Endo appt tomorrow trying to get diagnosis

[lilituc]

I have an appointment with my old endo in about 24 hours. The reason I am seeing my old endo in Tucson where I no longer live is because I went to my GP to get Lantus since it's time now and he said no! I am convinced it's mostly because my paperwork says Type 2. I couldn't get an appt with a new endo in Seattle until the end of the month. I am feeling bad about this appointment tomorrow since I need the endo to change my diagnosis from Type 2 to 1.5 and I am afraid he won't. This is because on my last report he wrote "Negative GAD65 antibody test, therefore not Type 1 DM." Now even I know you can't even get a "negative" antibody test - the best it can do is "not positive." But it sounds like he is extremely hung up on that test. Anyway, I am trying to think of how to convince him despite that and in the 5 minutes I will get with him. I've made some charts and lists. Do you think these will help? Does anyone have any suggestions?

(this is a table but I can't paste that here)
Characteristics of LADA
Positive GAD65 Antibody test No
Thin and active Yes
Quick progression to insulin dependence/ failure of oral meds Yes
Intermittent beta cell function Yes
Lack of or very low insulin resistance Yes
Rapidly falling C-peptide Yes (I went from 2.4 to 1.0 in four months)
Normal blood pressure and triglycerides Yes

Characteristics of Type 2 present
No positive GAD65 antibody test

Possible negative consequences of being diagnosed as Type 2
- That have already happened
-- Nonspecialists see insulin treatment as unnecessary to maintaining health, especially due to small TDD
-- Timely treatment and more frequent appointments are denied due to perceived lack of "seriousness" of Type 2
-- Nonspecialist ignores C-peptide levels, history, and insulin dependence that indicate Type 1 (or at least similar treatment) simply because diagnosis is Type 2 - treating the diagnosis instead of the patient
-- High bg of no concern to nonspecialist
-- Specialist's office assigns low priority for scheduling of appointments due to Type 2 diagnosis
-- Inappropriate medical advice given. i.e. "eat fewer carbs and exercise more" based on false assumption of high carb intake and infrequent exercise due to Type 2 diagnosis - a waste of both time, money, and opportunity for appropriate treatment
-- Perceived as neurotic and therefore concerns are taken less seriously, due to actions such as frequent daily bg testing which is perceived as unnecessary and excessive for Type 2s
-- Negative, sometimes openly hostile reactions from Type 2s in support-type situation due to having nothing in common with them
-- Inability to gain access to Type 1 or LADA support resources despite their appropriateness
-- Very high stress level and low quality of life due to dealing the with above on top of diabetes management

- That have not yet happened but are possible
-- Inability to obtain adequate insurance coverage of treatment due to Type 2 diagnosis
-- "Sick day" assistance not available from primary care doctor (haven't had any sick days yet)
-- Presentation at ER with moderate or high ketones results in bottom priority once Type 2 diagnosis is discovered in records, resulting in several hours' long wait before ketones even confirmed or treated
-- Emergency treatment results in inappropriate action because "Type 2" diagnosis indicates overproduction of insulin and nonseriousness to most providers

I know this sounds kind of dire, but I think it needs to be. Any suggestions? I really appreciate any help you can give.

[BlueSky]

As far as the insulin prescription is concerned, does it really matter what the diagnosis is? You need to demonstrate that you need insulin. The falling c-peptide suggests this. And maybe a glucose tolerance test will help. If it shows that your bg doesn't quickly return to normal after the initial spike, your endo may be more open to the idea of using Lantus. If he doesn't buy this, you will just have to go off the insulin, for a while, record your BG readings meticulously, and try again. :hmpf:

[lilituc]

As far as the insulin prescription is concerned, does it really matter what the diagnosis is?

It shouldn't, of course. But the reality is that many GPs do not have a deep understanding of diabetes. Everything in my labwork and case history backs me up (except the antibody test), but the phrase "Type 2" somehow causes him to ignore that. The GP is not a bad doctor, he's just not a specialist. That is why I *need* to have the diagnosis changed. Also everything else I listed above as having already happened.

You need to demonstrate that you need insulin. The falling c-peptide suggests this. And maybe a glucose tolerance test will help.

There's no question that I need insulin. But as I said before, facts get ignored simply because of my diagnosis. This makes sense that people get confused - none of the facts except for the bleeping antibody test support a diagnosis of Type 2. Anyway, I am going to have the endo send his report (about giving me Lantus) to my GP because I want him to understand that he was wrong. Then I am going to find a new GP.

If it shows that your bg doesn't quickly return to normal after the initial spike, your endo may be more open to the idea of using Lantus. If he doesn't buy this, you will just have to go off the insulin, for a while, record your BG readings meticulously, and try again. :hmpf:

Hm, maybe what I wrote wasn't clear. The GP is the one that would not give me Lantus. I wrote to the old endo and told him that. He said right away that of course he would give me Lantus (he was going to back in June when I went on Novolog) but he has to see me. The endo knows everything in my file, and he treats that. He just wouldn't change the diagnosis before. Unfortunately, I cannot deal with the endo for every medical problem I have so I am forced to deal with people who see "Type 2" and instantly forget my labwork and other things.

There's really no way I would go off insulin and that's not just because of the possibility of DKA. I get physically ill and extremely tired when my bg goes over 130 and stays that way. Before I was on insulin, people with CFIDS were telling me that I had it. The fatigue and constant illnesses I had went away once my bg was under control. I tried to stop covering my basal with Novolog (but still taking boluses) to "show" the GP but I lasted less than a day and I was only running 130-140. It took me a couple days to recover. I am aware that maybe this kind of control isn't possible forever, but I will prolong it as long as I possibly can. Lantus is essential to that since I need to maintain as many beta cells as possible. If I had known I had LADA earlier I would have gladly accepted it.

As far as the GTT goes, 75 grams of carbs without any insulin would raise me about 225 points.

[mary1812mary]

I agree, it was my low c-peptide, low body weight (90 lbs, lost 28 lbs) and ketones that prompted my endo to immediately put me on insulin. My fastings weren't bad, but my postprandials were high. I'd had high bg readings for years that my gps didn't pay attention to. On GTTs I was always high hour 1 and hour 2 but would come down nearer to normal for hour 3. Then I would leave the clinic, and at hours 4-5 would be hypo (I didn't understand what was happening at the time, but would be shaking, unable to think, etc).

Who knows--if someone had recognized this earlier, maybe I wouldn't have gone immediately to insulin. But then again, I find being on insulin (a pump for 9 yrs) is probably better for me than being on orals or shots. I have really good control on this regimen.

[lilituc]

I agree, it was my low c-peptide, low body weight (90 lbs, lost 28 lbs) and ketones that prompted my endo to immediately put me on insulin.

Thanks Mary. I am hoping to impress upon the GP the danger of denying insulin to someone with insulin deficiency but I still need to solve the problem by getting my diagnosis changed to the right one.

I wasn't actually put on insulin until my blood sugar stopped going down by itself anymore. Previously it would go down 3-5 hours after eating. At the time I didn't know my bg was causing all the illnesses I had so I was only mildly angry about it taking so long to get insulin, lol. I should have tested for ketones then, but I didn't have ketostix (and neither did my type 1 housemate, can you believe it). I just emailed the endo with what was happening and he brought me in right away to start insulin.

I am hoping to get a pump also if it works for me (I need to try it first). I think I may even be able to get my insurance to pay for it in January. I had good fastings since I started testing in March of last year up until about three weeks ago. Looks like those days are over. I was hoping it would last until I got a pump, Oh, well.

[Lex4153]

Can you get a new GP? He sounds like he doesn't know even the basics of diabetes! Hellooo, type 2's are on insulin too!! Wow, that's really shocking he wouldn't write you a script for Lantus.

[Funnygrl]

You sound so much like me it's not even fun. I have the exact same characteristics as you. Though my endo decided I was probably type 1 anyways, and I was put on mdi right away, then a pump within a month. So I was labelled type 1. I have no idea what my current label is, nor am I going to find out. I'm treated like a type 1, and that's what matters.

Hopefully your endo appointment will go well.

[lilituc]

Can you get a new GP? He sounds like he doesn't know even the basics of diabetes! Hellooo, type 2's are on insulin too!! Wow, that's really shocking he wouldn't write you a script for Lantus.

Yeah, well I found out he probably doesn't even know what Lantus is, so when I was telling him I needed Lantus he was probably thinking of NPH. Yes, I'm definitely going to find a new one.

[lilituc]

Thanks for the help, FG. I'm not sure I would have believed it was LADA without everyone's input. There really isn't that much out there on it.

[BlueSky]

Wouldn't a simply phone call from the Endo change thr GP's mind? GPs are supposed to take advice from specialists. :)

[lilituc]

Wouldn't a simply phone call from the Endo change thr GP's mind? GPs are supposed to take advice from specialists. :)


Of course, but the endo wants to see me first and he doesn't make phone calls like that. I expect it's because endos actually *lose* money instead of making it due to the insurance reimbursement structure. He literally can't afford to work for free. I totally sympathise with him.

Part of why I am not confident my GP could just learn more about diabetes and everything would be fine is that he did not consult an endo about this before saying no. Most GPs I've had know one and would call and verify something they didn't know.

[mary1812mary]

My thoughts, exactly!

[David_S]

I tested neg. for antibodies as well. I took an article to my endo appt. my wife found on the web. It stated that 10% of LADA test neg. for antibodies. The endo agreed that was probably the case.. because it also stated if the patient tested neg. for antibodies and had high c-peptide than it was type 2. I tested neg for antibodies but had low c-peptide. He said I was def. type 1.5. I am tall, slim , lost 15 pounds in 6 months, 37 yo. I exercise almost daily as a mail carrier.. walking. I do not fit anyhting about type 2 at all.

[Cyborg]

Good luck tomorrow. Hopefully the doctor will work with you rather than against you.

[lilituc]

I tested neg. for antibodies as well. I took an article to my endo appt. my wife found on the web. It stated that 10% of LADA test neg. for antibodies. The endo agreed that was probably the case.. because it also stated if the patient tested neg. for antibodies and had high c-peptide than it was type 2. I tested neg for antibodies but had low c-peptide. He said I was def. type 1.5. I am tall, slim , lost 15 pounds in 6 months, 37 yo. I exercise almost daily as a mail carrier.. walking. I do not fit anyhting about type 2 at all.

I don't suppose you have a copy of that article, do you? But thanks anyway!

[lilituc]

Good luck tomorrow. Hopefully the doctor will work with you rather than against you.

Thanks. I am hoping he will see how much this wrong diagnosis is having a negative impact on me and not be so rigid about the antibody test.

[Funnygrl]

So how'd it go?

[lilituc]

I am about to fall into bed so I won't go into detail now, but he is seriously the best endo. Once again he said he wished all his patients were like me. Ha, I wish all doctors were like him!

He did give me the Lantus scrip (he asked if I wanted that or Levemir), he said he couldn't just say I'm a type 1 because he had no proof (antibody test) so he said instead on the report that he is treating me as lada and that I am "in all probability an early subacute type 1 diabetic." That was good enough for me. He made it really, really clear on the report.

[lilituc]

So, I win. I got to see the endo without the nurse so I actually got about 15 minutes. It was amazing. He's seriously the best endo. You guys, a good doctor is worth their weight in gold. He is one of the few people (other than on here) who really understands how hard I work at this.

So other than the above, he told me they just did a writeup of an Edmonton protocol study saying that people who retained some small islet function later on were diabetic again but no longer had dangerous hypoglycemia, i.e. some insulin production will prevent it. Which is why I need to take care of my beta cells by being on a long-acting insulin. He said that he thought my numbers looked great for pregnancy (he always discusses pregnancy with young female diabetics), although I personally disagree. He said his only concern would be that psychologically it would be tough for me to handle. We've never even discussed that, but he's absolutely right. The constant insulin dose adjustment and running really low would drive me nuts. I'm definitely not ready for that. He did say that I would need to be on a pump and wrote it on the report, I think to emphasize that pumps are Good.

He said that I'm an excellent candidate for an insulin pump and he'd write the prescription right there on the spot, except my insurance won't pay for it until January. He wants me to keep him updated, and he said to let him know when I get my pump.

I will get the Lantus filled when we get back to Seattle.

[Funnygrl]

Excellent! Sounds good. What dose of Lantus are you starting on?

[lilituc]

Excellent! Sounds good. What dose of Lantus are you starting on?

5 units. He even wrote on the report that I can adjust my own dosage.