Misdiagnosed 10 years ago

Lex4153 · June 30, 2006, 2:22am

I'm new to the board and wanted to introduce myself and share my story. It's quite long and I've been through some ups and downs (mostly downs) but after ten years I finally received the correct diagnosis after struggling to control my diabetes throughout.

I was diagnosed as a Type 1 diabetic when I was 13 years old (on my birthday

). I tried to be pretty good, as good as a 13 yr old can be, and took my shots and watched my diet and I stayed pretty active. But it was so frustrating because I would go up and down, never staying in the middle. I was either too low or too high. I gave up after accouple years.

I stayed off insulin for three years. I didn't check my blood sugars and I didn't watch what I ate. I completely ignored my diabetes. I would go to amusement parks and eat a huge thing of cotton candy. I remember wondering afterwards why I didn't pass out or anything after some of my sugar fests. I knew something wasn't right but was too afraid to go see a doctor and admit that I was ignoring my diabetes.

Age changed that. about three years ago, I went to see an endocrinologist, determined to get myself on the right track again. I felt pretty good other than the thirst and frequent urination but I knew I was damaging my body. I confessed to the endo what I had (hadn't) been doing for all those years. He flat out told me I should be dead. He said there is no way I went all that time without insulin and I would be standing in front of him, let alone be healthy. But like I said, I felt completely normal other than the dehydration. He told me I was probably not a Type 1, that I was more likely a Type 2. He ordered a c-peptide which came back inconclusive but he said he would still bet money on me being a Type 2. I asked if I could try oral meds. He said if I couldn't control my blood sugars with insulin shots, oral meds wouldn't help. I believed him. He's the doctor, right? And an expert as well.

I started taking shots again and watched my diet and all that. But eventually I fell off the wagon again. The insulin made me crave food and the more I ate, the more insulin I took to fight high blood sugars. It just spun out of control. I gained weight and was like 20 lbs overweight. I went back to my former, unhealthy lifestyle of doing and eating whatever I wanted. Stopped the shots again. When I went out, I would order the most sugary drinks like daquiries and sex on the beach.

I finally went to see a physician assistant at my family doctor's clinic this recent April. I told her the whole story and she ordered a c-peptide which again was inconclusive. She ran another test, which I can't remember the name of (insulin antibody maybe?) which did indeed confirm I was a type 2 beyond a doubt! I remember getting the phone call and being so ecstatically happy, jumping up and down. I had HOPE again!

I immediately started on Byetta (5 mcg/2x a day) and Metformin (500 mg/1x a day). My blood sugars hovered around the lower 300's. The Metformin was increased to 500 mg twice a day. Still no change. Maybe slightly to the upper 200's. My side effects were minimal. The Metformin I was warned could cause diarrhea but for me it just made me more regular since I was always backed up. It was like clockwork.

I also lost 15 pounds in two months! I was sooo happy. My weight for the last ten years has been a yo-yo and was mostly on the upper end of the spectrum of normal. (5'6", 164 lbs when last checked down to 147 lbs accouple weeks ago)

Then the Byetta was increased to 10 mcg twice a day. My blood sugars instantly, that same day I started, went down to 120. During that week, my range stayed from 120-150, no jumping around! And I could eat, really eat, not starve myself, and I still didn't climb. But that's when the side effects really started. The Byetta really slowed down my digestive system so I was constipated. The nausea was the worst part. I threw up an hour after my breakfest three days in a row. I couldn't take it anymore and called the doc. They brought the morning dose back down to 5 mcg and left the PM dose at 10 mcg. Now my blood sugars are back up to the low to mid 200's. Tomorrow we're doubling my morning dose of Metformin to see if that helps.

I've been sooo happy to finally figure out why I couldn't control my diabetes before. I feel like I can finally start taking care of myself. It feels so good and I am in such debt of gratitude to the physician assistant who helped me.

I'm also extremely irate. How could the endo not help but the physician assistant could? Isn't he the expert? I'm also mad at all the doctors that made me feel like such a failure when I was on insulin. Made me feel like I was just being lazy or stupid. I'm mad that the hospital just assumed I was type 1 because I was 13, even though they knew my great aunt was also diagnosed at 13 as a type 2. Mostly I'm angry because to think I've done sooo much damage to my body all this time. I had also struggled with thinking I had an overeating disorder. But the whole time it was from the insulin.

I have so many questions. How much damage have I done to myself after the last ten years? Is it a wonder my pancreas is still functioning? Why did the endo say that oral meds wouldn't work?

I'm so glad there are forums like this out there. Thank you for getting through this whole post! I look forward to chatting with you all. And don't forget, the right doctor is EVERYTHING! If you don't like the one you have, get another!

desertdiabetic · June 30, 2006, 3:01am

Welcome to the forum

You will hear over and over again how the medical profession didn't "get it right" the first time, or two. Sadly, that is just the way it is. When it comes to diabetes doctors are sadly far behind the curve on what to do and when to do it. Yes, you will find great doctors out there - and you will find doctors that should not be treating diabetics.

Once you get over that it comes down to what do you do about it now. When they say that it takes upwards of 10 years to diagnose you can say that is surely true for you. The sad part is you probably have more chance of complications than had they diagnosed it correctly 10 years ago. Maybe, you did stop taking care of yourself for a few years, type 2's can do tht also. We will never know because you might have had a much better experience and not stopped taking care of yourself. That's just history at this point.

The rules for eating and what you should consume don't have to be any different for a type 1 or a type 2. That brings out some difference in thinking from type 1's, but controlling what you consume does affect both types and limiting the 'bad' things works good for all of us. It is better for non-diabetics also - different attitude for a different day though.

I have no experiece with Byetta so I cannot comment on any of that. I am just an observer for now.

Where do you see yourself now that you are on the right track? Myself I am doing what I can to prevent using Byetta. Not because it is a failure, or that it is injecting something into my body - I am avoiding it just because I don't need it right now and if I can keep not needing it that means I probably doing something right. If that time comes in my treatment when I cannot control without it I will make that change. The problem I see is the way the mediacal profession seems to wait until we have progressed beyond our current treatment program before adding something or making any changes. i want to stay ahead of the curve.

type 2 - dx 12/04
metformin 500mg 3x - avandia 2mg 2x

Post Edited (desertdiabetic) : 6/29/2006 9:19:13 PM (GMT-6)

Lex4153 · June 30, 2006, 3:39am

The thing about Byetta is this . . . it helps your pancreas make its own insulin and also slows down the digestive track so your glucose doesn't enter your blood stream all at once. I don't see how that is a bad thing to "progress" to. It's something to be used in conjunction with other type 2 oral meds that help them work better. Since Byetta slows down digestion, it also helps keep you fuller longer which results in decreased appetite and, ultimately, weight loss. Having decreased body weight makes it easier on your body to produce enough insulin and not overwork itself.

If you can control your diabetes with just diet and exercise I think that is wonderful. But even with the meds I'm on, I'm still ranging higher than normal so I don't think that's an option for me. I'm just happy (and confused) that my beta cells are still there and working after so many years of neglecting and abusing my body. It's wondrous to me that I haven't advanced to where the ONLY thing that would help at all would be insulin shots.

desertdiabetic · June 30, 2006, 4:39am

I get good control with meds - don't need to lose any weight - a couple pounds maybe - not enough to warrent Byetta for that reason. I like the appetite suppression part. What I have heard that I like best about Byetta is that it actually show some signs of slowing your beta cell burnout. I would take small doses of insulin to help prevent beta cell burnout, but that is too progressive for my doctor (PA actually). My problem is not control of glucose levels - not really - it is more the control of my hands. I have said before that I need to chain my hands to my waist. Well, my brain remembers bobbing for apples when a kid. You just can't win against a brain that is determined to eat....

I am a Bernstein fan - he likes Byetta, only the 5mg pin though. I can see his point - keep your intake down and you need less of Byetta or insulin. Like I said - for now i am just watching and learning about Byetta. I will do whatever works to keep my beta cells alive and producing.

type 2 - dx 12/04
metformin 500mg 3x - avandia 2mg 2x

Jeannie143 · June 30, 2006, 2:50pm

Lex,
Dont' worry about the past, just work on your numbers today. You may need to get to a nutrition class, hopefully with a friend or significant other along to help you remember everything. I suspect that some of your problem with your numbers comes from not having full knowledge of what your foods are doing to affect them.

Try adding a whole lot more fiber, even if it's in the form of psyllium in a glass of water after each meal. This helps avoid the spikes and lows and gives you a more level profile. Adding some regular exercise to the mix should help the numbers as well. And starting a journal of food intake, meds taken, exercise and sugar readings should give you and your doctor something to work from so you can plan better for the future.

Try to let go of your frustration and be pro-active against this disease. Most doctors can help us monitor and dispense drugs but treatment and healthcare in the case of diabetes is essentially each patient's resposibility. The sooner you get to that understanding, the better you will be able to cope, and the more information you can present to your doctor the easier it will be for him/her to juggle your meds.

You have the tools to help yourself, you just need to know how to use them. I'm sorry that this was goofed up when you were younger, but if it helps any, diabetes education has come a long way in the last 10 years. I had my first classes about 10 years ago and when I went for a refresher course last year a lot had changed. You have a chance to make a positive change and just keep plugging along at this. And you have some new friends here who wish you all the best in your steps to better control.

Take care.

~ Jeannie

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."

- Elizabeth Kubler-Ross

fktk · July 3, 2006, 1:52am

i had a pancriatitis attack nearly died. got bad cramps couldnt stand my pants on hubby called 911 when ambulance came they carried me to stretcher my poop started coming out. in ambulance it was all coming out wouldnt stop about 7 lbs of it my thoughts where death dying mocklers(funeral home)take my blood then went unconcious. at hospital nurse giving me iv hurt me so bad but thats what saved me from dying. my fingernails where all blue ,hand white sunken in.but i lived to tell about it.so what i say to all diabetics.please for your health do not eat sugar. it damages the pancrease.when it fails your gone.now i cant have caffein fats or alcohol.all damage pancriase.pancrease takes care of the fats so if not working well cant handle fats.

Hits · July 4, 2006, 10:20pm

Hi,

I previusly posted on this on the Diabeticine thread and found another member Fergus C with a similiar experience of incorrect diagnosis. Many within the medical profession just can't accept that nature does not always follow their textbook theories. I convinced that throughout the years there have a significant number of people that have been mis-diagnosed and unfortunately "mis-treated" as type1 instead of type 2. But looking on the bright side there are medics out there that try and challenge convention and look at all possibilities.

Hits

I guess that my body was always able to produce some insulin. There is current research in to this phenomenon called monognic diabetes. Have alook at this link if you have not come across this before http://www.diabetesdaily.com/content/2005/11/30/there-is-a-third-type-of-diabetes-and-its-treatable.php. Fergusc, whilst I would never condone confrontational behavioiur in any shape, I do think just judging by both our experiences people need to challenge conventiolnal thinking particularly on diabetic diets. My current challenge is with my MD who says a cholestrol reading of 3 is too high 'cos I am diabetic and this is the current thinking. He Wants me to start taking Lipitor!!

Hits

fergusc said...

I'm fascinated by your story. It struck me that your early (false!) diagnosis may have worked in your favour though. Perhaps your early insulin regime has preserved some pancreatic beta cell function which has allowed you to return to a Type 2 regime in later life. Lucky you!

You're spot-on about the dangers of potatoes too. In fact all starchy carbohydrate foods will quickly convert to glucose and require large doses of insulin to bring your blood sugar under control. You can add bread, rice and pasta to your list of foods to be very wary of.

Personally, I was diagnosed Type 1 at the age of 18, 24 years ago. The dietary advice then, as now, was to base my diet around starchy carbs. The result of course was a need for high insulin doses and over the years, weight gain and slowly deteriorating glycated haemoglobin and blood lipid profiles. On reflection it now seems that the dietary advice was and still is seriously misguided.

Around 4 years ago I decided to cut starchy carbs - as far as possble - from my diet. The result has been a reduction in my insulin requirement to about 25% of my former needs, normalised blood sugars (averaging 4-5mmol/l), 4 stone of weight loss to a BMI of 22 and blood lipids of an Olympic athlete!

Sounds to me that you are discovering something similar?

Hits said...

Hi Everyone,

I came across this forum a few weeks back and I am really interested in trying any alternative treatments and I am so grateful to people for sharing their experiences of this or any other product good or bad.really want t peopl;.

I am a male of indian origin from the UK and was diagnosed as a type 1 diabetic in 1975 at the age of 15 as I was underweight and always tired. I was started on insulin injections and at first my sugar levels went down and wieght increased. However after a while, I found that the insulin was doing nothing for me, in fact it gave me extremes of very low blood sugars of down to 1/mmol when it was most effecive and very high blood sugars of up to 19/mmol when it's effects were wearing off.

In 1989 after 14 years of injections, I went to see a new diabetes consultant at my local hospital and explained my problem and that the insulin was doing nothing for me. After the customary "up the dosage try different insulins, I managed to convince the consultant that I should try tabletes as I suspected that I had never been a type 1 but conventional wisdom was that childhood onset diabetes must always be type 1. I as then prescribed 2.5mg Glibenclamide twice a day and came off insulin, after the first week my blood sugars stabelised i.e no very Low lows or High Highs. over the years the dosage went up to 5mg twice daily, until in 2004 when I had a double frozen shoulder and the blood sugars were going up to 14/mmol, I was again advised to go on insulin, but resisted and after persistance on my part was prescribed 160mg Gliclazide twice daily. However, with a better diatery regime, (my blood sugars seem to spikee abnormally if I eat normal portions of potato products - so I have cut these to very small portions in my diet). I have reduced my medication to 80mg gliclazide twice a day with HCa at 6.8 ( soory I use uk mmol).

Upon reflection, I realised that as a child, I just lived on potato products like crisps (chips) frys and roast potatoes and jacket potatoes. But it took me till 2004 to realise that this was one of the major causes of elevated sugar levels for me. I guess the point I am trying to make is everyone ' diabetes is unique and if diabeticine or other products don't work for you - change your diet. I only found out about the the GI index after I discovered my problem with potatoes and I now realise that white flour products are also resposible for spikes ( but not as bad as potatoes for me). I see new consultants and new doctors who still can't believe that I went from "type 1" to "type 2" till they read my medical file and I then have to tell them that I was never a "type1" and ask them if I should sue our health service in the UK. Sorry about the long post.

Hits

Hits

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