Kim, tell them you are new to diabetes and want the full work up as part of a second opinion.
You do not need to tell them anything else until you see the endo. Then you can bring up your concerns about correct diagnosis and need for additional testing. Go in with all your records, and your list of concerns.
If the endo practice is a good one they will be interested in the same answers as you want and will work with you, regardless of the GPs unwillingness to do so. The endo should have dealt with the T1/LADA question in newly Dx'd adults before so should not be a problem.
My advice go to the endo, get the testing done. Getting the right diagnosis and therapy asap makes a huge difference in how you feel, both physically and mentally.
It also makes a huge difference in insurance coverage for the things you need to live a long and productive life.
Don't wait - seize the day!
sounds to me like you are not just T2, it looks as if you might require a basal rate i.e. insulin. I use to be treated as T2 and would eat only iceberg lettuce with water for 6 mos. To keep my blood sugar below 200. I rode my bike hard core for 2 miles after every meal and before and after work, I lost an incredible amount of weight too fast and my doctor had no idea I was doing all of that. It wasn't until I ended up in the hospital and I refused to eat a Diabetic diet that it would discovered I needed to eat real food and the only way to do that was to take insulin. Within 6 more months I was finally tested to see if I was Type 1 or Type 2, the answer I'm 1.5 I make no insulin of my own and I'm quite resistant to the insulin I have to take. So what does that mean, It means I'm on a pump for life or at least until there's a cure.
I'd ask for a C-peptid and islet test to ensure you're making enough insulin and your body is using it well. Praying for you.
Hiker
Be sure you take all your records with you. That means all your food logs and the matching BG testing at goes with them, it's your documentation of the need for different therapy and a full evaluation to prove type.
Well, I am not really "new" and they will see my records in the computer (it is the same hospital) and know it has been 4 years. I do have my paper records though. I guess I will just say I want second opinion and more tests because meds aren't working anymore. Hopefully that will be OK.
Should I ask them directly to test me for the LADA?
I would love to have that genetic testing done too. My grandmother has diabetes but all my mom knows is that she got one shot of insulin a day. This was back in the 60/70s so don't know if they had pills or tested for types back than.
There seems to be a few endos are said to have dealt with my age before but that is type 2. You can't search for drs for any of the other tyes. I guess it is assumed. I would have thought that Type 2 don't normally go to endos and I think that is why when I ask my primaries shoudl I go to one they say no because I am listed as a TYpe 2.
Thank you Hiker. Yes that sounds like me in a way. I was able to keep AIC in the 5s for the first few years but yeah, I hardly ate anything. When I try that now, it doesn;t work. I also lost 30 lbs very quickly (and I was not over weight) after my dx because I ate almost nothing. The met did work at first though.
I had a C-peptide when I was first diagnosed and I make plenty of insulin. I am trying to remember the number ...7 maybe? That is why they labeled me Type 2. I asked my old dr about getting the c-peptide retested and she said it wasn't necessary. I didn't think that was smart. Why don't they want to retest that? Lazy??? I am pretty sure it can get worse with time.
I too couldn't take multiple Metformin, I heard that Diaformin is a slightly smaller tablet and you can break it in half. Not sure you will be able for get this brand where you live, but please investigate at the pharmacy and see if they can come up with anything better. Diaformin hasn't upset my stomach or anything like that, it is such a relief not to dread taking 'horse' pills.
When newly diagnosed your body still has the C-peptide in it, it takes time for it to fade out. I'd get retested even if that means going to a new endocrinologist just for the testing. You really sound like you are 1.5 or at least LADA
Ok,thanks. Yes, I want that retested. It has been four years. I am sure it has done some fading.
Thanks so much you guys have been so helpful.
If the endo won't give me insulin (which it sounds like might work for me), can I demand it?
What if they still say no?
I will have to look around for my old c-peptide.
As before, my stomach is growling but I just tested and I am 186. Last thing I ate was an apple at 5pm. It is eight now. I went out grocery shopping and I walked on my commute home. Why isn't it working anymore? Sigh.
NOw, I have to eat something for dinner but at 186 - I feel like I am not allowed. This is why I stopped testing for a while. I can't not eat just because the number is higher. That meter could be wrong.
I am nervous about this. I don't want to be one of those who has to measure EVERYTHING and count all the carbs and measure out the insulin based on how much I eat. I get exhausted just thinking about it. I hope I don;t have to figure out fraction and percentage because I suck at math. :(
Kim,
Having the records to show the endo of what you can/can not eat vs your numbers will help tremendously with evaluation of whether current medication regime is working. It is the proof that you need a different plan. Do not be afraid to insist on a complete reevaluation of your situation. Your request/demand for a different treatment is justified. Do not be afraid/intimidated by your docs, go to the endo, they should be part of your team and working for you, not the other way around.
I think we all have frustrations but the details are as individual as our diabetic condition. I was told "dont eat this...", "dont do that", do this or that and nothing works. We feel extremely defeated! This is what I have learned for myself, some protein, such as peanut butter with an apple will slow the absorption of fruitcose such as that in an apple or pare. Pick your non-MEAT PROTIENS with your fruits and veggies and it should work better from what I have learned.
Peanut-butter
Beans
Chick Peas
and Eggs or fish if you can eat that. Everyone living thing needs some type of protien.
My hair fell out at an alarming rate when my need for insulin arrived. Changes in our bodies is scary.
from my personal opinion of my body, I am part Type 1 and Part Type 2 and not a full fledged LADA from the tests. Frustration, yes I have had and have that still. My outlook, I must learn to master my own body and how it behaves regardless of catagories or typical advice of others.
Thanks!
Omg, Yes I try to do that with the proteins. I will have to add something with the apple I guess. I miss fruit and I think we are supposed to eat some right. I go for the small apples and plums. I really miss pineapple though. Sometimes I will buy a container of the cut ones and just eat one or two every once and a while.
Omg, you just scared me away from insulin! I don't think I could handle losing my hair like that. I have worked so hard to get it growing back in better in the last few years. I take a lot of vitamins, herbs, iron, extra biotin and silica for the hair. My t3 is low so it doesn't grow in very thick anymore but it is getting better finally!
Seriously I would rather take 10 of those met horse pills rather than have my hair fall out That is one thing I intend to keep no matter what Even if they told me I needed chemo I would say no because I don't want to lose my hair.
Is it the insulin that made your hair fall out or some other change??
i have a weird feeling I will be like you. That I will still have c-petide ok but maybe I will be one of those Type 2 who need insulin.
What exactly do they test when they test for LADA? An anti-body?
Ok, thanks. Well, I just have the number like A1C etc. I don't use a fancy meter will my regular numbers. But I plan to start testing more again (even though it depresses me) so I can give her an idea of what are my average. I just had my A1C done and it was 7.1 or 7.3 and my dr said that is an average of 130.
Ask for a re-evaluation - that sounds like the perfect thing to say!!! "Things have changed so much. I want to be re-evaluated."
Actually I had no insurance when I was DX'd so I had to go to the low cost clinic and couldn't see an endo. That worked out OK at the time and for the first two years or so but now it is different. So glad I have insurance now.
I feel more prepared now that I have something planned to say. Those drs always make you feel like you are not right.
Do they usually test the hormones too? I know those can be a factor in BG numbers. I alreayd know I have higher cortisol than normal evening and night and too low in the morning. I am working on correcting that. I haven't tested that in over a year.
Kim,
Keep a food and BG log. You need to record fasting, pre meal and 2 hour post first bite. For your food log you need to record type of food eaten, portion eaten and amount of carbs eaten. If you have this information for a variety of foods it will help a lot.
Looking at that info is part of the reevaluation you want. The tests for T1/ LADA will include c-peptide, and the full antibody panel, should include GADA,IAA,ICA,IA2A, and ZnT8.
Also don't be afraid of insulin, the hair loss mentioned was not from the insulin but from the extremely restrictive diet the poster used to keep her numbers under control. Once she was on insulin she could eat normally again and was much healthier and much happier.
First of all, I wish to apologize for your feeling of being ignored. As Judith said…we got “big” so quickly, it’s hard to keep up.
My thought is…why does the doctor not consider insulin? It burns my tail that some doctors leave insulin as a last resource! Have you asked for it? Patients have right too!
DEMAND insulin…if the doctor balks at that, demand to see an endocrinologist. If a family physician puts up a wall when you are requesting sensible options, then perhaps it’s time to seek someone who specializes in that field.
So update on this. I got the Januvia coupon from my dr. It is good for 12 prescriptions. So 1 year I think and I don't know what kind of discounts I will get until I bring it to the pharmacy tomorrow. If it isn't under $30 I may say no because I have been reading some horror stories about Javunia and it making me nervous. Pancreatis and people dying from it. I don't know about this now.
But I am getting nervous about my BG numbers. Seriously I get the same two numbers everytime i test. Either 167 or 176. It is like my meter is haunted. I have two so I tried both and I got pretty much the same thing. Weird-0-rama. Like today I ate a small plum before i left work only this time I add some protein before it a stick of cheese like someone suggested. Three hours later I got a 176. I am anxious to fix this. I have been having a lot of floaters lately and it may not be related to this but still makes me nerous.
I didn't call an endo yet but I will. I wanted to see what this coupon was. Even if the Javunia works I think I will be too nervous to be on it for a long time.
What does everyone think? Whether or not, I buy it depends on the price but i am anxious to have a blood sugar reading that isn't above 167!!!
I take Januvia along with Met and Diamorcon and none of them do anything weird to me. I've never heard of Januvia being a bad drug.
Floaters can be from bleeders in the back of your eyes. Have you had your eyes checked later? Laser treatment can fix them. I've had that done and it doesnt hurt at all.
Well, I have had some floaters before and my eyes were fine. The dr said they were age related. They stopped for a while and have come back recently. I am going for my next exam in a few weeks.
How does the Januvia work for you?
When I read your original post I kept thinking "time for insulin" throughout the read. Doesn't really matter at this point what the results of the c-peptide test are it really sounds like your body is telling you that it's time.This.
Kimkat, please don't be offended, I mean this in the most supportive way -- you're getting a little hysterical about this and need to step back and take a few deep breaths.
You do not have some new, exotic form of diabetes that can't be effectively treated. Based on everything discussed in this thread, you're likely a progressing T2, or a T1/LADA.
We've discussed the latter a great deal in this thread, and you've had great advice regarding what to do next w.r.t. the LADA question, and how it should be treated.
We haven't discussed the first possibility much, one which I'm far more familiar personally. Funny thing is, I look at your data, and to me it looks like a progressing T2.
But here's what looks like the bottom line to me, at least: Either way, you need to start treating your condition with insulin. This is probably going to be necessary from here on out.
I'm T2. I've been where you are. Trying desperately to control BG with diet and exercise while taking metformin (and in my case, sulfonylureas too). Basically starving, and seeing BG still out of control.
You need insulin.
You also need not fear insulin AT ALL. It will not make your hair fall out. It will not, by itself, make you fat (this depends on what and how much you eat, just like with a non-diabetic... insulin makes this part of your metabolism start to work normally again).
I can tell you, from direct experience, that insulin will change your life. Dramatically. You will feel better than you can remember. Your head will be clearer. You'll have energy you forgot you could even have. Your (ahem!) sex drive will improve. If you've been routinely nauseated (skirting DKA or HHS) this will go away. You will have a healthy, hungry apetite, and eating will be satisfying. You can eat a normal, albeit low-carb (not carb starved) diet.
And I could go on and on. If you're a progressing T2, all of these great things and more will be the result of starting to properly treat your condition -- with insulin.
If you're truly a T1/LADA, pretty much the same thing.
Don't be scared of insulin. I was. For different reasons... I viewed it as defeat. I avoided it for years. I played the same games you're playing (don't test because I know the number will be bad, and then I'll have to deal with it), etc.
This will kill you eventually.
I've gone from a situation similar to yours in terms of lack of control, to an insulin pumper with a CGM a year ago, and the last year has been one of the best -- healthwise -- that I can remember for a very long time.
So, step one, get the right doctor managing your case and leading your care team. step 2, start treating with insulin. Start with bolus insulin (you seem to have enough endogenous production to handle basal needs). Then, profit!
It's clear to me that you have sufficient beta cell function to handle your fasting basal needs (hence the same numbers over and over during more or less fasting periods), but not enough pancreatic "muscle" to handle carb loading response.
This means that pushing your pancreas harder with artificial stimulation either directly (sulfas) or indirectly (januvia, byetta, etc.) isn't going to have much of an effect. Further, these approaches will likely accelerate the loss of function covering basal for you right now, further complicating and increasing the burden, "workload", to manage your diabetes.
In my non-doctor but experienced PWD opinion, you need to get off all other drugs than the metformin, and start either a long-acting background insulin to bring your numbers down gradually after you eat, or much better, short-acting bolus insulin "on-demand" to cover carbs when you eat and try to achieve "tight control".
Frankly, Januvia is in my opinion the "drug for T2s that are not trustworthy to their doctors". With bolus insulin, doctors have to be convinced their patient is going to be disciplined and careful about using it, to avoid serious risk of hypos. Yet, this is quite possible, and relatively speaking pretty easy and routine -- here's a whole site of people that can tell you how to do it, and live quite comfortably and confidently.
Januvia is an "inject and forget" treatment, like taking metformin. Great for a patient that can't "handle" bolus insulin, which it is assumed is virtually all T2s.