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MTNavypilot

Confused and trying to make sense of it all

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MTNavypilot

New to the forum - I apologize for the length, I guess I needed to get this off my chest.

 

OK, about me 40 yr old, 5' 10"/220. Active guy, Navy Officer, workout 2-3 times/week. My Father was diagnosed with type 2 diabetes when he was in his 40's (back in the 80s) and is currently on an insulin pump and has told me that he produces no insulin.

 

In March 2008, during my annual flight physical my FBG was high 120s. Retook the test a couple days later, fasting for more than 12 hours and waiting until almost noon to draw blood and that test came back "normal."

 

So in March 2009, when they took my FBG the flight surgeon also requested an A1C. Both came back high- FBG 127 and A1C 7.3 Prescribed 500 mg Metformin and 5 mg Lisinopril and recommended to take CoQ-10, fish oil, vitamin D, asprin (which I did.) Cut sugar completely out of my diet (had never eaten much refined sugar because of my father) and cut way down on carbs and exercised. Within 3 months lost 20 lbs and my A1C was 6.5.

 

Doc said I was doing good, but asked if I could "sustain" what I was doing. I admitted that I was pretty spartan with my diet and he recommended that I make lifestyle changes that I could sustain. So I added back in some of the carbs that I had cut out, (but still cut out refined sugar, white bread and simple carbs)

 

In March 2010 - A1C 8.2 - :eek: Metformin upped to 1000 mg

Major lifechanges/stressors at this point - 2nd son born, transfered/moved out of state.

 

At new duty station could never see the same doctor twice. Along the way got upped to 2000mg of metformin, but BG never under control. Each time new doc, would want to "see where we are today and make an appointment for next month." (4 times)

 

Finally got referred to internal medicine in February 2011. A1C 8.6 Was prescribed Janumet 50/1000 twice a day, and actos 15mg along with the lisinopril and supplements. Was basically told that type 2 diabetes is preventable and that I wouldn't be in this condition if I had taken better care of myself. Even though I had made the recommended diet and exercise changes (for the most part), I am feeling guilty because I had 3 spoonfuls of my son's mac and cheese a couple of nights prior.

 

Looking at it now, it seems bizarre and amazing that none of my military doctors have mentioned anything other than "preventable" (their word not mine) type 2 diabetes.

 

So, I return to testing my BG and counting carbs religiously. I get referred to a nutritionist. She says I should be eating less than 225 g of carbs per day. I try to explain that I am currently eating less than 180 g of carbs per day yet I am getting readings over 200. She just looks at me like "yeah, whatever" and says, "well it may take a while for your new meds to kick in."

 

After that I cut way back on carbs (less than 50 grams/day) for a couple of days and for the first time in my life I feel like a diabetic - headaches, thirst, nighttime urination and overall felt crappy. At that point I read an article on LADA or type 1.5 and I was like Ah ha! This makes more sense to me. But now I have more questions than answers.

 

At this point I have returned to exactly what the doc and the nutritionist prescribed. (225 grams of carbs and 1800 cals/day.) I feel better, but my BG meter might as well be a random number generator between 120-220. I can discern no perceivable pattern. Additionally, since Feb 11th my lowest reading has been 99 (only 2 other readings below 120)

 

I read tonight on one of the posts in the type 1.5 forum that having all highs and no lows is an indication of type 1.5. Can someone explain this more? Does the fact that I am getting no lows mean anything?

 

Should I be trying to cut down on carbs? Was the crappy feeling that I felt on low carbs just a "false low" or could it be something more? Do I need to worry about ketoacidosis? I don't even have a way to test for it at this point.

 

I am meeting with the nutritionist again on 14 March and yet another internal medicine doctor on 25 March. Should I try to get these moved up? I plan to ask that I get tested for GAD antibodies and C-peptide levels. Is there anything else that I should request?

 

Thanks for listening, any comments appreciated.

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Patriots62

MTNavy,

 

First of all, glad you joined this forum! You will find it a great source of information, support and all the experience of all other diabetics in care, treatment, and control. We are not doctors but we do like to arm ourselves by sharing information that seems to be difficult to obtain through the medical profession.

 

Now secondly, I can fully understand your frustration. I am retired AF working still within the DoD and have experienced your very same frustrations you mentioned with the military medical community. I went the route of military nutritionists (clueless), see a different military doc almost every time (most are clueless on diabetes), and ran the roller coaster ride of military support for diabetics. My conclusion--the military is seriously lagging in diabetes support and treatment and there is a reasonable answer why. Diabetics are not allowed to join the military so that area of treatment was never a concern for the military medical community other than dealing with dependent care. Even then, dependents were often referred to civilian doctors. History is now proofing the military wrong in their approach as diabetes is now becoming epedemic proportions and they are struggling with this.

 

And thirdly, I think I can safely say that you need to re-adjust your total carb intake to less than 100grams a day(225 is wayyyy too high for my perspective). Eliminate all white food groups (potatoes, rice, pastas, white breads) and focus on protiens, fats, vegs, etc. Get some reading material that will tell you how much carbs in portions for EVERYTHING you currently eat and re-assess based on your total daily carb intake. Bottom line is YOU will have to learn to live to your meter.

 

Have the docs every performed a c-peptide test? Tell them you need to be testing to see what your pancreas is producing, to see what your liver is performing, etc. Mandate a FULL battery of tests to focus your treatment. I too asked my doc on diagnosis am I a Type 2 or LADA 1.5--their response was purely "huh?". Take the time to go through all the threads here and get as much understanding of how each of us have responded to T1, T2, and 1.5. See what others have experienced in their respective processes of discovery and diagnosis. I myself, went and got an outside second opinion to clarify the LADA and no, I'm a non-typical T2. (that is another story) OOPS, never mind as I see you last paragraph states that.

 

Unfortunately know one person is really going to give you the "right" answers as many simply do not know and will often debate other answers. The bottom line is simply, as is for each of us here, we have become the experts of our own diabetes. I too felt extremely frustrated during my first six months by working with the military docs, I too felt nothing was working, and I too was becoming beat down in controlling and emotionally understanding my situation. Until I found this forum.

 

I forced the doctors to reconsider their meds prescribed to me until we got to a course correction. I went and found out what I can and cannot eat regardless of what nutritionist suggested. I learned to eat to my meter. I forced discipline into my life style to make sure I tested regularly (3x daily), exercised, and ate right. Only then did I get my A1c to reverse and get where it needs to be.

 

You are experiencing many additional factors that will impact this course of moving forward; family, relocation, work stress, etc. Do expect each of these to impact and adversely affect your diabetic control as that WILL happen. Stress plays a big role in BG numbers as it is a natural reaction within your body. But knowing and expecting that is also part of the control process. Also know that you will have ups and downs in success; we all do. Our bodies constantly change, the environmental factors change, and so forth, that will cause you take adjustments as you go down this road.

 

You mentioned the term "life style" and this absolutely correct! Diabetes is condition that can only be mentally and physically met head on by accepting that it is not an illness but a life style change. It is a stepping stone to overcome the emotional barrier of moving forward and I think you have taken that first step by understanding that.

 

Lastly, thank you for serving in our military and defending this nation. Not all people do understand that and all military members, past and present, have a kindred spirit that cannot be understood by everyone. We accept that and demand nothing in return. We ask only for respect.

 

Again, glad you joined the forum! Do keep us posted on your journey and ask away--we will always try to answer to the best of our abilities and share our experiences to move you on your diabetic roller coaster ride.

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xMenace

I recently listened to a radio interview discussing this increasing problem in armed forces. [sarcasm]You're being fed by the American Food Guide. You shouldn't complain because it looks out for your health![/sarcasm]

 

My advice is simple: cut your carbs to 30g a day and do not hold back on fats. Eat to satiety. Buy Gary Taubes' new book "Why We Get Fat".

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jenb

Hi MT - so glad you've joined us!

 

You asked if your symptoms suggested a low, and if you should be concerned about Diabetic Ketoacidosis (DKA). I think your thirst fan frequesnt urination suggest that you are running consistently very high, and yes - you need to explore additional avenues to bring your blood sugar down sooner than later to avoid DKA. It looks to me (of course, I'm not a doctor) like you may need some insulin. I do not know what the protocols in the military are but if there is any way you can be referred to an Endocrinologist to run a GAD65 antibody test as well as c-peptide I think you should push for it very persistently. You really do sound like a T1.5.

 

If you don't have a meter and strips I think you'll be doing yourself a favor to get them and test every couple of hours for a couple of days. That will give you some ammunition in your effort to get more proficient medical assistance. An A1C reflects your average BG for about 60 to 90 days, but does not capture the details, and that's where the devil lies.

 

As for diet, I agree with the suggestion to reduce or eliminate starchy carbs like rice, potatoes, pasta, onions, grains, low fat dairy, etc. and concentrate on veggies like greens, broccoli, cauliflower, eggplant, tomatoes now and then, some spaghetti squash...you get the picture. Many of us have found it helpful to keep the carb count down under 60 or 70 grams per day.

 

Please let us know how you're doing. Diabetes is confusing and can be scary, but you are not alone. We're here to help.

 

Jen

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ColePit09

From the sound of things you're headed fast towards insulin dependancy. You are probably LADA or type 1.5. Where diet and exercise don't do much for blood glucose control. Talk to your doctor about getting to see an endocrinologist. They are the ones who can better dx'd you than a PCP. All the best!

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MTNavypilot

Doug, Thanks for your thoughtful reply. To answer some of your questions for me: I have not had a Cpeptide level test yet, but I intend to request it on the 25th. It amazes me the amount of conflicting information out there and it is helpful to know that others have gone through a similar path. I will keep you posted on my journey and continue to ask questions.

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MTNavypilot

xMenace,

30g of carbs /day! I wouldn't know how to do it and I am worried about my doctors cautions about ketoacidosis. However, I do intend to cut my carbs, but in a more gradual manner. I am going to try cut 1/3 of my carb intake each week or 2. (150g this week and then down to 100g next week, then cut it down again to 65 or so and see where I am at in a month.

Greg

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Patriots62

MTNavy,

 

Do let us know the outcome of your testing after the 25th. Another option for you to consider is to get a referral for a second opinion. I believe Tricare must support that so do talk to your host base medical facility. There are also numerous suggestions throughout this forum on various reading materials and I cannot emphasize enough the value of these. As in everything we read, it must be taken with a grain of salt, but it will help you understand what your body is saying and doing with diabetes. I also highly recommend you get an eye exam--it is in fact recommended for all recently diagnosed diabetics and then a regime on follow-ups. Diabetes does affect long-term vision and A1C impacts your short term as well.

 

Lastly, do not immediately say no to 30g of carbs/day as xMenace suggests. I am not saying 30g is correct but that mental barrier is also one of the hardest things a diabetic has to overcome--the I can't do it barrier. What do you mean I can't eat this, I can't eat that, how come, why, but, but.... and so on. I know, I've and all of us have been there. You must think of it, after understanding and seeing the carbs in your normal foods, what can I substitute this with, what can I eat instead that I do enjoy, and so forth. Please don't let this barrier stop you. You may find after further testing and experimenting that you can consume perhaps 70-80g of carbs a day and be in good control. Or not.

 

I did not ask and it is unclear to me now looking through this thread but are you testing yourself? Or are you relying on the post medical facility? I strongly suggest you "fly" over to the NX (or whatever your PX is called *hehe*) and by a BG tester and supplies. I for one, purchase my supplies through AAFES and the OneTouch Ultra was $65 with 100 lancets at $10, and the OneTouch Blue test strips at $49 for 50 count. Or go down town and purchase them. But testing, testing, and testing is the key to understanding. Test before meals, two hrs after meals, write down what you ate and the test results. Test before bed and upon waking to see what your liver is doing through the night (being asleep like it should or pumping sugar into your blood all night long). Again, testing testing testing and learning. That is the biggest key to the discovery of what you can and cannot eat.

 

Again, we all hope this info helps and do keep us posted.

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MTNavypilot

Doug,

Yeah, I have a meter and I am testing just as you (and Jenb) said. Presently about 5 or 6 times a day. Like I said in my original post, the frustrating part is that my meter seems to be a random number generator (except it is always high). I am not going to immediately say no to 30g carbs per day, but I need to do more research, both reading more about diabetes and seeing how my body reacts to a very low carb diet. My first attempt was not good, but that may have been for reasons other than the diet. I just need to get a better understanding of what my body is doing. Thanks for your support.

 

Greg

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Patriots62

Greg,

What type of meter do you have and did you get test strips to calibrate it? Also with some meters you have enter a lot number on the meter based on the lot number of the test strips. Those could be causing wacky readings. Or, like me in the early phases, I was truly generating the wacky numbers. I simply did not respond at all to Metformin so moved to Glimeperide; worked wonders for me.

 

I liked your second part of your last entry and that is the respond I wanted you to reach. Learn, learn, learn and see how you respond. BINGO!!!!

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MTNavypilot

I have a precision xtra meter and yes it is calibrated with the correct lot number for my test strips. I do think it is accurate, I am just frustrated with what my body has been doing. But, today was a good day. 6 readings before meals & 2 hrs after - Highest 145/ lowest 126 - my best BG control in over a year :) So I guess I shouldn't be complaining. Perhaps I am just figuring out that 20g of this carb is not equal to 20g of that carb.

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sourland

HI,

 

I'm pretty new to all this too, but you said something that I am finding out, "I am just figuring out that 20g of this carb is not equal to 20g of that carb"

Very true...plus this carb with that protein is a whole other ballgame! Sometimes I eat a meal and think "oh **** this is not going to be good" and I get a great number! I can have pizza(all homemade, 100% whole wheat dough, very thin crust) and it does not spike me at all. On the other hand tried buckwheat waffles this weekend, and it shot up to the highest number I have seen ever!. I need to try it again with a protein.

 

I just started this book: Blood Sugar 101

It is pretty good about carbs...blog is good too.

 

I know exactly waht you mean about the meter being a random number generator! I hate that...

The Test, test, test advice is good.

Use your body as a test bed. And this is important, write down everything you eat. I use sparkpeople.com to track everything.

So eat something, test in 1 hour, then 2 then 3 and 4 if you want. You need to find out what the stuff does to you. Then if you get a high number you can look at what you ate and see maybe why. I eat leftovers for lunch nearly everyday. I was getting high numbers for several days week after week after lunch but the same meal was OK the day before for dinner. I finally went and really looked at what I ate, what I found was the days I got high numbers I had very little protein. The meat was eaten at dinner and the leftovers had little or none, just veges. Add the protein back in and then the numbers went down.

 

Its a lot of work...and it get tiring but keep at it.

 

Best,

 

Paul

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k_dub

You should ask for a couple of tests that can help determine if you are a type 1.5 or a T2. Ask for the GAD65 antibody test, the anti-islet cell antibody test and the c-peptide. T2s will typically be negative for both antibody tests and will *typically* be producing normal or excessive amounts of insulin. Type 1.5s will *typically* be positive for one or both of the antibody tests and the c-peptide will be low.

 

If no one has already recommended this book to you, check out Bernstein's "Diabetes Solution". Any diabetic will benefit from it.

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MTNavypilot

Sorry, I haven't responded earlier, but not much to tell.

 

Had my appointment with Internal Medicine and the new doctor ordered the tests that I wanted. GAD Antibodies, Cpeptide and Anti-Islet antibodies. Still haven't done the fasting draw due to work etc, but will have it done and know at next appointment 25 April.

 

He upped my Actos to 30 mg/day and my numbers seem to be a little better and by better I mean between 100 and 140. I am still never below 100. I have cut down my carbs to between 120 - 140 per day and am learning what I can and cannot eat. Had 2 "whole wheat" tortillas last night (trying a new tortilla with fajitas) that shot up my blood to 193. Ugh!! Didn't think that it would have that effect - but that has been my highest number in weeks.

 

Thanks for all words of encouragement.

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MTNavypilot

Well, I met with the doctor again and got my GAD results, etc. and it appears that I have type 2 diabetes.

 

I was a little bit surprised, but it is actually good news. It looks like my BG levels are coming down and that I should be able to maintain control without insulin - good news. :) Plus all my liver numbers and other tests were good.

 

No apparent auto-immune antibodies and fasting C-peptide was normal suggesting that I am insulin resistant rather than auto-immune. As for the numbers:

 

GAD 65 < 1.0 U/ml

Insulin Antibodies < 0.4 U/ml

Fasting C-peptide 2.84 ng/ml

Pancreatic Isle - negative

 

Still frustrated that I have the disease, but am coming to terms with it.

 

Thanks for listening.

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jenb

Great that you have a definitive diagnosis - it's always easier to deal the the known than the unkown! What is the treatment going forward?

 

Jen

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Patriots62

Greg,

 

Good to hear you got your defining results and that now you have a way forward. The means of control are now carb counting, exercise, and medication. What are you down to now on your carb count per day?

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