took you of the Met. Well, Met does not lower blood sugar but insulin does. Do you ever wake up during the night, like around 3 or 4? If you do, try testing at that time and see what it is. This is the time when most diabetics have their lowest reading, and then the Dawn Phenomenon take over and starts to raise it. The insulin you take may be interfering with that. So you are taking insulin to keep your blood sugar low, but then eating a snack at bedtime to keep it from going too low. That doesn't make sense to me, but there's probably a reason for it that I don't know about.
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Old 12-15-2017, 09:03 PM   #41
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More fun with diabetes

Carolsue, thank you for your great comments! and yes am taking Tresiba 14u at night and you are right -- none of this makes any sense.

As mentioned the GP didn't change my insulin as of a couple weeks ago (this when seeing the results of that patch/meter he had put on my arm for 8 days that monitored my blood sugar levels). (The insulin was what was prescribed thru the endo specialist NP many weeks ago, then because I wasn't going low enough at least to her liking, she was going to put me on Met500 (which was what the GP told me not to take). I had said something to the GP about perhaps lowering the insulin but for some reason he didn't, just told me about eating something before going to bed so it wouldn't go way too low for in the a.m. As you also mentioned, eating cheese at night seems to work out well for me, so will continue doing that -- and I'm trying to get into the routine of eating earlier in the a.m. too. (Which is difficult as am not all that hungry in the a.m.).

And now for more complications. lol When going to the heart specialist on Wed, he said he didn't see my creatine level was a problem (tho mentiioned to him that my GP does see it as a possible problem and feels it could cause me a bad kidney problem down the road). No, he says, my creatine is fine. The ob-gyn surgeon said 2-3 wks ago at that appoint. that my creatine was a little on the high side but not a concern -- yet he wants me to have an ultrasound of my uterus in Feb to make sure it's not pressing against my kidney more as it's already doing this a little (if it shows up as a problem I'd have to have a full hysterectomy), for now it's a waiting game. We believe I've had this super enlarged uterus a LONG time, so was glad that the ob gyn doc said I could opt for doing nothing (at least for now).

Also the print out received from the heart doc on Wed mentioned that my C-Peptide level was low -- the endo NP and the GP both said my C-Peptide was okay. Maybe it fluctuates? That will make it even more difficult to figure out, but would that be a sign I'm a Type 1.5 and not a type 2 if C-Peptide is low? The GAD blood work was okay as well. I will have to call the heart doc's NP and find out when this C-peptide was reported as low (this because both the NP at the endo's office and my GP had me get blood work also, and those might have shown a different C-Peptide number as may have been more recent).

The GP said a person can go up to 180 in their meter reading and it's still considered 'ok' (not sure where he's getting that figure from, think it was from some diabetic association's information he uses) ...I usually run around 160-170 for a high 2 hours after eating then go down again eventually to around 140. I will do what you mentioned, Carolsue, and take my BS around 3 in the morning and see what it is.

This morning my bg was 98 and just now (10:30 p.m.) it was 165 (but this was over 4 hours after eating (was gone most of the day and didn't take my reading at 2 hours after a meal as I usually do). Too many raspberries 'done me in.'

The GP said not to miss meals (another hard thing for me as I am not one to be that rigid about when I eat but know I should be.

Thank you for the great suggestions, Carolsue!

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Old 12-16-2017, 02:47 AM   #42
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Anne, your case is very confusing. It really sounds as if the different doctors are contradicting each other. As I understand it, if you GAD is good and the C-peptide is good, then you are not type 1.5, but that's just from what I'm reading on the internet, not from any actual knowledge, so don't change anything based on this. I think that needs to be addressed, if you are type 1.5 or type 2, and then go from there as far as treatment is concerned.

It has always been my understanding that the snack before bed and eating regularly is aimed at type 1 diabetics who are on insulin, to prevent hypos. So if you are really 1.5, that is similar to a type 1 whose body does not have enough insulin, so I think this would be the correct treatment.

But if you are type 2, I think you should be allowed to try managing it with diet and exercise before using meds, and even then, insulin would not be my first choice. I can only speak for myself, but adding more food is not the answer. Too much food and eating when I'm not hungry is what got me where I am today and I don't think it's the answer to type 2 diabetes.

There is a big debate as to whether we should "not miss meals" or "only eat when we are hungry." I think it depends on whether you have a medical condition that is affected by regular mealtimes.

If it was me, I would want someone to address the diagnosis once and for all by reviewing the results of the tests, and then proceed with treatment accordingly. If it is type 2 and not 1.5, I would start all over with a clean slate, try to manage it with diet and exercise, and then add meds if necessary. Just my choice.

Different diabetes organizations have different guidelines for what your top blood sugar reading should be, that's why some doctors say not above 180 and others say never above 140. Just depends on who they are agreeing with.

I do hope you get all this straighten out soon, Anne.
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Old 12-16-2017, 05:46 PM   #43
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Carol, thank you so much for responding to my dilemma! Will be doing some more research (and no doubt this will take a while) and hope to find someone who actually treats 1.5 in our area. Again, thank you for the suggestions and input!
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Old 12-19-2017, 03:05 AM   #44
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Hi there! Im so sorry to intrude on your conversation, but I just wanted to mention that there is a rare form of Type 1.5 called MODY. Your GAD antibodies would be negative and your C-peptide would be low. I have that- dx 7 years ago. It is very difficult to dx because it is uncommon and doesn't follow any trends. Sometimes high fasting, sometimes low, sometimes perfect.
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Old 12-19-2017, 03:06 AM   #45
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Hang in there though- you're doing a great job!
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Old 12-19-2017, 07:41 AM   #46
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Hi there! Im so sorry to intrude on your conversation, but I just wanted to mention that there is a rare form of Type 1.5 called MODY. Your GAD antibodies would be negative and your C-peptide would be low. I have that- dx 7 years ago. It is very difficult to dx because it is uncommon and doesn't follow any trends. Sometimes high fasting, sometimes low, sometimes perfect.
I have heard of this but don't know anything about it. Is there an average age that it usually develops? If fasting is sometimes low or normal, how is it detected? Through a high A1c? Since GAD antibodies are negative, is this still an autoimmune disease?
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Old 12-19-2017, 08:23 AM   #47
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It is usually detected later in life: ages 30-50 ish, slender-body type. No antibodies so likely not autoimmune. There is a lot of research being done on it now- so they are learning new things every day. It is a genetic form that is autosomal dominant, but it may present differently in each person/generation (different degrees of severity). There are multiple types. Some present with higher fastings, some with higher A1cs. The progression varies also- so some need insulin sooner and some can manange with diet for longer periods of time.
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Old 12-19-2017, 08:41 AM   #48
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Thank you, ascole. This blood sugar thing is all very complicated.
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Old 12-19-2017, 10:32 AM   #49
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Indeed, it is! I googled and read about MODY but didn't really understand it.
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Old 12-19-2017, 12:12 PM   #50
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It is so complicated! There are just so many factors to consider- and everyone is slightly different- not cut an dry. It is so important to be your own researcher and advocate!
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Old 12-19-2017, 12:28 PM   #51
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It is so complicated! There are just so many factors to consider- and everyone is slightly different- not cut an dry. It is so important to be your own researcher and advocate!
I totally agree with you. I just wish my sister would do this.
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Old 12-21-2017, 12:12 PM   #52
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Ascole, thank you for adding to the conversation -- don't apologize! Just read through your and some others' comments on this, and, yes, will have to do yet more research. This ought to throw all my 'health' people into a tizzy as some didn't seem to be able to handle the LADA.
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