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My Story so far

Discussion in 'Type 1.5/LADA Diabetes' started by Iowaboy, Nov 3, 2017.

  1. Iowaboy

    Iowaboy · Member

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    Debated whether this was best for the Pre-diabetes forum or here, but since I think I fit into this category, decided to post here.

    I have had a borderline A1c for the last 3 years, 5.7 each year (upper limit for my lab is 5.6). At the time 3 years ago, I saw endo who did GTT test which was normal. They also did c-peptide which was 0.75 (low) but was a fasting value. Fasting glucose was about 80. They basically questioned why I was there, said don't worry about it, and sent me out.

    I am 6'1" and usually right around 175 pounds, and reasonable athletic shape (run 20-25 miles a week). I finally decided I wanted to do more investigation when a month ago my A1c again came back 5.7 for the 3rd year in a row. My diet was reasonably good. Water/tea only, no alcohol, felt like I ate healthy at home. However, I tended to eat larger meals at dinner, with plenty of carbs like bread, potatoes, etc. My real vice was I would go out 1-2 times a week and have a large meal or buffet. Admit I ate a lot of food during those meals - usually all you can eat sushi. To be honest, I never thought too much of it because it never affected my weight. In any case, my current fasting values are 75-80 in the morning but the A1c of 5.7 finally got to me. Once I started testing, it seems like my values peak and take a really long time to come down. For a dinner out, it would be common to peak in the 140s and still be above 100 even the next morning. Granted I was eating a large amount of food.

    So I looked back at the tests I had 3 years ago and wondered if I might have LADA with the low c-peptide level and borderline A1c. I requested further testing and received the following results a few weeks ago: GAD antibody positive at 8.5 U (5 being top normal) with negative IA2, negative islet cell antibodies, and negative insulin antibodies. Fasting c-peptide recently is 0.8.

    My assessment is that I likely have LADA, though we will see what the endocrinologist says in a week (haven't met with one yet). I suppose the other possibility is that I have become insulin resistant due to my diet, but that wouldn't explain the low fasting c-peptide and elevated GAD. I know that in other situations you can have positive auto-antibodies (like an ANA), and it doesn't have to be clinically relevant, but that A1c suggests otherwise.

    How long can this phase last? I started a low carb diet about 3 weeks ago, trying to keep total daily carbs around 100 grams. I got rid of those all you can eat meals (I do miss sushi though). I suspect was previously eating at least 250 grams a day of carbs (if not more). New diet definitely seems to help. I know many go much lower. Now my peak 1 hour glucose is around 120 or less, with 2 hour around 95-110 (or even less if I exercise). Fasting is 75-80. My running is increasing (marathon in January), and I am struggling to maintain a weight with the new diet and increased exercise (currently about 167 pounds).

    I appreciate the chance to share my story and have already learned a lot from this forum!
     
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  2. Jo_the_boat

    Jo_the_boat Type 2 · Well-Known Member

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    I'm afraid this is a bit technical for me to take in. There may be other members who can offer sensible comments.
    But what I will say is well done for trying to look after yourself so diligently. If everyone adopted even half your attitude to health and fitness we would live in a healthier world.
    Good luck with the marathon training!
     
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  3. Alexandra100

    Alexandra100 Other · Well-Known Member

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    Have you read up on LADA on Jenny Ruhl's website? http://www.phlaunt.com/diabetes/18382053.php I am another thin runner (5K rather than marathon!) and too suspect I might have LADA rather than T2. Like Jo, I am absolutely no expert, but your home testing numbers sound fine to me. My understanding is that in the case of LADA people will over a shortish time see their bg rise higher and higher for the same amount of carbs eaten. IMO seeing an endocrinologist is a good idea, as is carrying on with eating the level of carbs that is bringing you such good results. Even if we are eventually going to be diagnosed as LADA, for the moment every day with healthy bg levels is a day gained when we are not damaging ourselves.
     
  4. Bluetit1802

    Bluetit1802 Type 2 · Oracle

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    I'll tag in @Daibell who is very knowledgeable about LADA.
     
  5. Daibell

    Daibell Type 1.5 · Expert

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    Hi. I'm not an expert, but have been down the LADA route with unhelpful GPs along the way so have learned the hard way. A c-peptide result towards the bottom of or below the normal range indicates low insulin output and hence LADA becomes a possibility. Tablets such as Gliclazide can stimulate the pancreatic cells for a while but insulin is likely to be required long term. Note that there are rarer forms of diabetes but lack of insulin will normally imply tablets leading on to insulin regardless. A positive GAD normally indicates a cause of cell death; there are other causes such as viruses. My c-peptide was done privately and I was asked to fast for it; there are arguments about this. Note that LADAs can go thru a long honeymoon period. Mine was at least 5 years during which insulin output continues to decay and tablets need to be increased leading to insulin injections when HBa1C rises and tablets stop working. The general advice is to start insulin earlier rather than later; I was started too late.
     
  6. Iowaboy

    Iowaboy · Member

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    Hi all, thank you everyone for the responses and words of encouragement!
    Alexandra100: Thanks for the link, I had looked at that website but have been reading over all the information carefully there today. Lots of great info!
    Daibell, Appreciate the info! Yes, I am virtually certain this is LADA with the low c-peptide, positive GAD, and HBa1C. It's been at least three years already (since my HBa1C was 5.7 three years ago). I have read that the honeymoon period is usually less than 5 years, but for some it can be as long as 10-12 years before insulin is required. I suspect it depends on when it is diagnosed and how high antibody titers are. What I will be asking the Endo on Friday is what is the threshold for starting insulin. Is it fasting glucose? Hba1C level? Or when 1 hour post meal goes above a certain number?

    I had a really good week until tonight. No peaks above 125 that I detected. I am still testing out foods and diet, with the overall goal of staying under 100 carbs, and trying to keep 1 hour postprandial less than 120.
    Today I had 22 net carbs for breakfast, consisting of Greek Yogurt and mixed berries. 1.5 hour glucose was 89 (I couldn't test at an hour, but still was very happy with that).
    Lunch I had 23 net carbs, consistent of hummus, snow peas, and whole wheat wrap. 1 hour glucose was 103. So far so good.
    Dinner I decided to try Quinoa for the first time since the new diet. Rest of the meal consisted of chicken, asparagus, cucumber soup (homemade so very low carb), salad, and the quinoa. By my calculation was about 45 net carbs, with about 35 coming from the quinoa. One hour glucose was 152 (Double checked because I was so stunned) and 2 hour was 132. I had other meals earlier in the week with close to 40 net carbs (black bean chili), so I don't think it was the total amount of carbs that did it. Is it really possible that the quinoa had that big an effect on my blood sugar vs a food like black beans? I know that black beans have a lower GI/GL, but I didn't think it would be that big a difference. In any case, lesson learned. Bye bye quinoa!

    Sadly, my dinner experience tonight tells me my phase 1 insulin response is poor, which likely that the remaining honeymoon period may be short. Wish I had made the more dramatic diet changes sooner.
     
    • Informative Informative x 1
  7. Alexandra100

    Alexandra100 Other · Well-Known Member

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    Sorry for your disapointment. I really empathise, as very recently I've been experiencing the same sort of thing, with nice low results after breakfast and maybe lunch, but then higher numbers arriving in the evening even if I had eaten very few carbs, and very little of anything. Recently I have started following Dr Bernstein's programme of eating less carbs for breakfast and the results are good. This chimes with the experience of lots of people on here, who find they can eat more carbs later in the day. The theory is that we are usually more insulin resistant in the morning on waking and that gradually improves during the day. I have been keeping my breakfast carbs down to about 6, which takes some doing! but when I see the numbers on my meter it feels so worthwhile. You may not want / need to reduce your carbs to Dr B's 30 per day, but maybe trying out his ratio of 6 / 12 / 12 with higher numbers might give you results
     
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  8. Iowaboy

    Iowaboy · Member

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    Thanks, that advice makes sense. That's funny, I did actually open up Dr. Bernstein's book last night to check what it said about quinoa. Not surprisingly, it's on the "do not eat" list. I am really impressed that you are able to keep your breakfast carbs at 6, that's awesome! My current regular M-F breakfast is steel cut oatmeal with spinach and egg white, which is 25 net carbs. I am not quite ready to reduce that further, but I will definitely do that if this trend persists. Back at 78 fasting this morning. Time for breakfast and a new day. :) I'm curious - have you tried running longer distances and seen what it did to your numbers? Today is my long run day, and I have noticed that I get my best numbers for lunch and dinner on the day of a long run (I do that run in the morning). I don't notice that effect at the 3-4 mile distance, but it seems to help (at least for me) for any run in the 6 or more mile range. Might just be my imagination though, or my rationale for justifying longer runs.
     
  9. Alexandra100

    Alexandra100 Other · Well-Known Member

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    I just re-read your posts, and it strikes me that it may be that quinoa spikes you whereas perhaps black beans affect your bg less. Many many people on this forum report being unable to eat certain foods because they cause their bgs to rise too much. They are not the same foods for everyone, though grains do seem to be a major culprit across the board. The way to find out is, obviously, to eat the same meal again and see if you get the same sort of spike. And, given the unreliability of home tests, if you can bear it, even try it a third time, especially if the first two contradict each other.
     
  10. Alexandra100

    Alexandra100 Other · Well-Known Member

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    A person who can stomach spinach and egg whites for BREAKFAST can do anything. I am now confident that you could easily be the next president of the USA, were it not that, quite rightly, you prefer to put your energy into running. Don't forget you can eat more carbs than me, since you are male, taller, run further and, my guess is, are younger than my 75 years. Very interesting about the long run effect you have noticed. Do you eat any extra carbs before or during your long runs? I am struggling to get this right, as my running is going very badly lately (possibly due to other health problems unconnected with bg). I'm afraid even 3 miles is seeming quite long to me at present, but perhaps that will perk up as either my body gets used to functioning on such a low allowance of carbs or I learn how best to slip it the right amount of sugar at the critical moment, not too soon, not too late. Fuelling my weight training sessions at the gym is another problem I haven't cracked.

    Everyone says exercise is good for bg in the long and short term (except the people who find it spikes them, thank heaven we don't have that problem). Have you tried walking or similar for just 10-20 minutes after meals? Quite a few research studies have found this helpful, especially after the evening meal, when one can hope to help one's next day fasting numbers. I usually do it, but I can't really tell if it helps. We discussed this in a thread in the Exercise section further down.
     
  11. Alexandra100

    Alexandra100 Other · Well-Known Member

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    I just posted an important article on low carb, fasting and running in the Exercise section which I think you might like to look at.
     
  12. Iowaboy

    Iowaboy · Member

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    Yes, that makes sense about quinoa vs black beans. Fortunately, black beans seems to work, at least for now. At some point I will try the quinoa again to confirm, but I am in no rush to do that.
    Correct - I am in my mid 40's. I am training my body away from less and less carbs before and during runs. Previously, I would have a cliff bar and a banana before long runs. And would do gels during runs after about an hour. Also, during races I would drink gatorade. Crazy how many carbs that added up to. The first to go was gatorade. I actually learned I had much more consistent energy drinking water. The more I have run, the more I have become less reliant on gels. I also cut the cliff bar as well. But it took a lot of time to get used to. I am headed to Las Vegas to run the half marathon this weekend (largest night time running event in the world!). Pre-race, I will have a banana. At mile 6-8, I will have 1 Hammer Gel which is 22 grams of carbs and only 2 grams of sugar. I've come a very long way, but it took a long time to reduce the carbs needed to maintain my energy level.
    My advice is if 3 miles seems long, stick with that distance. I would recommend some carb source before starting your run. A banana works for me, but if it doesn't for you, try something else. At the 3 mile distance, I would try to avoid taking in extra carbs if possible during the run (bring them along just in case however). When you start feeling tired, slow down or walk. Your body will catch up and then you will be able to run again. Eventually your body won't depend on the carbs for the run. I will check out that article!
    Made some great food items last night. One was a cauliflower fried rice - low carb and outstanding!! The other was a edamame and ricotta cheese appetizer from the "Plenty more" cookbook. Also excellent. So low carb fortunately doesn't mean bad food.
     
  13. Alexandra100

    Alexandra100 Other · Well-Known Member

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    How was Las Vegas? A woman friend of mine age 65+ travelled all the way from the UK to run there. She thought it was worth the trip. Getting used to low carb sport is interesting. I used to eat very frequently. Now, if I feel shaky and empty I can test my bg, as I know it's more likely to be a highish than low level that is causing my sensations. I've had two good weight training sessions now without specially eating beforehand, though I did crack for cheese and walnuts after (having established my bg was OK first). Running is proving more problematic, but I fear my slow running may have other causes than low carb. I have to keep reminding myself that it's work in progress.

    BTW the sugar content shown on labels is irrelevant. What counts is the carbs, which all turn to sugar inside us anyway. One less thing to worry about!

    I like the sound of the fried cauliflower. I am slowly realising that my new topsy turvy approach to nutrition (carbs out, butter cheese and cream in) opens up all sorts of new possibilities.
     
  14. Iowaboy

    Iowaboy · Member

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    Vegas was awesome! Weather was perfect, and I finished in the top 10% so very happy with that. I made one mistake on the trip, which is the first night went to a sushi place. I had planned what I was going to eat, (mostly poke and salad), but they messed up the order and I ended up with some sushi. Figured it would be an experiment, so I ended up eating the sushi along with about a cup of sushi rice. Big mistake - similar to the quinoa, sent the blood sugar soaring and took until well into the next day before it came down. Rest of the trip was great - went to several buffets and focused on seafood, veggies, etc. No issues with those meals despite eating a lot of food.

    Saw endocrinologist on Friday, who wasn't sure what was going on. He said GAD antibodies are low, but still could be LADA. Said there wasn't much to do at this point but modify diet, monitor, and wait/see. He did advise doing a glucose tolerance test so I have that set up for next week. Should be interesting, as can't imagine what all those carbs will do - well, I think I know exactly what they will do!
     
  15. Alexandra100

    Alexandra100 Other · Well-Known Member

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    And apart from that, Mrs Lincoln, how did you enjoy the show? (ie I was amused to see you went into fascinating detail about your meals in Vegas, but never mentioned the race! How did that go?

    What you say about the endocrinologist is very helpful to me, as I had more or less decided I should save my money for later (I hope much later) when, if I am right in thinking I am Lada, my results will have deteriorated, but every so often I get the impulse to book that £200 appointment. Did you have the glucose tolerance test? Did the specialist go into any detail about modifying your diet?
     
  16. Iowaboy

    Iowaboy · Member

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    LOL, the race went very well! The weather was perfect for running, mid 60's or so. First 9 miles actually went quickly, and I was on pace to get close to a PR. However, those last 4 miles are always tough, and I think the lack of carbs in my diet took a bit of a toll. I still finished strong, and was very happy with how it went! Was a little sore the last couple of days following race, but not too bad.

    Had my glucose tolerance test today. Went about as I predicted. Wasn't happy about downing 75 grams of glucose (it's going to ruin my next A1c!) but what can you do? My fasting value was 73, and 2 hour value was 146 (so just outside 140 which is upper limit of normal). I don't think it adds much additional information - though I did request they do a C-peptide at the end of the test, as I want to see what a non-fasting value is. Will see what that comes back as. My conclusion is that things have been very slowly progressed over the last 3 years.

    I did find this cool spreadsheet which I am using to record my values. Want to see how closely it predicts my A1c.
    http://www.heinemannpage.com/Diabetes/Carbs Glucose and A1c Tracking.xlsm

    No, the endo didn't go into any specifics on diet. We do have full time nutritionists at the clinic. But he said, it sounds like you know what you are doing, so there isn't much point. :)
     
  17. runner2009

    runner2009 Type 2 · Well-Known Member

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    Hey, @Iowaboy -

    I am going into my 4th year as a 1.5 - I ended up in ICU for 5-days. Had both antibodies in my blood. I have been insulin dependent and with careful following as close to Dr. B's protocols ( just more veggies and less protein ) and measuring my glucose 4 to 6 times a day and exercise, I've been able to keep my A1C between 4.8 and 5.3 - For me and others alcohol drives my BG down dramatically - even higher alcohol percentage of pints of craft beer - but of course for me this leads to overeating.

    After reading this thread here are my thoughts:

    1. The A1C doesn't necessarily accurate as one a test and there can be a 1/2 percent error in the test itself
    2. Also, individuals life span of their hemoglobin cells can range from 80 to 160 days or so ( not sure of these numbers are exact but there is a variability ).
    3. If you listen to Dr. B's podcast he believes a normal A1C should be in the 4.2 to 4.8 range
    4. You can do your own glucose tolerance test by drinking 75g of glucose water tablets and measure your blood glucose every 15 to 30 minutes ( to help smooth out the error % ). I start at 5am and read until 9am - going out further than the normal 2-hours in my case was very enlightening - I try and do my own once every quarter.
    5. Is there a history of diabetes in your family?
    6. I've looked into the diets of Dr. Bs, Dr. Ornish , the traditional Japanese diets etc ... and one thing that stands out especially in Dr. Bs and Dr. Os case they are really not so much low fat diets or low carb diets as they are low calorie diets and some would even say very low calorie diets. I think this is one of the keys that is really missed by us diabetics.
    7. I've been using smart watches for my running and I believe that for many of us the Basel Metabolic Rate BMR is way too high - mine is over 2,000ca and from checking at it it is about 500 to 600 calories too high. But if I am eating between 1,400 to 1,600 calories a day - with no exercise - I am hungry all the time.
    3-weeks ago, my brother who is in his mid 50s, fit, no fat, takes statins, baby aspirin for the last 15-years. He is a marathon swimmer and long distance bike rider, survived a massive heart attack with a triple bypass. One major artery was 100% plugged - the week before he had raced a 400-mile bike race - and the others were 60% to 75%. The question was how could this be?

    The cardiologist said that as we age, we should all assume we have at least one artery plugged and manage your life as if you did have one.

    I think that this is a good strategy when it comes to diabetes. Assume that as we age we have increasing metabolic syndrome, decrease in our ability of our beta cells to function correctly, of course exercise ( have your read what Dr. B has said about it?) and most importantly, cut down on the total calories we eat each day.
     
  18. Alexandra100

    Alexandra100 Other · Well-Known Member

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    Hello, very interesting and thoughtful post. I am another enthusiast for Dr B. I also appreciate Jenny Ruhl, but I find her totally inadequate on exercise, so it was a great pleasure to read Dr B's book and find him so very enthusiastic about it. Over less than 3 months I have been gradually learning about all this and lowering my carb intake, but it was only when I gave in and adopted Dr B's strategy of only 6g carbs for breakfast that my results really began to shape up. I have a long way to go still, and as I am extremely skinny I may be LADA, in which case my results will eventually deteriorate despite my best efforts.

    I'm a bit worried by your suggestion that we should behave as if we have blocked arteries. Does this mean no intense exercise?
     
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