Still a Type 2....Type Weird!

Type 2
1

It has been a while since I have been on here.. Lot of problems in life specially recently.

I was dx'd 5 years as a Type 2 even though I don't fit the typical profile.
I was told I made plenty of insulin and went on Metformin. I am skinny and always have been..

After the initial shock and being afraid to eat anything for months, I was able to keep bgs down ok by eating like a gerbil...

About a year ago, it wasn't working anymore..Even if I starved myself and ate nothing it didn't go down. I got a new job a year before added more stress to my life etc.. But I don't think that is the reason things started getting worse.. They up the Met 1750 Er _ i have a hard time swallowing these and have choked on them periodically and gagged on them..

So a new GP put me on Januvia 50mg in addition to the Met. It seems to work after week and than stopped working after a month...This was this past August... My waking numbers ranging from 140 to 180 almost all the time no matter what..

Anyhow at the suggestion of a friend who was starting on insulin and was finally seeing a specialist.. I found one that is a specialized diabetes clinic near me.. I am happy there is one.. All they do is diabetes...

Anyhow, after many years, of other diabetic folks telling me I am probably Type 1.5 (LADA) _ and I thought this too!! I finally got to see a specialist..I had to wait two months but she is great! (Kolver Diabetes Center at UIC in Chicago)

We went over everything about me and my numbers and she was convinced I would test as an LADA or Type 1... Well, all of the test were run and ...I am not.. I still remain the medical mystery of Type Weird...

Test that were run for diabetes:
GAD65 AB Assay
Insulin Antibodies
Islet Antigen 2 (IA2)Antibody, Serum
ZNT8 Autoantibodies
ALL NEGATIVE.

My C-peptide was finally run again.. No one would do it again until I saw this new dr (she is a endo specializing in pedatric diabetes)
C-Peptide Range: 0.30 - 2.35 pmol/mL Result: 0.77

So that is towards the low side.. I am trying to get a copy of my first one... where they said I made tons of insulin.

I don't have a support network really just some FB friends..I do not talk to my parents, I am dating someone new and he is isn't giving me the support I really need about this..I am sad because there still aren't any answers for me...

Right now, she is upping my Januvia to 100mg and the Met will be 2000 a day but I am getting smaller pills.. maybe not the ER ones.. I did find out that my insurance covers strips and I am getting a better meter (Contour Next!)

If the new Janvunia/Met Combo doesn't work, than we will move to some of the new non-insulin injectables out there.. I heard Victoza was working for several people...

She isn't against giving me insulin at all and we will that direction if needed... I want it because I am very exhausted - I can tell that nothing I eat gets converted into energy...Metformin doesn't help with that and neither did the Januvia..

I try all sorts of foods and vitamins combo hoping it will help.. nope. She actually tested my Vitamin D and B 12 and they were DOUBLE over the range.. so at least less pills for me to swallow.

Wishes for the zillionth time in my life that I didn't have diabetes... Very few people understand how it feels to feel like you are dragging chains around your ankles because of the tiredness...

2

If your BG is up and your lab results are on the border and you're not happy with your BG, why not try some insulin as the doc isn't against it either? I'm T1 and am a fan of working to "normalize" or work towards normal BG so I always wonder if it might be easier to just hop on the insulin bus but I know that it doesn't always work quite the same way for everyone. I was DX'ed in 1984 and I *still* remember *exactly* how ghastly I felt before I was dx'ed and how much better I felt once I got on the juice. It's a huge motivator for me as far as my BG...

3

Thanks Acid.. Well, because I still make some insulin she first wants to try the Type 2 meds I mentioned.. If they do not work, than I can choose to go to insulin.. She seems SUPER knowledgable like she does a lot of research and such and I know she was baffled by me. "Oh this is really interesting..." so I know she has what is best for me.

She said the decision to not do insulin get was related to my c-peptide COMBINED with my BG numbers..that insulin is not the first choice.. I think my waking number on that day was 136 and 199 when I got to the clinic... all I had was gluten free toast with peanut butter though.. She said my numbers that I gave her for the past month do not match my A1C of 7.2

I don't have too much faith in the Januvia or Met to fix this.. I will to try the others too..

But yes, I have heard that about insulin... people got energy back and felt like their bodies have been craving it for a long time... I am feeling somewhat like that...

Besides being tired I was wondering if the difference would be in having muscle weakness too... I have that.. I had SO much energy in my 20s - it was unbelievable.. I know I am not in my 20s anymore BUT I don't think I should feel like this.. I mean, I am NOT 90!!! I still should have some energy at 45...

I go back in April but I am to call in a month if BGs are not going down.. I am sick of starving myself and want to feel human again..

I can ask her for insulin and she isn't resistant to it.. I will hang in there a bit longer and see. BUT if this new stuff isn't working... I will say "I want to try the insulin."

4

By ghastly do you mean like dragging a suit of armour around?? Or something like..always feeling fatigue and exhausted.. I think I don't sleep well because my numbers are high while I am sleeping...

5

The suit of armour is a good analogy although I recall a pretty chemical "sense" oozing through me too, which was really nasty, probably DKA or something. My eyes actually got better as my body ate the fluid since I wasn't getting energy from food without insulin. For like 20 years, I didn't "need" glasses to drive because I passed the test without specs while I was recovering in high school!

I dislike the whole "still producing insulin" conversation. Richard157 has pointed out that 50 year Joslin Medalists with T1 can be found to produce some insulin. The key is whether or not you have enough. I also don't like that T2 are treated so casually, sometimes, 3 month f/u, sometimes 6 and "let's see how those pills work". I have about 5 coworkers and now one of my poms mom buddies who ask me questions about T2 and I'm totally on a different planet but they are watching their BG and see it high. That's kind of why I'd like to see a shift from hitting targets that are, in my opinion elevated, to a philosophy of improving until you achieve normal BG or as close as you can get without too many lows for all types. It's more streamlined, at least from a philosophical perspective and I think it would make more sense. One friend was kind of freaking to have finally hit 6.4 A1C which triggered a Met RX but I would usually take tactical action any time well before my BG runs up to the 6.4 level, c. 135 EAG

6

My heart really goes out to you. You are like my long lost twin sister. I had chronic high fastings, didn't respond well at all to oral and injection T2 medications and like you also tested negative for antibodies. My last c-peptide was 0.4 ng/dl. All this has gone one for literally years. And the hardest part is not knowing. If I just knew what was wrong with me I could figure out the proper way ahead and get on with my life. But like you there is a big question mark looming over me.

It has been really hard for me to accept this and it led to quite a few conflicts with my doctors. I really got angry at being told repeatedly I had diabetes because I was fat and that if I just lost weight it would get better and go away. And the repeated criticism of my diet and exercise and being considered to be a liar. And then being refused insulin. Actually being denied insulin. I had some loonies as doctors. In the end I found a doctor who accepted me for who I am (unique) and is supportive of my insulin use and has been really supportive of searching for answers and supporting me being healthy.

And I know that you feel left out in the cold with no answers but actually you are really lucky. You have a doctor who is supportive and helpful. They ran the antibody tests, it too me literally years to get them. And your doctor is willing to explore whatever treatment is necessary, that is what you need. Not everyone will appreciate the burden that you carry around having "weird" diabetes and unexplained symptoms but we do. If you need to come here and just vent we can listen, we can support you. Maybe we won't be particularly helpful, but hopefully you will feel better.

7

KimKat - I would definitely take the doctor up on reporting if your BGs are not down after a month. I would mark that day on my calendar and call!

I know insulin has its own drawbacks but why do you need to go month after month feeling miserable? You've been on the pill testing regimen for how long?

I've read that the Joslin diabetes clinic has changed their type II protocol to starting patients much more quickly on insulin. I believe there has been some research that supports this.

Good luck! You really need to advocate for yourself. I know it's hard but your experience living 24/7 with diabetes gives you equal authority with any doctor!

8

Thanks Brian.. I did get lucky finding this one.. But I waited 5 years for this... The first two years I was dxd I had no insurance or money and was out of work... I went to a low cost clinic to be diagnosed after a test for a UTI and the nurse found sugar in my urine. She said it so fast after I handed her the cup I thought she got mine mixed up with someone elses! I wanted to see specialist right away but I couldn't afford it... All I could afford is the low cost clinic I was happy at least THAT option is available or I would had have nothing.. I got a job in 2012 and I should have went to an endo back than... GP only did the basic but my sugars were not that bad than.. In 2013 I was upped and than in 2014 the Januvia..

I am so sorry things have been so tough for you... Yes,they are our bodies but no one listens.. We have to live in them... I am the one who has to feel like I am dragging around armour.. lol!

I will not waste time if these are not working. Month is plenty of time and she knows I will be calling.

9

I will Terry.. It will always be on my mind... :)

10

I was just realizing something.. I eat like a gerbil.. Meaning i hardly eat anything trying to keep those numbers down... (not working but) so of course my numbers aren't going to look high enough for insulin to my dr.... I want to be able to eat more... I think not eating like a bird anymore even thought it will drive my numbers up it will be more realistic.. I should be able to eat more normally. If do that, the numbers will be higher and she will see that I can be on insulin... Just a thought (don't know if that makes any sense) not trying to ruin my body...but I feel like im doing that now hardly eating anything...I am going to demand insulin next time I see her.. I don't even want to bother with the other stuff. They aren't going to give me any energy back right???? Insulin is the the only thing that may help that.....

11

It sounds like you have reached a wise decision as it pertains to you. I experienced similar problems during the first 5 months after diagnosis. Actually, I was self-diagnosed but had it confirmed by the top endo in the County (based on the opinions of my physician friends). I was started on oral meds that produced zero results. These included Actos, Januvia, metformin, and others. I was already suffering from neuropathy and foot drop and the condition seemed to be worsening. My endo encouraged me to stick with orals "for a few more months" even though my body was telling me that the damage was continuing, if not worsening.

I finally purchased insulin on my own (Regular, NPH and mixtures are available OTC in most States)and began my personal journey of exploration. My endo had shuffled me off to one of his PA's at that time so I did not fear offending him. As my blood sugars dropped and normalized, my symptoms began to fade. After three months, the foot drop was gone but full recovery took nearly two years. My A1c test results were now firmly in the low end of the 5% Club and I could walk normally again. My endo noticed my declining A1c numbers and after two years, began seeing me personally again. Most of our time together was spent with the endo quizzing ME as to what I was doing, what supplements I was taking, etc. My endo finally endorsed my use of insulin by prescribing it for me. Unfortunately, insurance never covered any portion of the costs since the type of insulin I chose to use was an over-the-counter product and not a legend item. I still use MDI and OTC insulins because they simply work. I have more accurate control and experience very few lows (NONE that have been serious or required intervention). My philosophy has always been: why mess with something that isn't broken and works? Better, in fact, than some of my pump-using friends who are not as well controlled and had far more lows (and more serious ones) than I have ever experienced.

Good luck in your endeavors. IMO, you're headed in the right direction.

12
I am sad because there still aren't any answers for me

There is an answer: Insulin. Specifically, fast-acting, bolus insulin.

If you're up to the challenge.

It's really quite paradoxical: What is most effective for a T2 -- at any stage of diagnosis -- is fast-acting bolus insulin. Do T2's have a problem producing sufficient basal insulin? NO! What T2s don't do is produce enough insulin to cover food.

Yet, bolus insulin is the very last, only if you're about to die treatment given to T2s. Everything else is thrown at it, including long-acting basal insulin, until the patient is so sick that they now must treat their disease like a T1.

I'm pretty sure I know the reason for this: Risk aversion. It's too easy for a careless person to kill or permanently damage themselves via hypo if they're a putz. And we know there are plenty of them out there.

Still, this should not prevent every one of us smart, engaged, motivated, and eager T2's to start bolus insulin immediately upon diagnosis. It truly is the only way to control blood sugar. All the rest of it -- the oral meds, basal insulins, other hormone injections, even diet and excercise -- are very blunt instruments that control one thing: Average blood sugar.

True control can be had, but it requires bolus insulin.

KitKat, it's not hard to get it all down and routine. If you're willing to do some carb counting, simple math, and a discrete injection before meals and for a correction now and then, run -- don't walk -- to your endo and demand pen-delivery fast-acting insulin. Only then can you truly be in control.

13

KitKat, please understand that the problem is likely insulin resistance.

As a result, you pancreas is worn out. It can't produce enough insulin with natural signaling. It maxes out well below what your IR is requiring to process the glucose.

Most non-insulin treatments are, in essence, pancreatic stimulants. The sulfonylureas are direct stimulants -- while present and active in the bloodstream, this class of drug just cranks the beta cells up to 11 (a secret setting about the max 10 on the insulin volume knob :-)), until the drug is cleared.

The other, newer treatments like Januvia, Byetta, etc. do the same thing in effect, but indirectly through other hormone signaling paths, and are a bit safer because the beta cells turn off when BG gets down to normal.

Regardless, all of these approaches are putting a heavy strain on your beta cells, and it has become a pretty well accepted theory at this point that this "burns out" the beta cells -- research on-going to verify this, lots of anecdotal case-data consistent with it.

In contrast, using exogenous insulin has the exact opposite effect: It gives your pancreas a rest. Many believe it will then last longer. Maybe even rebound.

I found this myself: When I started insulin, I needed both basal and bolus. My pancreas couldn't even handle basal needs.

After six months of a basal/bolus regiment, I regained enough weak beta cell function to drop the basal. Now I only need to bolus to keep my BG in line.

Give bolus insulin a try. You won't believe how good you'll feel, and how much energy you'll have.

14

Thank you Dave for both of your responses...

Although I am nervous (did you say math??? oh boy! lol!), I just messaged my dr and said that I want to start insulin...and I told her why...

I am not sure the difference between bolus and basal.. I think basal handles night time stuff. I thought it was for dawn phenomenon..which it seems I have .. I never wake up below 140 anymore.. (I got the lucky the other day and I got a 113 - I have no idea how that happened - oh, I know - I didn't eat anything).

Plus I have been having issues getting my Januvia - the new dosage is 100 mg and per my insurance it is supposed to be the same price as the old 50 mg I was getting. I had a Januvia card where I was paying $5 for a monthly fill of that and even though the prices are to be the same (card is based on price) Walgreens won't use my card and it is like $288!!! Uhm, I am not gonna pay $288 for something that is probably not gonna work... The 50 mg seems to be working for like a month and than BAM it stopped.. (of course I was starving myself too).

The other cheaper options she gave me was Tradjenta, Nesina, or Onglyza. Nesina was the cheapest but still expensive.. She said other wise we could try another "class" of meds... I have NO idea what that means.. What is another "class"?

Also, where can I get insulin OTC? I am right outside of Chicago...

The part that scares me about insulin is the carb counting and math. I guess becaus I am used to just taking my pills (which I have a hard time swallowing btw) and hoping for the best.. Low maintence.. I have always been a low maintenance person... The only thing that makes me happy about starting it is feeling better and maybe being able to have Orange Juice again if I go low.. (I feel like that makes me sound like a freak - but oh how I miss OJ!)

On my first consulation with this endo, she actually did say "If I were you I would just go on insulin, and save my last beta cells." But I think this was when she was thinking I would test positive for all the LADA and Type 1 tests...She said I would go on the lower dosage for now.. I kind of like the idea of the long acting insulin because less worry and work...

I know controlling my numbers is important and I want to do that.. But I want more than anything is to be able to eat more again and to feel better... I seriously sometimes feel like a walking corpse. And really why bother to live like that?

I don't know if anyone can relate - but you ever have those days where you get up feel exhausted with no energy and think "why I am dragging myself through this?" "Why another day of dragging the 'chains' around?" Ok I know that sounds depressing but when you have no energy it is hard to be thinking about anything because the little energy you do have is all concentrated into dragging yourself through life.. And is no way to live..

Anyhow, I will let you guys know what she says..I know she isn't against it.. but like many of you were saying - I feel like crap and it is difficult - why wait any longer?

I am done waiting....Even if I could just TRY it, to see how I feel... it is like this unanswered question that I can't get it.. Well, I am now gonna get there.

My lack of energy makes me crabby and irritable and it sort of ruined my last relationship... No more of that.

15

WHEE!!! She said she is OK with it... Here is her message... I am still new on all this so I would start low with an educator to give out how to do this... But I want to try any how.. Can't hurt right? She wants to start me on Lantus - I believe that is long acting insulin right? i have no idea what a "titration" is???

"If you really want to go on insulin, that would not be a problem from my standpoint but you would need to learn how to give it and I would start you on a pretty small dose. I'm not sure if insulin will restore your energy since your numbers aren't that high.

Regarding other classes of medications - I am listing the more effective ones:
The standby includes sulfonylureas such as glipizide, glyburide, glimepiride although I don't think this is the best choice for you for many reasons, including increased risk for hypoglycemia.

There is a newer class, SGLT2 inhibitors (the oldest one on the market is Invokana but there are two others) which block glucose reabsorption in your kidneys - main concern is that it increases risk for urinary tract infections/yeast infections (up to 10% may get this), lowers blood pressure. These are relatively new so longer term safety data are still pending.
There are thiazolidinediones (i.e. Pioglitazone) which lately have had a lot of bad press(? Increased heart attack risk, bladder cancer) and this is not my typically my second line.

There are also the GLP-1 agonists which you mentioned in clinic (Byetta, Victoza, Bydureon, Tanzeum) - which act on a similar pathway as the januvia, but are injections and more effective - dosing varies from twice a day to once daily to once a week. Major advantage is potential weight loss which has not been a problem for you. Some people cannot tolerate them due to nausea. Potential concerns are ? Risk for pancreatitis, ? Growth of a type of thyroid cell (so far in rats) which if it occurs in humans, can predispose to a rare form of thyroid cancer. This is a reasonable choice for those who do not want insulin.

If you still want to take insulin, I could start you on Lantus 5 units at night with titration up to 10 if you are still high in the morning, and schedule you with the educator to learn how to give it. Just let me know."

16

You did exactly the right thing to work with your doctor on this. And your endo is to be complimented for her being supportive. Lantus is a basal insulin providing a slow steady stream over 24 hours to keep your fasting blood sugars controlled, it will also help your DP. Titrating simply means adjusting the dose.

Good luck with your visit to the educator. Be brave. Injecting actually is easy and it hurts less than lancing for a blood test.

17

Thanks Brian! I am excited but a bit scared - only because I live alone... I am thinking that something that low I won't have to worry about hypos.. I don't ever have them.. I had them twice in life - once when I was young and once when I was a diabetic.. So I remember what they feel like..

I am not afraid of injecting at all. The math scares me! lol! I am really bad at math (yeah, I still count on my fingers sometimes!) I don't have a fear of needles.. And I never thought the lancing was painful - yeah like for a second but that doesn't bother me at all..I like to watch them draw my blood..

Yes, my FBG was the first that started changing.. They stopped going down... With my night time numbers down, maybe I will sleep better??? (that is if I my cat doesn't yowl - I have to sleep with Boses on so I can't hear her)

Does everyone normally inject in the belly fat? (if so, I guess mine is finally coming in handy! lol!)

18

Get on insulin. A lot of endos are giving it to T2s these days, and I think it beats being on a bunch of T2 meds. Also, if your c-peptide levels continue to drop, you'll just continue to get sicker. You'll also get some idea of how sensitive you are to insulin.

Also, Metformin and T2 drugs can have nasty side effects if your problem is lack of insulin production. I was misdiagnosed as a T2, and even though I was on inuslin, I was sick all the time until I got off it. JMMV.
19

Thanks Scott!

I have been on Met since the beginning 5 years ago - no problems with it.. I have been on Januvia since August.. no problems..

I will still be taking those plus the insulin now..

Can people have side effects from the insulins?

20

Hello! I am apparently type weird as well. My doctors have been debating back and forth for over a year now. Test show one thing but the way my body reacts shows another. My tests tell me that I should be type 2. So they took me off the insulin they initially started and put me on pills, which didn't work so they put me back on the insulin. Ran GAD tests and everything was normal. soooo I'm type 2. I'm 28, play sports, work with kids, and am constantly on the move. I am considered overweight according to weight charts but 5' and 120 isn't unhealthy by any means. Although insurance is fighting it my new endocrinologist is fighting to get me on a pump and CGM instead of the 4-6 insulin shots and 10 finger pricks I'm doing a day right now.

Although it sucks. And I know the pain of the "unknown diagnosis". I'm glad to know that I'm not the only one that seems to have this issue. My doctors have apparently never had this much trouble figuring out a diabetes diagnosis.