Coming to terms with a change in diagnosis from Type 2 to LADA 1.5

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#1

How do people cope with a change in diagnosis. Is it viewed as a better understanding of their diabetic issues? Does it help explain the "insulin resistance" issue?, does it somehow, make YOUR diabetes easier to understand? Does this change in diagnosis cause MORE issues? How did you cope with your diagnosis of LADA 1.5 ?? Was this a change in diagnosis?? Was this an initial diagnosis? Did you have to immediately change to insulin? If you did not have to immediately introduce insulin to your medical regimine, how do you know when you need it?

If you are new to insulin, how were you taught to give yourself shots, learn about lows assoc. with insulin, learn how to use different kinds of insulin.???

I would like to hear from others. Here is my story....

I was diagnosied Type 2 in 1977. I didn't pay a lot of attention to that diagnosis. Was told I have a touch of diabetes. Keep in mind with was several years before the advent of glucose monitors. I really did not get a lot of instruction.. I knew my grandfathers sisters had diabetes, had heard the word at least. In 1996 the diabetes changed a lot....meds to insulin. Lost 60+ pounds and off insulin, diet/exercise controlled, and ended up playing with the medicine and insulin issues to the point I was living on close to a no carb meal plan to maintain my AIC at 7.....2008..........a protein diet was not working and the AIC were climbing.... enter the ENDO...........lots of blood tests later.... rediagnosed Type 1.5.... was in the process of a move and a promise to see a ENDO in the new state. Handed my labs and told to make sure and give them to new doc.... LIFE HAPPENS....m oved in Sep 08-----did not make it to the new doc... still thought I could do it on my own........May 09 uhmmmmm We have a problem NASA............AIC 11.7 uhmmmmmmmmmmm PANIC. Recent change in doctor left this lab in the cracks of health care electronic medical records...........went un noticed... in records shuffle. Nov 09 became aware of test and PC put me on 5mg of glyburide once a day.............went back complaint of high blood sugars....still... wanted to put me on Avandia.....wrong... I am a cardiac patient.............HELLO DOC....when I questioned this I was told to see a specialist...

I fired the doc... after we agreed on a referral to an ENDO>...........enter new PC.....who believe she can do it ALL..... has never heard of 1.5 dx......put on insulin.......no instruction............does not believe in returning calls following a BG of 34.....

went and found a diabetologist.... got the insulin stuff straightened out some..... waiting for an ENDO appt in Mid May.... Thyroid has now began LOW FUnction.....gee, must somehow be related to my weight gain? high blood sugars, fatique, brittle nails, dry skin,.... ask PC for referral to ENDO.... refused, I can treat this........ went around PC to get the referral. PC were not meant to handle it all.... I am classed a brittle diabetic already and now the thyroid malfunction..... I believe I deserve to see a doc that knows about this stuff.............not to discredit my diabetologist who is a DO.... plan on keeping him also.

THe 1.5 LADA was confirmed by diabetologist....................DEPRESSION HIT LIKE A TON OF LEAD............ why 2 years after the fact..............because somewhere in the back of my "one working brain cell mind" I did not believe I was going to be on insulin the rest of my life.... that some how diet and exercise was going to fix this....I am doing much better this week, but folks, I have to tell you...........the confirmation sure knocked the wind out of me for a few days... I had a really good one man pitty party..... eventually went and grabbed my "big girl panties" and took a second look at my options. Hey, I am upright, I am mobile, I am reasonably healthy, and I can still do for myself, still make choices and decisions, and still be active in my care plan..................ain't so bad after all..... just looking for information as to when the 1.5 changes i.e., insulin 5 times a day, and living with a glucose meter as my right hand will quit being the focal point of my life.... THe fact that I am diabetic never troubled me a lot..........the fact that i am now eating, drinking, and breathing carbs, correction, bolus, etc.... makes this disease a focal point of my day more times than I care to mention....bothers me. I trust that this too shall pass and somehow become just another part of my life such as taking my meds................ just some thougths..........care to share?

#2

http://brdiabetics.ning.com/ here is some info for ya and yes it will get better when you get controll of it all. how long will it take there is no answer to that as it is up to your body :slight_smile: all the luck with your new adventure in life.

#3

I know this is a difficult time for you, and I wish you hadn’t had to go through this. If only diagnosing diabetes were as easy as pointing to a broken leg on a chair! You are not alone in having been misdiagnosed. You’re not even alone in having been misdiagnosed for a very long time.

I was diagnosed 17 years ago today with diabetes. At first I was told I had type 1, though I wasn’t starting on insulin. Why type 1? The endo I saw said mainly it was because of my relative youth (I was only 26) and the relative speed and severity of the onset of symptoms (within 6 months of noticing the changes). I wasn’t starting on insulin because the fasting test I had the following day wasn’t over 200 – it was only 195. This was despite fairly rapid weight loss – 40 lbs over about 6-8 weeks on a 4’8" body. A few years later, I would have my diagnosis changed again – to type 2 --by a family doctor who reasoned that only people who are on insulin are type 1s/insulin dependent and I wasn’t on insulin. He ignored my post-meal highs of 200+, dismissed the need for any testing beyond the A1c, and didn’t think that it was a problem that I was now down to 88 lbs. All I needed to do was to eat more, even if that meant higher post meal bgs! Oh, and I was to stop testing and ignore those numbers. “Why punish yourself?” was his mantra. When I went back to graduate school, and found myself once again exhausted, drinking far too much fluid, and using the bathroom practically constantly, I went to see another doctor, who also refused to run a c-peptide test or GAD antibody tests, calling them “too inexpensive, too inexact, and a waste of time!” He decided he should simply start throwing every variety of oral medication at me for at least 6 months at a time, because that was the only way to tell what medications would work for me.

It wasn’t until I found a (female) doctor that I finally started getting on track. It only took nearly 15 years! She ran the c-peptide test (which wasn’t that expensive and didn’t have to be run as part of some study) and we found my c-peptide to be below normal. When we finally decided that the metformin the other doctor had forced upon me wasn’t working like it should, and that adding Lantus to my regimen wasn’t enough (duh, since my big problem was post-meal highs!), I was given an appointment with a diabetes educator, who would help me work up an MDI regimen. She was of little help, since she was very uncomfortable designing a regimen with a 1:50 insulin:carb ratio! She brought in her boss, who decided the doctor was wrong and that all I needed was Symlin, Januvia or Byetta and low-carb eating – despite the fact that I did not want to lose weight! She (angrily) got me an appointment with an endo in the area, though she told me he’d say the same things she said.

It was that endo who finally gave me my type 1 diagnosis. When he saw me and when he saw my c-peptide levels, he had very little doubt, though he did say that I am a most unusual case – definitely not what he would have expected from a type 1 and not quite what is expected from a person with type 1.5. For me, being told I had type 1 and starting insulin was a relief. I knew I would feel better, I knew my bgs would start coming in line, I knew I would not face the prospect of fighting a losing battle with bgs that could range anywhere from 65 in the AM to 365 after eating. I was grateful that someone had finally looked at relevant data and did not jump to conclusions based on irrelevant surface features.

What I find bitter is that it took so long to get a doctor to finally say, “YES. This is not acceptable and here is what can be done about it.” It is bitter because I do have reduced sensation in one of my feet – neuropathy that might have not happened if I had had a doctor who was more willing to ask questions and less willing to do his job while stuck on the “automatic” setting. It is bitter because no one can know exactly what other damage has been done by the lax attitude my health care providers have had toward my diabetes management.

This is the Easter and Passover seasons, though. Remember those stories and think about what came out of each of those instances of bitter events. It’s something I do, particularly around my anniversary date. It’s OK to be angry and bitter over this change. It will end, and you will feel more “normal” about this change than you do now.

#4

It is amazing how many doctors disregard the post meal blood sugars. That is what I am dealing with right now. I am on a 1:10 ratio right now and still my post meals are in the mid 200’s. I do not eat more than 30 carbs and a lot of the time less then that. The sugars dont even start coming down for at least into my late 2nd or early 3rd hour… I am also having trouble with dawn syndrome. I am one of those people when the sugar finally begins to fall it is like an elevator free fall feeling. Hate it. Thus testing frequently… oh then there is the fact I am going to be out of strips before we figure out what is going on… I am not bitter per say… it bothers me that right now I am LIVING 24.7 the effects of insulin either working too well or not to well…I am on 28 of Lantus AM and PM and Novalog High SS + bolus 1:10 at every meal…my PC right now, until I can actually find another that accepts medicare… told me outright FINALLY that she didn’t know what to do with me…I had already figured that out. She still will not refer me to a ENDO so I went thru her office manager…who did give me the referral… now have to wait til May 19, tho they did also put me on a waiting list…

When I started gaining weight a few months ago it was blamed on the fact that I was getting my sugars under control. 256 is not what I consider control… have since found out the Thyroid is acting up big time… level was 8.229 Oct 29 and March 19 was 15.887… so she wantsme to start Thyroid med for underactive thyroid… still no referral… are family docs so afraid to share the pitiful medicare dollar that they risk their patients > maybe that is not fair… but it sure feels this way.

For you insulin was a Rescue… and for me too. I am still having a hard time getting used to counting everything that goes in my mouth… I always maintained weight and blood sugars by eating 6 meals a day…small ones but worked for me… on insulin that is hard. Maybe when I get to the Endo will be able to figure that out. Smiles, Pam

#5

Well you need a doctor like mine as medicare will pay for lots more you will have to go thru liberty mutial for it to happen. My doc has me keep a record of what i eat what time how much insulin i take when and why how i felt along with bgL and bgL 1 hour later.

  1. it is important you eat, test and take med the same time every day with in 30 minutes for at least 90 days
  2. have a good relationg ship with your doctor
  3. if you are having low’s take a little less as you can always take more

here is my schedule for expample that works for me

08:00 42 units Levemir
Eat my oatmeal adn wheat toast and 3 cups of coffee with creamer(half and half)
09:45 40 units Humalog

12:30 eat lunch my largest meal of the day soda 24 oz

15:30 snack

18:30 dinner 12 oz soda
19:30 walk
21:00-22:00 Levemir 45 units / humalog 40 units
one piece of fruit before I go to bed with a glass of water