Seeking stories of misdiagnosis

Type 1 and LADA
121

Well, I had a visit with my endo this week and learned about my test results. My endo ordered a GAD65 as well as another c-peptide. My GAD65 came back negative, which, with some level of confidence shows I am not an autoimmune diabetic. I would have liked to resolve my ongoing saga, but my story continues. I had thought I was seeing improved blood sugars these last three months, I’ve been very disciplined, following Dr. B’s diet and exercising. I’ve been using Intermittent Fasting and I’ve lost several pounds, now wavering right at 200 lbs. But this segment of my story remains curious.

My HbA1c and fructosamine are unchanged, despite moving from 2 to 3 medications.

My HbA1c is still the same as when I started with this endo on year ago and we initiated all this medication intensification.

My c-peptide came in at 4.5 ng/mL, with a fasting BS of 131 mg/dl. My last measurement was 1.8 ng/mL at a similar fasting. My endo now declares me “severely” insulin resistant. Of course, he said the low reading of 1.8 also “meant nothing.”

I again reminded him that I was fine moving to insulin and would like to get my fasting down, he refused, noting that insulin causes hypos and will make you fat. He gave me three options, increase the Actos, switch the Byetta for Victoza, and/or he would prescribe the Medifast weight loss program. He could not give me one good reason to back up switching to Victoza, although I will consider it. I agreed to increase the Actos, and as to the Medifast, I just shake my head. I am already lean. The Medifast is a medically supervised starvation diet. My endo is unfortunately not really competent on the weight, bodyfat, fitness thing. And the idea that he would even tell me on one hand I should avoid insulin because it will make me fat, but on the other offer to prescribe Medifast is just “weird.” If my fate is to suffer a medically supervised starvation, then just give me the d*mn insulin.

So this whole thing has been quite disheartening. I had hoped for some resolution, but my saga continues. Basically, up to this point, I’ve been able to achieve blood sugar control using diet and exercise alone, that have keep my numbers in a reasonable region, but things are getting worse. Although I have some neuropathy problems, I am not at risk of DKA and accelerated damage. But, none of the medications seem to work in the long-term. I will have a disruptive improvement, and then zippo. And it is this disruptive improvement that is weird.

I moved my Actos from 15 to 30 on Wednesday. By Thursday, my blood sugar had improved and I saw all the signs of a “honeymoon.” I’ve had these before. My fasting blood sugar drops 30-50 mg/dl to normal levels. My blood sugar no longer skyrockets with exercise, and I can eat “whatever” and still have my blood sugar return to normal levels at 2 hrs. This has happened before, it appears triggered by medicine changes and they last 2-3 weeks and this has recurred a few times.

None of my doctors believe this honeymoon thing. So, as you will see, I gave myself an OGTT (https://forum.tudiabetes.org/topics/human-self-experimentation) and passed, I am no longer diabetic (yeah, right). Last night, I had four maki sushi rolls (24 pieces), approximately 125-150 g of carbs and my 2 hr postprandial was 84 mg/dl. I expect in another 2-3 weeks, things will stop working again and I will be back to where I was.

So for now, I will drown my sorrow over my diagnosis failure by treating myself. I am going to eat some of those things I enjoy, but have placed in the off-limit column. And when my blood sugar takes a turn for the worse, I will return to my strict diet and my ongoing efforts to find out exactly what is wrong with me and how to treat it.

Thanx to all of you for your support.

122

Sorry YOU did not get the answers you were looking for. At least for now YOU are able to EAT what you enjoy…for a while. Its a tough roller coaster we are all on. Even on insulin, I still find it tough at times, and worry when my BS go high!! At least we have some fun passengers to “enjoy” the ride with!!! We are still here for you!!! Thanks for the update…have been wondering about you!!

123

You got checked only for anti-GAD? What about IA-2 and anti-islet antibodies? I know of people who test positive for the others and not GAD.

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I requested a full antibody panel, but was unsuccessful. My endo argues that all you need is GAD65. Of course, I’ve seen the literature, it takes all four (GAD65, ICA, IA-2 and IA-2β) to be reasonably conclusive, and even with that 5% of T1s test negative for all 4 antibodies. The GAD65 is perhaps 80% conclusive.

In truth, one has to ask why exactly medication changes trigger my honeymoons. I appear to full recover of 2-3 weeks and if I truly had a virtually non-functional pancreas, one has to wonder how that could be true.

125

bsc,

Did your endo have you stop all of your existing med’s for a period of time before administering your c-peptide test? Do you ever has any incidents of hypo’s? Seems weird that you went from a normal 1.8 ng/ml to relatively high test with the 4.5, yet have to deal daily with high fasting blood surgars. Something is not as it should be. Keep pushing for answers.

Maybe the only thing keeping a T1 or T1.5 diagnosis at bay for the moment is the lengths that you have been going to with diet and exercise. At least you know all the signs to watch for and act on in the event your situation changes.

Cheryl

126

I always was diligent about yearly physicals. I had had my regular physical in September 2007 at age 45. My doctor always checked A1C and blood glucose and I was perfectly fine – no sign of diabetes. I had never had a problem and there was no diabetes in my family. But that November something went very wrong. Usually high energy and unstoppable, I reached the point of absolute exhaustion. I was getting terrible leg cramping. It wasn’t until December that I got the more recognizable symptom of frequent urination. I finally saw my GP in January and she suspected diabetes right away. The A1C took a week to come back. It was 12.7 – no question I had diabetes. That was the only test that was run. I was never steered toward an endocrinologist. In fact, the day she told me the results, I picked up the oral medication at the drug store and jumped on a plane to California for week on business. I was so so sick, had no idea even how to test my glucose or what the numbers meant, and had no idea what I could eat. It was horrible.

I had a very brief honeymoon period with oral medication where I got my A1C to 7.8 but then everything went haywire – this time super out of control – blood glucose soaring into the 500s. Went through 2 endocrinologists tyring different things. Finally my 5th doctor (my 3rd endocrinologist) had the sense to test me for not only Type 1 but also to run a full metabolic panel. Sure enough I had the GAD antibodies, my cpeptide numbers were virtually MIA, and on top of it I had a T4 of 500, and Vitamin D3 of 7 (yes, 7!!!). Turns out I was Type 1 (LADA), had hashimotos, and a serious vitamin D deficiency. Not only did this new doctor get me medicated properly she also saw to it that I got the eductation to manage the disease-- my CDE is amazing! And I finally have control and, in fact, will switching to the pump soon. It took me 5 doctors and 2 1/2 years to get to a good diagnosis and control over my health. In fact, I didn’t even realize how sick I was until I started feeling better – WHAT A DIFFERENCE! I cannot help but wonder why it was only one doctor out of 5 that thought deeply enough to run those extra tests. I would have been spared so much if any of the 4 before her had just taken that extra step. .

127

I started feeling sick in February, 2005, mainly after eating lunch. I’d been eating lowish carb for years, but one day I had dessert at a restaurant, and was so ill my roommate (T1) said as a joke, “you have diabetes.” He gave me an old meter, and I tested a lot over the next few weeks. My BG was definitely high after meals. I went to my doctor (who was excellent), but he said that he couldn’t understand what was going on because I was underweight, exercised a lot, and ate few carbs. So he sent me to an endo.

The endo I saw three months later kept me waiting two hours, then spent less than five minutes with me. He said I was a typical Type 2 with insulin resistance, needed to eat 180g of carbs a day (way more than I was), and exercise 30 minutes three times a week (way less than I was) to treat my Type 2. I know he heard what I said I was doing already because I have copies of his reports. I wanted to treat it aggressively, but he said no one with BG under 300 most of the time needed medication.

It wasn’t until December 2005 that I got so sick that I realized what a useless jerk this guy was, and found another endo. The first thing he said when I walked in was, “why aren’t you on medication?” He had me try all the T2 meds since my labs were inconclusive, but none of them worked and I finally went on insulin and got my LADA dx June 2006. It was like a miracle. I felt better almost immediately.

128

Lili, when I was first diagnosed nearly 18 years ago, I was also told that you needed a certain fasting bg level before they’d be willing to put you on medications. In my case, that level was a fasting of 200 mg/dl. My fasting bg came back at 195 mg/dl – just below their cut off. This is in spite of having post prandials nearly 500 mg/dl. Huh. You’d think the docs would know about statistical concepts such as “standard error” and would know that no measurement is “perfect”, so that when they saw a reading that close to their cut off point, they would have said, “Close enough for who it isn’t. You’re going on insulin.” Would have saved me a lot of grief over the next 17 years.

129

I may have told my story somewhere else here, but can’t find it so here’s a summary. This happened when I was living in Virginia. Have always had challenges with reactive hypoglycemia my whole life, got very cranky if didn’t eat regularly or didn’t have enough protein in the meal. This got very bad at age 37. I was vegetarian and couldn’t eat anything without getting terrible hypoglycemic symptoms (I wasn’t going low, but my sugars were dropping quickly). Lost 30# in 3 mos and doctors were of no use. found a low carb vegetarian diet to follow and controlled the symptoms. Had 2 surgeries in a 6 month time frame-oct 2003 and apr 2004. Never felt the same after the first one, like I never really rebounded. that summer I felt more dragged out than I ever had in my life. Went to new doctor and she ordered 5 hr GTT. Fasting sugar was 176 She said try diet and exercise for 3 mos but she didn’t seem that with it so I never went back. Went to a new doctor and he did some more bloodwork (one for “insulin antibodies” [that’s what it said on lab report, not specific like GAD]) and it was normal so with being a little overweight and family hx of type 2, that’s what I was dx as. Kept losing weight gradually without trying to. Kept complaining that I couldn’t eat any carb rich foods without sugar skyrocketing but he said a lot of people were like that. doc kept on saying I didn’t fit type 2 profile-all bloodwork was normal (expcept for sugar of course) When I got down to 115 or so (I’m just 5’5") he had the nerve to ask if I thought this was a good weight for me…well, after a year sugar skyrocketed to 200-300 no matter what I ate or didn’t eat. Was tried on Avandia (which I didn’t want to take as I was aware of the heart concerns) but that did nothing. Weight went down to 109 and I looked like I had just come from a concentration camp. In the meantime I had made an appt with a new endo in town. I knew of the other ones and knew I couldn’t work with them. One “fired” patients and I’m sure she would have fired me!

Endo said I needed to start insulin so started on Lantus and sugar came down immediately and I felt like a human again. He took more bloodwork and my GAD level was 3x the norm and he said I was type 1.

130

I was diagnosed as Type 2 just over the age of 50 by my house doctor. I’d gone in with a severe foot infection and was mildly overweight BMI around 29 and the fact that she diagnosed (correctly) diabetes with a foot infection was to here credit. So I was initially treated as type 2, with Metformin, diet and exercise. I tried varieties of other type 2 medication but my HbA1c kept on going up.
I finally went to my current Endo who took one look at me (by this time my weight had gone down 20 kg to below 80 kg) and he said “You aren’t type 2”. He did antibody tests to confirm this and I’ve been on insulin since then. He wants to keep my insulin levels low, so I’m now also on Januvia (unusual for Type 1.5s) and Metformin.
Recently went on to a pump and my insulin doses are practically 20% less than when I was injecting, so that is rather good news.

131

I was almost 100 pounds heavier than I am today. I have two sons 14
and 20 whose pregnancies were gestational. I carried this weight around
with me for many years, knowing that because I was gestational with
both pregnancies, the likelihood of being diagnosed as a type 2 diabetic
was very high. About 5 years ago, I was diagnosed with Type 2. I was
advised by my dr. that if I didn’t lose the weight, I would need to go
on medication. So I started my weight loss journey. My A!C was going
down, I was exercising, eating well. I eventually went on Metformin and
Byetta. But towards the end of last year, I started to feel really
awful. No energy, foggy-headed, hair falling out. I got out my glucose
monitor which I hadn’t used in about a year. My fasting was in the
high 200’s! I went back to the dr., My A1c had shot up to 8.4 from
6.2! He did the GAD and cpeptide tests (i think that’s what they’re
called), and turns out I’m LADA! In April 2010, my whole world changed
with one phone call. And that phone call didn’t come from the doctor,
it came from his nurse! She asked me to come in to get started on
insulin. She said I didn’t need an appointment. I thought that
strange, but went into the dr.'s office. She calls me in to her nursing
station, and hands me the insulin. Okay-so what am I supposed to do
with it? No discussion from the dr. on how much to take, how to use it,
etc. Now, I had been taking Byetta shots, so maybe they just assumed I
would be good with giving myself insulin shots. The dr. came by the
nursing station, and without looking at my chart, suggested I start with
20 units of Levimir at night. So that night I went home crying, shot
myself up with 20 units of Levimir and woke up in the morning shaking,
vomiting and in a pool full of cold sweat! I was having a hypo, which I
wasn’t prepared for! Since then, I’ve been to two other doctors. Dr.
#2 with further bloodwork diagnosed me with Hashimotos. So I’m now
battling two diseases and still have neither under control. I take 10
units of Levimir at night, 1.2 Victoza (dr. says it will still help
preserve what little beta cell function I may still have), 1,000
Metformin 2x a day and anywhere from 2-6 units of Novolog before meals
depending on what I’m going to eat. I still have random lows in the
morning and cant figure out why. My 2 hour post-meal dinner blood
glucose is almost always high (220-320), regardless of what I eat. I
still don’t feel back to normal yet, despite being on Armour for thyroid
for about 2 months now. I am very frustrated with it all, and have
bouts of depression about the whole thing, knowing I’ve got this for the
rest of my life! It helps to come on these boards now and again to
hear others tell their story because it allows me to feel a little less
alone in the whole thing. I wish there was some sort of support group
in my area, but I guess the computer is going to have to do for now.

132

Hi Gayle and welcome!

First I just want to say that I understand what you're going through, as do a lot of us on Tu unfortunately. Being diagnosed with LADA and Hashimoto's is shocking and it does take a while to come to terms with. Not having clear direction and support from your doc(s) is also incredibly frustrating and frightening.

The good news -- many of us are months and years from the point you're at now and we're here to help you through.

My advice (and please take it or leave it, I'm not a doctor):

In case your doc hasn't explained it to you: levemir is a basal insulin, used to keep your blood sugars under control during the times when you're not eating. Levemir is supposed to last for 24 hours, but I too had the same problem of high bgs after dinner and realized that it was because my Levemir was wearing off. I take more dinner time insulin to compensate and that seems to work well. For example, if I eat a piece of whole wheat bread for breakfast, I need 1 unit of novolog insulin. If I eat that same piece of bread at dinner, I need 3 units of novolog. There are other ways of dealing with high or lows bgs at certain times of the day, so don’t feel like this is a problem that isn’t fixable because it is.

I highly recommend the book “Think Like a Pancreas” because it explains how to set proper insulin doses and how to fix some of these common problems. It’s written by Gary Scheinder and you can borrow it from the library.

I’m not sure why you’re taking Metformin. It’s a drug for Type 2s. I would ask your doctor why you’re on it. I was diagnosed with LADA after I took Metformin and it had no effect on my bgs.

I felt like my doctor down-played the Hashimoto’s when I was diagnosed as well. It does suck and it took me a good 3,4 months before I felt like myself again. It’s been more than a year since I was diagnosed and I haven’t had any problems since then.

Hang in there!

133

thanks, kelly! it's good to hear from someone that is going through my similar story. i will definitely get that book.

i did go to a 3rd dr. my first visit with her was last month. i really liked her and she seemed to be everything i would want in a dr. however, she's only in the office once a week! i had questions after we met, and it took over a week to get a response from her, and it wasn't from her, but from her nurse. unfortunately after the 1st of the year, my insurance is no longer going to be affiliated with her medical group. so i'm back to square one again about finding a dr. one thing she did change for me: i told her about my higher bg's in the evening. she gave me a prescription for lantus; said levimir was causing problems with some patients and that it wasn't truly lasting 24 hours. i haven't started lantus yet to see if it makes a difference. but you may want to make the switch too and give it a try. i don't know what's better; switching to lantus, or just increasing my novolog before meals. the other problem i have with the novolog-often times after i take it, i get very jittery and my heart starts to race. and i don't take very much-just 2-6 units before meals. taking 6 is very rare; most meals i take 2-4. i also notice my ankles after taking it too. do you experience anything similar?

thanks!

134

I'm so glad that you asked you're doc about Levemir because I figured that out on my own but thought it was just me. For months I thought I just messing up my insulin dose at dinner. Good to know I'm not crazy!! I'm actually am just doing things this way because I'm starting on the pump this month, so it wasn't worth my time to switch.

Racing heart and jitters are symptoms of low bg. Do you check your bg when you start feeling this way? It may mean you're taking too much insulin. If you begin to feel this way you should treat it with quick-acting sugar -- which your doc should've provided info for you about.

Again I think you should speak to your doc about Metformin. The timing of your insulin and taking Metformin may be causing your lows.

135

Welcome Gayle! You can get lots of good support here. Regarding the long acting insulin, you can split the Lantus dose (two injections per day) to get full coverage. I know that means an extra injection, but it does provide better coverage. You might search the discussions regarding your reaction to Novolog–I recall others having swollen ankles with an insulin, but I can’t remember which.

136

Hi Gayle,

I'm sorry to hear of the challenges you've been having. I don't have any diagnosed thyroid problems but I would sometimes have the same problem with the NovoLog after taking it-feeling jittery and like my heart was pounding or more like thumping. I don't notice it so much anymore since going on the OmniPod. I think having the much smaller doses of basal insulin all the time has been easier on my body.

Regarding the Lantus vs NovoLog question. You may well know but the 2 are not interchangable. You would up your NovoLog dose if your 2 hr post meal sugars are higher than 40-50 pts from your pre meal sugar. You increase your Levemir or Lantus if your fasting sugars are above your goal or if you notice that your sugars start running high 12 hrs after you take it meaning you might need to take 2 doses 12 hrs apart.

137

When I first got sick the doctor Dx it type2 .I followed the plan faithfully and still only was getting sicker And nothing seemedto fit . The more I searched for answers the more the word LADA keep popping up. I brought it up to the doctor and he told me point blank adults can’t get Type1 diabetes ,only type two . I asked for GAD test and check for anti-bodies . He said it was a waste but I told him it was my money my time to waste . After much debate and threats of finding another doctor ,I got the test. I was right ;LADA! Once I started being treated as type1 I started getting better!

138

Thanks for that last part, David. I’ll try to do a split dose. Because I’ve tried to increase my levemir, and it just causes me to have lows in the middle of the night and mid-afternoon, but still high after dinner.

139

It’s amazing to me how many of us have to go through such hardship with our doctors. why is it so difficult to get the right care? why can’t they listen to us when we know our bodies? david, i’m glad you’re feeling better. i’m hoping to get there someday :).

140

Gayle,

I'm sure you'll get there. It's been a real roller coaster ride for me, health wise for the last 15 years or so, and I can now relate it all to the slow onset of the diabetes and the strain my body went through while being mistreated as type 2. I'm finally starting to feel somewhat like my old self again since being on the pump. I know how discouraging it can feel but I'm cheering for you!