Wonderful post Cherise! Thank you for sharing your story. Mick
Dee-
I am sorry it took so long for you to be DX. I am glad it was caught! I am happy you haven’t had an complications! I know you can bring those A1C’s down.
Hi Cherise
Well, my Endo called after recieving my last weeks worth of BS numbers, he started me on Novalog. I shot up right before dinner tonight for the first time. Today I am really high. BS were at 333 before dinner. 337 two hours after the novalog, and yes I feel awful today. He did not have me stop the Metformin, but at next week’s appointment we will discuss it again. It feels like I am moving in the direction that all the other LADA people seem to move.
I am nervious about shooting up at work tomorrow. It you can believe it, I am scared of going low. That may seem silly with the kinds of numbers I have been having, but that does worry me. My work is fast paced and many days I do not have time to check BS before lunch and lunch is always on the run.
Did you have trouble sleeping with all the shifts and changes before getting on the pump? I guess it is the stress. Thank God for this web site. Being able to talk to others has really helped and instead of feeling like a failure when they said to start the other insulin, I knew it was the right choice or at least what everyone has been saying here and that really helps.
Hi, I was also diagnosed with LADA in a similar story around infection ( upper respiratory ). My doctor diagnosed me over the phone but did not tell me but urged me to come in immediately for a blood test. He did the test, gave me the “bad” news, called the hospital and had me admitted, all within one hour. My BG was 500.
Following in JDavids foot steps here are the stats:
Here are a few Characteristic’s of Type 1.5/LADA:
-Adult age diagnoses
I was 40 in Nov 2006. Diagnosed on July 16, 2006.
-
Lean body type.
I weighed 140lbs on a 5ft 4 inch body. -
More abrupt onset of high blood sugars, at the time of diagnosis, perhaps even DKA.
I had an upper respiratory infection and was definitely in DKA. It took a week to get the ketones down.
-Less likely to achieve good blood sugar control with meal planning or oral diabetes medications.
I actually had no problem with this. My A1C is 5.1-5.4 and my 14 day average BG is 100.
-Positive antibodies against GAD-65 or islet cells.
Test came back positive.
-Low C-peptide levels – insulin deficiency versus the insulin resistance that is routinely seen in type 2 diabetes.
Yes.
- Less likely to have a family history of type 2
No one in my family has diabetes of any type. I am still on a honey moon but I am fanatical about control. I use about 18 units of Novolog and 18 of Levemir each day (insulin pens). I live and eat as a Type 1.
This thread get more interesting all the time…
I ended up in the hospital a 2-3 weeks after a sore throat, and went through HELL in the meantime and still to some degree after. I went on insulin almost 2years later, but it was NO picknic in the meantime.
Well that was over 28/26 years ago…still wnondering what pigeon hole I fit…told by some T-2 others IDDM (no type) and not sure I want to know now, since I am on MDI lantus 2x and humalog 3+/day and BS wise he best ever…(I say BS wise 'cause I am not feeling the reatest and kidneys are in decline)
Next week its the pcp and nephrologist, apt moved up due to labs, then in just over a months time teh diabetes cetner, retina doc, then cardiologist…gonna be a busy late summer fall AGAIN this year.
(&( GOMER wonder what percentage here wer precipataed by “just” a SORE THROAT?
I’m a graduate student. We are extremely underpaid, and sometimes take part in other ongoing research trials as “normal controls” and get paid anywhere from $17 to $500 depending on what we are asked to do and what is being tested.
My third year in grad school I signed up to be a normal control for a study on diabetes and lipid metabolism. The study included 3 days of a specialized diet, an oral glucose tolerance test, a euglycemic insulin clamp test, an MRI of the abdomen to determine fatty liver %, skin fold testing to estimate %fatness, and also underwater weighing for even better fat% determination.
We test subjects had to stay in the hospital for 2 nights and would get paid ~$240.
After most of the test was done, they did the OGTT. I didn’t get to know the results until the next day, when I was strapped into various IVs and they were performing the insulin clamp test to test my insulin sensitivity. The main researcher walks in- and starts talking to me. I casually mention that I would like to know what they results of my OGTT from the previous day were- she says she will look it up. She finds my file, pauses for a while, and says she will discuss it with me later. I say, why, what’s wrong?
She continues to dance around- finally admitting that my OGTT was 240 2 hours later- putting me squarely in the diabetic category, and sorry, but I’m diabetic.
I say you’re crazy, I’m not fat!
She says, well maybe the test was screwed up- we’re measuring your insulin sensitivity now, maybe if you are still sensitive you aren’t diabetic and the test was wrong. my insulin sensitivity was good, not resistant. She offers to re test me- and do another OGTT. I tell her I will think about it and leave.
I’m upset and crying and then after it wears off- I get mad and start trashing her study (as only a another scientist is able to do.)
One of the people I work with is a pediatric endocrinologist. While loudly complaining about what a horrible study it was- I mention my test results. He looks concerned and points out that I really should retest. I think he’s crazy, and it’s all the bad study’s fault, but finally agree- so he orders the tests for me and I get them done.
The tests come back- fasting blood sugar is ~100 and the OGTT is 180.
At this point, I take this to him and ask what the hell is wrong with me- and point out, again, that I am not fat, and have no other signs of metabolic syndrome so I clearly do not have type 2 diabetes. He agrees, and says to have a fasting c-peptide and insulin test done as well as antibodies for insulin, islet cells, alpha gad-65 and IA-2A done.
I do these- the insulin is low but still here, same with c-peptide, and I am very positive for 3 of the 4 antibodies.
At this point, he calmly told me to start seeing an endocrinologist of my own and I did. It’s been 2 years since then and I am on MDI but still honeymooning.
Despite arriving at the endo visit the first time, armed with stacks of test results and scientific papers pointing out that am a LADA/ slowly progressing type 1- it still took almost a year to convince the endo that that is what I was.
Oh well- doesn’t change the fact that if I hadn’t volunteered to be a normal control for a study on campus my life would look very different right now and I suspect I would end up with a hospitial visit to find out.
jeanne-
I am glad your Dr added novalog! My bg’s were a little out of Wack but they bounced back. It’s going to take time. I wasn’t nervous about taking shots at work I encouraged my co workers to watch just incase! Don’t be nervous you can do it!
I didn’t have any trouble sleeping with the pump. I have the Omnipod and forget it’s there:) are you looking into a pump?
I just posted this video dealing with Type 1.5 (LADA), to complement this great thread:
I had an extremely sore throat just before I was diagnosed, what does that mean?
All of your post are amazing…I am still learning a lot about LADA!!! Thanks for sharing
My current endo has not sent me for C-Peptide or GAD tests, i’m a little shocked because i have Hashimoto’s Disease (Hypothyroidism) since 2005. I have Type 2 diabetes. Is there a chance that i will develop Type 1.5?
Luv2chichat-
You should talk to your Dr about running a C-peptide, GAD or have the antibodies test done. I know there are a lot of Type 1.5’s with Hashimoto’s Disease. It doesn’t hurt to find out. Let me know if you need anymore info and if you decide to have the test ran. Remember it’s your health not your Doc’s…
I don’t think that you can develop Type 1.5 if you are really a Type 2, but it may be that you were misdiagnosed. Hashimoto’s is an autoimmune disease and many of us LADA types have both hypothyroid and autoimmune diabetes. If you have the antibody test, make sure it’s the whole panel, not just GAD. I am negative for GAD but have islet cell antibodies. It is worth finding out for many reasons.
Libby I disagree about a T-2 becoming a T-1.5, here is MY personal opinion for what little its worth, why;
It’s not uncommon for a T-2 to loose some insulin making capacity, ie the pancrease stop producing as much, maybe due to being OVERLOADED/wearing out trying to deliver larger amounts of insulin due to insulin esistance.
That would be a seperate issue from LADA and the possability of MISSdiagnosis is all too common.
(&( GOMER an oddball among oddballs…a T-?
I am not sure if it is possible or not to change. But so many of us type 1,5’s have other autoimmune diseases as well. I think it would truly be in your best intererst to find out.
I am not sure either, not even the doctors seem to be very sure of many thing diabetes, even today…
I started going to the local diabetes center (where doctors send/dump) patients they do not want to manage their diabetes. The doc that referred me there looked at my records, said the previous doc had done a miracle (or sorts) with getting my BS levels good.
When I first went there, the endo simply said type-2 based on my looks (ok I gained over 50 pounds after starting insulin over 26 years ago). He did suggest doing a C-peptide but ONLY if I let my blood sugar go up into the 300s! I did not like the later part, so end of that. I had just recovered (mostly) from a case of mild DKA that had left me very weak for many months after getting over the fruitties (my term for DKA)…My A1c was only 8.6 and FBS was 140s before going to insulin w/each meal. I strangely keytone more like a T1 than a T2.
Even monts later a foot doc sent me to a specialist for testing thinking i might have a serious muscle disease/problem because one leg was extra weak.
FEAR…I know sounds sttupid, but for the first time since being Dx’d w/diabetes I am on a routine (MDI, Lantus 2x/day and Humalog with every meal) that WORKS (for me). Now after getting on a good level BS routine and OFF the spike and dive roller coaster, I DO NOT WANT CHANGE!
(&( GOMER
I am going to talk my Endo;) I am curious to know if you can go from being a T2 to LADA.
There was discussion about this on another thread. LADA is caused by autoimmune attacks on the pancreas. It is a slow adult onset variation of Type 1 diabetes. Type 2 is caused by insulin resistance. There is sufficient insulin but it can’t be used efficiently to bring down BG. In both cases, high BG can cause beta cells to burn out so a Type 2 can become insulin dependent. This does NOT mean that they have turned into a Type 1, as they still have insulin resistance and usually need much more insulin than Type 1s (or 1.5s)
LADA is interesting to be due to the following; (long and complex)
-1- I was Dx’d after not recovering from a sore throat.
-2- Onset of very high blood sugars, as far as I know) were abrupt.
-3- Diet and exercise was a disaster (an understatement IMO) If I had some fast carbs it seemed to stimulate my pancreas, but too much and I ran out (BS climbed) and also being strict with my diet also caused my BS level to rise and also felt bad, like mild DKA.
-4- I tend to keytone like a T-1, even thought I have/had some natural insulin.
-5- a pill(?) I took for a very short time, caused hypos at first but in no time m BS levels went up, not down.
-6- I began insulin under 2 years after the diabetes Dx when I landed in the hospital after drinking a couple oz of reg Coke.
-7- I was in my mid 30s too young for T-2 but too old for T-1 so I was told (remember we are talking almost 3 decades ago)
-8- NO known history of any test such as C-pep or antibodies.
-9- I was neither lean nor fat…and my mother was an insulin dependent diabetic, but I only found out AFTER my Dx. Do not know which type or anything else.
IN my case it’s even more complicated. My parents were divorced and the state took me from my mother, made me a ward of the state. I had not been into any trouble at school or otherwise, I was not abused & not neglected either. Problem is, the state had a problem finding a PLACE for me, was to go one place but ended up where the state had a BED while waiting to be place in a foster care situation. To make maters worse I landed in a cuckoo’s nest with a bunch of actual nut cases. (BTW all to similar to the movie One Flew over the cuckoo’s nest).
One evening after having dinner out with my dad (my parents visited me often and was allow to leave the grounds) I had bad abdominal pains. Appendicitis was suspected at first but it was in the wrong area. I do not know what they decided it was (he next day), one thing I was told after that was I would end up on shots. I did not want to know anymore and did NOT want to hear anything about any such garbage. (could it have been pancreatitis?)
A dentist there that did some dental work on my teeth said my teeth were going bad from the inside out. I was NOT diagnosed with diabetes, however elevated BS levels not high enough to be Dx’d with diabetes could have been related to BOTH.
In less than a year they found a home to place me in. Not a very good home either, worse than where they took me from, the father was an alcoholic. I came down with Hepatitis-A and hospitalized for 5 weeks, home for another 2 weeks, and when I returned to school I was watched over like a child and told that if I felt bad (forget the exact wording) to immediately go to the office. The rest of the family also came down with it but were all back to work and school in 2 weeks. I had a sudden vision problem (double vision prism glasses possible diabetes related), developed Psoriasis (possible auto-immune) and had a temporary problem (?) with one leg. My social worker asked me if I wanted to be exempt from the draft and told me if I went in the military I would not have to worry (VA joke) about future medical care.
Continued…
continuation…
I went in the Navy, but had to get a letter from the Dr to get in (while many were fleeing to Canada to avoid the draft). I became a GOMER right from boot camp, had a URI that was hard to get over (kicked out and re-admitted several times) and later in A school tossed out by sickbay doc for 10 days, till he saw me waiting for sick call, decided to ‘”prove” there was nothing wrong with me, marched me down to Xray then sent to the base hospital w/pneumonia. Poor medical care was one reason I left the Navy. I found work with a gas/electric company and one of their docs put me on a thyroid med after a test, but I quit the med, saw no reason for it after a couple months and never had to take it again. I did just fine for years, that is till I got a sore throat and eventually landed hospitalized for diabetes. Again it was a company doc that gave me hell, assumed I knew I was diabetic and life has never been the same since.
Sorry for being so long and verbose but I did say, my case and history is very complicated and may not fit ANY pigeon holes.
(*&( GOMER asks, Any ideas/opinions?