Hi! I apologize in advance for the length of this post, but you guys seem like a gold mine of information and experience. I've already learned a lot reading through the forum and researching. I feel compelled to lay it all out here in the hope that you all will be kind enough to answer some of my questions, even if they seem silly :-)
I'm a 33 year old woman dx'ed 2 weeks ago. I'd been in a bad state for months. I was exhausted, achy, loopy, cranky, with loads of fluid in/out, ravenous hunger, boils, abscesses, colds/flus, blurry vision, headaches, high body heat, super dry skin, and recently, yeast that won't stay gone. I'd also lost about 20lbs while eating massive amounts of food. I thought that part was a miracle, ha!
Q- Are all these symptoms common? Will they all go away when my bs is more normal? Any tricks on dealing with these issues?
I finally saw my GP, but he wasn't really concerned and didn't get any tests done. Luckily, I had an obgyn appt soon after, and she agreed to do blood work. I was surprised to get a call from her early the next am. She told me I had severe diabetes and that she'd made an urgent appt with an endo for me that day. She's awesome! My blood sugar was about 500, and my A1c was 11.8.
Q- How dangerous was it to go around like this? What would've happened if I hadn't gone to that dr? Do you think it's likely my body was damaged from having my bs so high for possibly months?
At my appt with the endo, I was given a novolog pen, 70/30 mix, and a glucose monitoring kit. My instructions were to test and inject 10 units 3x/day before meals with 60-85 carbs each. My bs stayed in the 400's.
My next appt a few days later covered more information and answered some questions, and I was put on a schedule to slowly increase my dosage to bring my bs down. Blood was taken for a lipid panel, metabolic panel, and antibodies.
Over the next 10 days, my bs was between 250-400 while I ratcheted up my insulin to 20 units 3x/day. My thirst is less, but I still feel like a mummy... dried up! My infections are gone, but I must take diflucan every 4 days to keep yeast away. I swelled about 10lbs so far and have a constant headache. I still get loopy, hungry, and super tired. Exercise (even heavy housework) makes me feel AWFUL.
Q- Is it normal to still have these symptoms? Will this all stop once my bs are under a certain #? If so, at about what #? What's causing the headache? Will anything make it go away?
My last (3rd) appt was yesterday. My endo dx'ed me as having type 1 due to the presence of GAD antibodies (8.1 U/mL) and the way I presented. I'm still surprised that it's not type 2, I didn't even know that adults can just suddenly have type1 D before all this! I was negative for the other antibodies. I switched to 4 meals/day (and 20 units novolog mix before ea meal) with a goal of 50 carbs/meal. Told to only test before each meal.
Q- Is there any way it's not type 1? Are there any other tests that could give more insight, or a possible change in dx? Is there anything I should ask my dr to change his instructions on? Is there anything else I can do right now to improve my progress?
I'm concerned about my other test results. Dr. says it's likely all from the high bs, but I can't find much info on internet searches.
My microalbumin was high (28 ug/mL, normal 0-17), and the microalb/creatine ratio followed suit (69.5 mg/g). I was told to use less nsaids (so hard w a bad back!) and go light on meat consumption.
Q- How bad is that? Is it likely that my kidneys will go back to 100% with better bs? How do you know when there's permanent damage? Is high protein from veg, soy, dairy, and grains ok? How much will eating meat affect me? Is there anything else I can do to be kind to my kidneys?
My triglycerides are crazy high at 959 (0-149 normal), cholesterol is 357 (100-199 norm), hdl is low at 30 (39+ norm). I was instructed to eat low fat, retest later.
Q- Anyone else ever have numbers like that? Did they go to normal quickly once your bs was ok? Am I at risk for any extra problems right now, assuming those levels haven't been a long term thing? What do I eat??? Does having four meals consisting of 400-500 calories, 50g of carbs, low in fat, and no/low meat seem ideal for me? Any suggestions?
Lastly, I want to lose weight. I've been overweight for over a year now, and really want to get back in shape. I spent the 5 months after the 'big gain' eating clean (veggies, lean meats, good fats, high fiber carbs, some fruit, etc), lowish calories (1400-1800/day), and doing 4 hrs weight training, 5+ hrs cardio per week. I've been heavy before, but was always able to get back to normal this way. After 5 mo, I did look a little better, but didn't even drop 1 size. Scale showed only 3lb lost. I got frustrated, the mega hunger had started, and I went back to poor habits. That's when I started losing weight due to the D. Not a magical metabolism fairy, much to my disappointment ;-)
Q- Was my inability to lose weight related to D? If not, any theories? Any advice on effective weight loss strategy? Is there anything different I should do because of the D? Is there anything that will lessen the hunger? Are there any prescriptions or supplements that would help me?
If you made it this far, THANK YOU! I appreciate any and all guidance you feel like sharing.
Agreed (I think -- LOL.) The definitive diagnosis for T1 is the attack on the beta cells by the immune system (it's an auto-immune disease.) I also agree that T1 is a completely different kettle of fish than a T2 eventually stopping the production of insulin due to long-term (non-auto-immune) damage to the beta cells. Absolutely.
Insulin resistance in a T1 is another story.
I agree that it's mostly semantics -- and I think that the term "double diabetes" is maddeningly imprecise and confusing to normal mortals. Sigh.
We're normal mortals?? LOL. I've given my own self a headache now.
Who knows, in 20 years everything we think we know today may be proven wrong, or at least over-simplified. But I don't think we're there yet. It's frustrating that it took so long to get doctors to say Type 1 and Type 2 rather than Juvenile Diabetes...and? I think they continue to underestimate our capacity to understand by saying colloquial things like "you have both type 1 and type 2" instead of, for example, "you are type 1 (autoimmune) but you also have insulin resistance."
Point people in the way of a scientific journal involving a case report where someone had both type 1 and type 2 going on... and that will solve it.
Not some random sites, sorry... just not good trustworthy references :/
A review article (there are citations within the review):
http://www.ncbi.nlm.nih.gov/pubmed/21525450 (click on the link to the right)
I think the most important thing is to just remember that we're all different, that our bodies are complicated, and that the diabetes community is not fully aware of the various "flavors" of diabetes. We all just need to focus on figuring out what works for our own bodies :-)
I know what works for my own body, Annie. And I know that because I spent a lot of time clarifying my own diagnosis as a Type 1, something the "experts" hadn't done. Please see my response just above agreeing that Type 1's can develop insulin resistance and Type 2's can stop producing insulin. But they don't change Types. The only people who change Types are people who were incorrectly diagnosed to begin with.
I'm also feeling this discussion isn't really going anyplace at this point so I'm opting out.
Hey Zoe~ I've been following this conversation and I disagre (well, for me anyway) and feel this has been a great conversation and has probablly helped a lot of folks. As a CDE who's been involved in the diabetes community professionally for over 20 years and as a sibling (my sister has had T1 for 30 years) this conversation has been excellent. I totally agree that symantics are a huge part of the discussion and science as well. The problem is that as several have mentioned everyone's diabetes is a little bit different becuase the human physiology is SOOO complex that one enzyme different from one T1 to the next can make a difference and T2 is even more complex (physiologically). I also know that as Jean (aka laguitarista) makes a good point about genetics and that I know several folks who have + GAD, develop the entire spectrum of insulin resistance markers (elevated triglycerides, low HDL-cholesterol, extra weight, insulin (even though they've been taking it for years) that doesn't seem to work very well and more than expected is needed to control sugars) and if the hadn't developed T1 ever they most likely would have still developed T2. The ongoing classification of Type1 and Type 2 has oulived the science and I'm hopefull that to make everyone even more confused they (whoever is in charge of the classification system) will come up with a less confusing way to 'categorize'. Really T1 and T2 are totally different diseases with different mechanisms resulting in a similar situation (elevated sugar/glucose). Besides LADA there is also another somewhat common form that we see clinically called ketosis prone (Flatbush) that is more common in the black community where the presentation looks like T1 because there can be ketones and DKA, but then glucoses can get very high without DKA (in the 400-700 mg/dl range) and those folks can go without insulin sometimes for months without 'getting sick'. My point is that there are many varieties of diabetes that don't fit into the current T1 and T2. As per this conversation that are also differences within T1 community and T2 community. So, thank you for keeping that conversation going because it was beneficial to me. AND, thanks for all the other posts, you've obviously spent a great deal of time/effort (besides what it takes just to live with D) to understand your diabetes and what works for you, I wish more folks (not necessarily on this formum, but in general) would follow your lead.
Semantics, semantics... I think I'll bite.
As a CDE, perhaps you could push a movement to eliminate current terminology. There obviously needs to be more designations, because it sounds ridiculous to say that a person can have both types. It truly does. They have different causes.
When using MINIVANDITTI as a guide, one realizes that a disease process may occur due to metabolic, infectious/inflammatory, neoplastic, iatrogenic, vascular, anomalous, nutritious, developmental, idiopathic, traumatic, toxic, or immune-mediated reasons.
Diabetes occurs primarily through immune-mediated or metabolic mechanisms. There is a possibility, of course, that you may have a combination of both mechanisms. This does not mean a person has 'both types'. It means that they have a combination. You also should not forget about diabetes insipidus, though that's caused by a different metabolic mechanism than even 'type 2'. My sister had diabetes insipidus. And as an FYI, animals can have all the 'diabeetuses' too, varying from species to species in severity and pathogeneses.
Anyway, if I were in charge, I believe it would make the most sense to do the following classifications:
Type 1 would become Immune-Mediated or Autoimmune Diabetes Mellitus
If a type 1 then developed insulin resistance, I would add 'with insulin resistance'. I would not add 'secondary' because in this case, the autoimmune process attacking the pancreas did not tell the body to become insulin resistant. The genetic predisposition was already there.
And of course, you can further divide the classification of immune mediated or autoimmune into the various types of autoimmune processes that result in a 'type 1'... LADA, MODY, etc.. whatever.
Pre-type 2 would become something to the effect of Early Metabolic Syndrome (if it's not called this already. Horses develop metabolic syndrome which is a state of insulin resistance; they never fully develop diabetes, but having elevated blood glucose for long periods of time leads to regional adiposity and a condition called laminitis, so this is my basis.)
Type 2, then, would be something along the lines of 'Insulin Resistant Diabetes Mellitus'... and if they later become insulin dependent as a result of destruction to the pancreas? I would add something to the effect of 'with secondary insulin dependence'.
I don't know why human medicine insists on making things very convoluted, but they do. I know it's because they still don't know a lot about diabetes in general (let's face it, they don't) --- but having a classification scheme similar to above, better defined and better labeled perhaps, would solve a lot of issues with arguments like these. Maybe in veterinary medicine we just like to make things make sense. Sure makes it easier to explain to clients.
Although, I think I'd change the Pre-type 2 to Early Insulin Resistance since metabolic syndrome is used for something else in human medicine already.
Thanks, Kara, that's very kind! This forum was part of how I figured out my correct diagnosis when I was living in Guatemala, the oral meds stopped working and my blood sugars were in the 300s and 400s, so I like to help others and still come here when I have questions because the learning is ongoing.