Misdiagnosed Type 2

girl steele
By girl steele Latest Reply 2014-09-20 12:00:15 -0500
Started 2012-08-29 15:48:15 -0500

Hello DC Community! My family physician dx me with type 2 in 2010. Of course, in shock, I began to fight it full-on. I've always exercised, maintained my weight & eaten mostly a vegetarian diet so it wasn't a huge change for me. With the help of Metformin, I was able to keep my A1C below 6.5 the whole time, until recently. I posted in another discussion how my sugars suddenly shot up almost overnight…runinng in the upper 200's to lower 300's; even when eating a low carb diet. Exercising wouldn't bring it down like I was use to. I decided it was finally time to see an endocrinologist. Everyone touted how great this paticular endo was so I felt, & still feel really confident with her. After speaking with the nurse for a few they took me to the room she was in at her computer. Within 5 minutes of her looking at me & looking at my paperwork, ie… bloodwork, c-peptide results she diagnosed me as Type 1. She wanted to do a GAD & IA2 antibody blood test to confirm & sure enough I got the letter the other day saying they were both elevated confirming Type 1, not Type 2. I am now on Lantus 15 units at bedtime & Novolog for carb meals, but all I've needed is the Lantus to keep me under 160 all day. I am still eating low carb. It's been hard because I was finally starting to accept I have Type 2 diabetes & now it's almost like being diagnosed all over again. I have to get used to blending my exercise with eating because I've had a few lows already & ther aren't fun at all.
Any advice from Type 1's out there I need to know? Because I haven't been studying Type 1, I've been studying Type 2; so I feel like I have a lot to learn all over again. But, the goal is still the same right? To keep my blood sugar level as close to 'normal' as possible. I'm now reading a book by Dr.Bernstein called Diabetes Solution…it's been great so far & I recommend it to Type 1's & Type 2's. Like I said, exercise is a little more tricky when you're taking insulin. Also, she told me 1 unit per 15 grams of carbs so I gave myself 2 units for 34 grams of carbs & my sugar shot up to 240; so now I just don't eat very many carbs per meal. Sorry this is so long, just feel isolated because this is an isolating disease. Thinking about going to a support group just so I can talk to other Diabetics that deal with this on a daily basis. My husband, although supportive, doesn't understand the constant juggling act it can be & I'm sure he doesn't want to discuss A1C's with me. lol


23 replies

elmirerod1919
elmirerod1919 2014-09-20 12:00:15 -0500 Report

i was misdiagnosed as a 2 in 2008, they put me on metformin, never did a thing for me, glipizide worked very briefly, i was constantly asking if there was a CHANCE i may be a type 1 no way said the doctor and was he adimant. i never stuck to my diet cause it never did change my a1c when i did, when i was put on lantus it briefly went to 7.0. Here comes the best part. Last winter i read so much how starvation for three months reverses t2 diabetes, there is real proof, so i did it, it was not comfortable but i was tired of being so damned sick all the time. Imagine my horror when my a1c was 10.1. I finally was referred to an edicrinologist who i adamantly told i believed all my life i was t1 but no one would listen to me, she thought i was a 2 but said you go down to the lab right away and we'll do a c peptide test. Some people just know their bodies. she said for the time being, keep taking the metformin and the lantus and she put me on glipizide. A week later i got a call from her telling me i was right she was shocked herself i am a t1 and the metformin ruined my body and killed all kinds of beta cells.you would probably think i'd be shocked, hell no. i was RELIEVED. Finally we could get somewhere and i ALWAYS knew i was type 1 call it a 6th sense or whatever, i've known since childhood, and i was the only six year old kid that drank tab and diet pepsi. Finally someone listened to me. For years i BEGGED DOCTORS TO just consider i might be a type one, but no way. I was type 2 and that was that. I knew all along, but with no one to listen to me, what was I to do? My last a1c was so high FINALLY the doctor told me he can't do anything else for me, i'd have to see an endicrinologist. For over a week now, i once again feel like a human being. I do not feel like swooning in line at the grocery store because there was no wall to lean up against. I was very sick for six years, the lowest my a1c ever was was 7.0 and that was only temporary and when lantus was introduced. I knew i needed insulin and i knew lantus was not enough. I'd overdose myself in lantus just to keep the machine from reading HI and not having a number. Mind you, this would happen even if i'd fast. But the doctors all of them were ABSOLUTELY POSITIVE I HAD TYPE 2. No disputing was listened too, but i always knew. when she told me i had type 1 i said do you mean one and a half? she said absolutely not, you were misdiagnosed, if it were 1.5 the metformin would've helped for a little while but your records show that it made things significantly worse, and killed your pancreas from making insulin at all. You were born with this condition. I am very angry today at this, how many years were shaved off of my life when i BEGGED them to test for type 1? I never followed any diet because when i did it would be just as bad when i got my a1c back, making things even worse. The day i was diagnosed, i had the worst pain in every muscle in my body, and this is not pain i would wish on saddam hussein himself. I collapsed in the doctor's office. i hurt the muscles in my thigh so badly with every step i took. Going down stairs was more painful than going up. This REEKS of autoimmunity, so i'm really angry. Even a nurse should've pointed this out to the doctor. Anyways, i give up sweets, the pain mysteriously vanishes and would only return when i ate a LOT of candy and ice cream and stuff. Also i have the herpes simplex virus with cold sores and the most horrible autoimmune response from it a few days before a cold sore i always know i get the worst back pain you can ever imagine and not a pill in the world makes it even better, just like the muscle pain i had, NOTHING worked but not eating candy. Very curiously i thought well now that things are better and i'm doing so well (i am and you don't know how much better i feel i just want to tell the world), i thought maybe i no longer need valtrex. 3 days later i got a little tiny cold sore but very curiously no back pain at all first. Another thing that reeks of autoimmunity and this pain was well documented, it was so horrid i marched right in to the doctor's office and DEMANDED 2 grams of valtrex a day. not 500mg. I feel as this is a conspiracy telling everyone that they are 2 to treat you much more cheaply than when you absolutely need insulin. My dad is on the SAME INSULIN as me, yet he is type 2 (supposedly) and under control so no one questions it. If I had it to do over again i would not take one single metformin pill until a c-peptide test was done first. This is a matter of life and death. I was told most misdiagnosed people are found out when they are having a leg cut off in the hospital and they HAVE to run this test. Why they didn't do it before they put me on anything is something i still question to this day. If they EVER tell you that you're a type 2 diabetic DO NOT TAKE ANY MEDICINE UNTIL A C-PEPTIDE TEST IS DONE NO MATTER HOW MUCH IT MAY LOOK LIKE TYPE 2. This advice may save your life. Metformin is POISON to type 1 diabetics, and the whole disease is a whole different thing alltogether. Trust no general practitioner, even if they tell you they specialize in diabetes, demand an endicronologist and you tell them what i told you that you want a c peptide test. It is a very simple blood test. I have no idea how many beta cells i have killed, nor how much damage was done. There is no way to find out. The one thing they can agree with is my pancreas is dead. This would not be the case if i was put on insulin the day i was diagnosed. I read in some publications like the new england journal of medicine that type 1 is misdiagnosed in 30% of t2 diabetics and most are never found out, they are eventually put on intensive insulin therapy and their sugars stabalize. Honestly, i would not take metformin if i was type 2, as type 2 is fully reversible, no matter what they tell you. 600 calories a day for three months will take the fat around your pancreas away and will reverse the condition. Studies were done in england and 2 0ut of 3 who did this and went back to poor eating habits never developed diabetes again. You know, looking back, i tried cinnamon it did not do a thing, and i told the doctors. I tried starvation, only made it worse. They knew what was happening, they just wanted to treat me the cheapest way possible, they are doing this to so many others it's not funny. I no longer have pain. I know it's only been a week, but i no longer have pain. I no longer want to swoon when i have to stand up and not have something to lean on. I feel human, like myself for the first time in years and the only thing they did was tell me to flush the pills down the toilet (oh i loved doing that i so much felt like i just confessed all my sins to father), and add humalog before all meals according to what my sugars are. The bad thing about this is, you know, everyone likes to cheat once in a while, and it's harmless, but i've ruined so many beta cells, i can't afford to cheat ONCE. I don't want to die in ten years. But i knew my entire life that i had diabetes and i always knew as a little kid i'd be using needles every day like some other kids in class. I just felt it, and this is why my endicrinologist did the c-peptide test even though i manifested the signs of a type 2. She said so many times she's seen people like me who know their bodies, and no one will listen the test is harmless and the results can be shocking. Funny how i was not shocked, only relieved. Remember STAY AWAY FROM ORAL HYPOGLYCEMIC PILLS unless you have had the C-PEPTIDE test. They cannot tell what you are just from looking at you. I get up in th emorning with high blood sugar that looks like type 2 but it's not

elmirerod1919
elmirerod1919 2014-09-20 10:19:34 -0500 Report

i was misdiagnosed as a 2 in 2008, they put me on metformin, never did a thing for me, glipizide worked very briefly, i was constantly asking if there was a CHANCE i may be a type 1 no way said the doctor and was he adimant. i never stuck to my diet cause it never did change my a1c when i did, when i was put on lantus it briefly went to 7.0. Here comes the best part. Last winter i read so much how starvation for three months reverses t2 diabetes, there is real proof, so i did it, it was not comfortable but i was tired of being so damned sick all the time. Imagine my horror when my a1c was 10.1. I finally was referred to an edicrinologist who i adamantly told i believed all my life i was t1 but no one would listen to me, she thought i was a 2 but said you go down to the lab right away and we'll do a c peptide test. Some people just know their bodies. she said for the time being, keep taking the metformin and the lantus and she put me on glipizide. A week later i got a call from her telling me i was right she was shocked herself i am a t1 and the metformin ruined my body and killed all kinds of beta cells.you would probably think i'd be shocked, hell no. i was RELIEVED. Finally we could get somewhere and i ALWAYS knew i was type 1 call it a 6th sense or whatever, i've known since childhood, and i was the only six year old kid that drank tab and diet pepsi. Finally someone listened to me. For years i BEGGED DOCTORS TO just consider i might be a type one, but no way. I was type 2 and that was that. I knew all along, but with no one to listen to me, what was I to do? My last a1c was so high FINALLY the doctor told me he can't do anything else for me, i'd have to see an endicrinologist. For over a week now, i once again feel like a human being. I do not feel like swooning in line at the grocery store because there was no wall to lean up against. I was very sick for six years, the lowest my a1c ever was was 7.0 and that was only temporary and when lantus was introduced. I knew i needed insulin and i knew lantus was not enough. I'd overdose myself in lantus just to keep the machine from reading HI and not having a number. Mind you, this would happen even if i'd fast. But the doctors all of them were ABSOLUTELY POSITIVE I HAD TYPE 2. No disputing was listened too, but i always knew. when she told me i had type 1 i said do you mean one and a half? she said absolutely not, you were misdiagnosed, if it were 1.5 the metformin would've helped for a little while but your records show that it made things significantly worse, and killed your pancreas from making insulin at all. You were born with this condition. I am very angry today at this, how many years were shaved off of my life when i BEGGED them to test for type 1? I never followed any diet because when i did it would be just as bad when i got my a1c back, making things even worse. The day i was diagnosed, i had the worst pain in every muscle in my body, and this is not pain i would wish on saddam hussein himself. I collapsed in the doctor's office. i hurt the muscles in my thigh so badly with every step i took. Going down stairs was more painful than going up. This REEKS of autoimmunity, so i'm really angry. Even a nurse should've pointed this out to the doctor. Anyways, i give up sweets, the pain mysteriously vanishes and would only return when i ate a LOT of candy and ice cream and stuff. Also i have the herpes simplex virus with cold sores and the most horrible autoimmune response from it a few days before a cold sore i always know i get the worst back pain you can ever imagine and not a pill in the world makes it even better, just like the muscle pain i had, NOTHING worked but not eating candy. Very curiously i thought well now that things are better and i'm doing so well (i am and you don't know how much better i feel i just want to tell the world), i thought maybe i no longer need valtrex. 3 days later i got a little tiny cold sore but very curiously no back pain at all first. Another thing that reeks of autoimmunity and this pain was well documented, it was so horrid i marched right in to the doctor's office and DEMANDED 2 grams of valtrex a day. not 500mg. I feel as this is a conspiracy telling everyone that they are 2 to treat you much more cheaply than when you absolutely need insulin. My dad is on the SAME INSULIN as me, yet he is type 2 (supposedly) and under control so no one questions it. If I had it to do over again i would not take one single metformin pill until a c-peptide test was done first. This is a matter of life and death. I was told most misdiagnosed people are found out when they are having a leg cut off in the hospital and they HAVE to run this test. Why they didn't do it before they put me on anything is something i still question to this day. If they EVER tell you that you're a type 2 diabetic DO NOT TAKE ANY MEDICINE UNTIL A C-PEPTIDE TEST IS DONE NO MATTER HOW MUCH IT MAY LOOK LIKE TYPE 2. This advice may save your life. Metformin is POISON to type 1 diabetics, and the whole disease is a whole different thing alltogether. Trust no general practitioner, even if they tell you they specialize in diabetes, demand an endicronologist and you tell them what i told you that you want a c peptide test. It is a very simple blood test. I have no idea how many beta cells i have killed, nor how much damage was done. There is no way to find out. The one thing they can agree with is my pancreas is dead. This would not be the case if i was put on insulin the day i was diagnosed. I read in some publications like the new england journal of medicine that type 1 is misdiagnosed in 30% of t2 diabetics and most are never found out, they are eventually put on intensive insulin therapy and their sugars stabalize. Honestly, i would not take metformin if i was type 2, as type 2 is fully reversible, no matter what they tell you. 600 calories a day for three months will take the fat around your pancreas away and will reverse the condition. Studies were done in england and 2 0ut of 3 who did this and went back to poor eating habits never developed diabetes again. You know, looking back, i tried cinnamon it did not do a thing, and i told the doctors. I tried starvation, only made it worse. They knew what was happening, they just wanted to treat me the cheapest way possible, they are doing this to so many others it's not funny. I no longer have pain. I know it's only been a week, but i no longer have pain. I no longer want to swoon when i have to stand up and not have something to lean on. I feel human, like myself for the first time in years and the only thing they did was tell me to flush the pills down the toilet (oh i loved doing that i so much felt like i just confessed all my sins to father), and add humalog before all meals according to what my sugars are. The bad thing about this is, you know, everyone likes to cheat once in a while, and it's harmless, but i've ruined so many beta cells, i can't afford to cheat ONCE. I don't want to die in ten years. But i knew my entire life that i had diabetes and i always knew as a little kid i'd be using needles every day like some other kids in class. I just felt it, and this is why my endicrinologist did the c-peptide test even though i manifested the signs of a type 2. She said so many times she's seen people like me who know their bodies, and no one will listen the test is harmless and the results can be shocking. Funny how i was not shocked, only relieved. Remember STAY AWAY FROM ORAL HYPOGLYCEMIC PILLS unless you have had the C-PEPTIDE test. They cannot tell what you are just from looking at you. I get up in th emorning with high blood sugar that looks like type 2 but it's not

Pharmacist George
Pharmacist George 2012-09-14 11:13:16 -0500 Report

Hi girl Steele,

It must have been a suprise to you that you have Type 1 and not Type 2 because generally people get diagnosed with Type 1 early on in life within the first decade of life. It does not really matter much whether you have either. Your basic and most important goal remains to bring diabetes under control and avoid diabetes complications which should be the goal of everyone with diabetes.

But now you know you have Type 1 and that you are dependent on insulin to keep your blood sugar at desired levels. It is great that you are making favorbale lifestyle choices by keeping up with physcial activity and making healthy food choices. That's really great and I really congratulate you for taking this course.These lifestyle choices are at the heart of diabetes control regardless of the Type of diabetes you have.

Whether you have Type 1 or Type 2 the steps needed to keep diabetes under control and avoid complications are the same. The only difference is that the Treatment is exclusively based on short and long acting insulin. when using insulin you must monitor your blood sugar before every insulin injection in order to avoid hypoglycemia and to know how high your sugar is.

Carb counting is essential to determine your meal innsulin dose. There are many reasons why your blood sugar spikes even if you're using the right number of pre meal insulin. Make sure you're not skipping any meals and that you're consuming 3 balanced meals and 2 snacks in between as I describe in the book I authored.

The American Diabetes Associaion recommends that you consume up to 55% of your total daily calories from high fiber carbs. So it is important not to cut down carbs below this level in order to control blood sugar. Instead make sure you raise your daily fiber intake gradually to about 35 grams. This amount of fiber intake will definetely help reduce your blood sugar response afer a meal and will also help avoid a quick sugar peak. The presence of fiber in your diet creates a lower blood sugar peak and consequently may help resolve your sugar spike problem. Fiber has a ton of additional benefits that I describe in my book and is one of the essential factors of diabetes control along with physical activity.

check out my articles at "Living with Diabetes" becausse I've addressed many of the issues you're struggling with. Let me know if you have further questions.

elmirerod1919
elmirerod1919 2014-09-20 10:20:58 -0500 Report

you are as ignorant as most doctors if you believe t1 only comes out in childhood. That thinking made me repulsively sick for six years and almost killed me

T1mama
T1mama 2012-09-03 23:42:54 -0500 Report

Hello Girl :-). I was also misdiagnosed in 2010 as a Type 2 diabetic. The physician actually told me that I had to be a Type 2 because of my age (24 at the time). He didnt even test me for the insulin antibodies and put me on 10 units of lantus a day and thats it. Well I ended up in the hospital with my FIRST case of DKA (diabetic ketoacidoses sp?) a couple of weeks later and eventually, over the course of a year, i ended up on 60 units of Lantus a day plus novolog before each meal. (they still wouldnt classify me as a Type 1 because of my age). I moved back to Arizona and saw a new endo who immediately did the insulin antibody tests, which came back high, and put me on an insulin pump. Thank goodness for no more needles! I spent a lot of time surfing the internet for information on this 'new' diagnosis and there is a lot to be found online. However, you can also make a list of questions and ask your doctor or find another type 1. I have always happily shared information with other diabetics who might be new and still a little afraid. It was a big shock to go from the type 2 to type 1 because i knew that with type 2 i could control it with diet and exercise. Now its been turned into a life sentence. It was tough and im still dealing with it but being able to discuss it with other diabetics can help A LOT! Good luck to you :-)

elmirerod1919
elmirerod1919 2014-09-20 10:24:29 -0500 Report

interesting t1mama, i have to ask though, did you always feel as though you had type 1? i felt that way all my life and doctors would only laugh at me. fat adults don't get t1 is what i was told. because of this ignorant thinking i was very sick for six years with fatigue, pain and swooning, and the whole time i knew what i had but no one would listen. I was lucky never to get dka, really. GOD do i feel better now and i bet you do too. I can only imagine how good someone feels when they are correctly diagnosed and insulin therapy starts. I don't cheat at all, cannot afford to , i did too much damage. I swear God has a hand in this, i've not been tempted once so far just like when i quit smoking the day they told me i was diabetic, i did it cold turkey and never missed it, i was 3 packs a day

girl steele
girl steele 2012-09-04 18:26:26 -0500 Report

Wow T1mama…sounds like you've had somewhat of a bumpy road, sorry to hear that. It does anger me that they aren't running a simple blood test to confirm T1 or T2 sooner…I just don't get it. Does the pump keep you even keel all day/night? Right now I only need the fifteen units before bed, I hardly use the Novolog unless I know I'm going to be 'naughty'. ;) Like I mentioned earlier, I have noticed some weight gain. Did you experience weight gain with the pump?
Glad to hear you finally have it under control, sounds like the worst is behind you.

elmirerod1919
elmirerod1919 2014-09-20 10:31:49 -0500 Report

girl steele, you want to talk about being angry??????? I BEGGED and PLEADED with the doctors to please CONSIDER that i MIGHT be type 1 but no they were positive. I stormed into the endicrinologists office and very angrily told her what i felt it was and she made me happy immediately, when she NEVER laughed or doubted me and said frank go to the lab right away we will do a c-peptide test, i think you are type 2 but i've seen people like you who know their bodies, it can surprise me. she gave me glipizide, and after the tests we were gonna do victoza, but i got a call later telling me to flush the metformin and glipizide down the toilet i a MOST DEFINITELY type 1 NOT EVEN LADA or TYPE 1.5, i was born like this with a very bad pancreas that no longer makes insulin. Oh my god the feeling of relief. I cried tears of joy, really, i'm even getting choked up now, as i flushed those pills down the toilet. I was so relieved. Felt just like i do when i confess my sins to father at church. Be angry, because this is very common, and if i wasn't so mean to the doctor, a c peptide test may never have been done. most people are misdiagnosed in the hospital when they are having a leg cut off. The whole thing reeks of conspiracy to me, to treat me as cheaply as possible until it's no longer possible, as insulin will throw you into catastrophic care in three months. I hope by these posts i'm making, i can save a life, or suffering like i went through WHEN I KNEW ALL ALONG WHAT I HAD and they just wouldn't listen. If you are ever diagnosed NEVER TAKE A THING UNTIL THEY FIRST DO A C PEPTIDE TEST DEMAND ONE if it comes to you refusing medical care they will do one to shut you up it's only a blood test you might be very surprised, i should have but i was not. not one bit

T1mama
T1mama 2012-09-04 22:36:15 -0500 Report

Yeah, it's been pretty rough but its getting a lot easier. The pump, so far, has kept my sugars very regulated with very little highs or lows. My A1C has gone down to 6.5 from 8 recently. I have definitely noticed weight gain on my end but I also have hypothyroidism (hashimoto's) so that may contribute to it too. I do notice that, now that I am on insulin, I am having a lot of difficulty losing the weight gain from having my kids (ages 3 years and a 7 month old ). Hopefully they will come out with a magical weight loss pill next to help me with that lol

elmirerod1919
elmirerod1919 2014-09-20 10:44:31 -0500 Report

diet pills are the worst thing you can do. I took phentermine for years, and every time i went off i gained triple what i lost. If you are healthy, who cares how fat you are? chances are, most people are fatter than you, america is a nation with a sixty percent obesity rate. i'm 5 8 and 195 and i could care less. Most are fatter than me. The last time i came off diet pills i tapered off so slowly till i had one left and never took another one

girl steele
girl steele 2012-09-03 21:49:38 -0500 Report

Hi Set apart. Wow, we do have a lot in common don't we? I haven't asked what my antibody numbers were but will. Usually I get printed copies of all my blood work. Were you on meds for the 'type 2"? Are you able to control with just the Lantus? I love how it keeps me even keel most of the time, unless I slip up, which I do at times. I'm doing the 15 units in 1 dose, but if I go over that I will break it down. I think Dr Bernstein recommends breaking up anything over 7 units, but I always forget. It's a lot to get used to, but it's not so bad. Although I have noticed some weight gain since starting the insulin, which I'm trying to figure out how to ward it off. Thanks for sharing your story with me. Oh, how far along are you in the book? I'm on Chapter 10.

elmirerod1919
elmirerod1919 2014-09-20 10:41:59 -0500 Report

this is hard to describe, but i knew what i had and i was no longer trusting doctors. I overdosed on lantus many times that would throw me into insulin shock, as that's all i had. 100 units at times just to make the machine have a number and not say HI. If they were still available, i'd have fired every doctor and treated myself with slow and fast acting over the counter beef or pork insulin. They are no longer available and now you need a prescription for all insulin. But the lantus was too slow acting and i needed too much but what i did (everry day i'd almost swoon when i'd be like at 41) was just keep giving it to myself unitl i saw numbers and not HI. The first time i was in insulin shock i did not know what was going on, if i did i'd had bought a pepsi, i was at a supermarket when suddenly i got double vision. I DROVE HOME THIS WAY covering one eye up. whenever i got low blood sugar id have a pepsi and it would raise it but i hate sugar sodas they make you feel like your teeth are rotting away i drank tab and diet pepsi since i was very little I AM SERIOUS WHEN I SAY I KNEW FROM THE BEGINNING I WAS A T1 DIABETIC. What other six year old kid ONLY drinks diet? To this day tab is my favourite cause they still use saccharin, what i lived on as a kid. Wierd that i always knew, wasn't it? It was never diagnosed in the 90s but if you asked me under a lie detector test if i was type 1 diabetic i'd have said yes and passed that test with flying colours, that's how positive i was. I don't claim a 6th sense, i have no idea how i knew. I just did, and when i told doctors they told me more or less i have too many daydreams. And this was not just one doctor

Set apart
Set apart 2012-09-03 06:24:52 -0500 Report

Hi there Girl, well I gotta say you and I have so much in common! I was misdiagnosed in the emergency as a T2, yet within a few weeks and a Dr. Seeing me also said the same thing, "you don't meet the criteria for T2, with peptide test she also determined I was T1! My antibodies test were extremely high at 432.0 was told non-diabetics are at 0.02!!!!! It's been a rough year, but this place has been my best friend! I am also reading the book by Dr. Bernstein, and I've learned so much! I am still debating giving up fruit!!!!!! I am on 23 units of Lantus which I break up into 2 injections! Good luck!

elmirerod1919
elmirerod1919 2014-09-20 11:20:27 -0500 Report

when i was diagnosed every muscle in my body was in pain every step i took was excruciating, i felt like i was slowly dying. i had to lift my pantleg just to get the clutch up i had no strength in my legs, but no circulation problem. Today we know that was an autoimmune response, and so were the miserable backaches before the cold sore breakouts. I thought maybe now i can stop valtrex, 2 grams a day does my kidneys no good, but got a cold sore, but no pain first, funny, i'm being treated as a t1 and no pain. I have not swooned one time, nor have i involuntarily puked. GOD DO I FEEL BETTER

roxygyrl1970
roxygyrl1970 2012-09-02 22:54:11 -0500 Report

P.S. Again because this is important NEVER forget your equivalent to my Starburst. You never know when you might need it for your lows. Especially when your driving or in a hurry or having to wait on something and can't leave to get some sugar.

roxygyrl1970
roxygyrl1970 2012-09-02 22:49:47 -0500 Report

I was misdiagnosed the first day as a Type 2 because the doctor was old and thought because of my age (even though I weigh about 103lbs.) that I was a Type 2 gave me a shot of insulin because my BS was over 600. He sent me home with pills and had me come back the next day. When I went back the next day my BS had shot right back up and I had NO carbs because I was still shell shocked from the diagnosis the day before. Luckily there was a young doc there, because he was the one who said I was a Type 1 and I heard him and the old doc in the hallway arguing over which type of diabetes I have. There is one good thing about Type 1 diabetes. As long as it's in moderation and as long as you take your insulin, you can eat whatever you want. YOU HAVE TO HAVE YOUR CARBS!!!! When I was first diagnosed my first response was to go on the Atkins Diet because its a no carb diet and I didn't want to do it to loose weight, I wanted to do it because it was no carbs and I fiqured no carbs would help my diabetes. My Endocrinologist said absolutely no way.
1. Even though your a diabetic your body needs carbs
2. Staying on the Adkins/NO CARB diet for an extended amount of time is not good for ANYONE. Those diets by themselves can cause health problems to ANYONE if they stay on them for long periods of time.
I'm on the insulin pump and still have issues with my BS(it's become extremely worse since they removed my gallbladder and my body doesn't seem to be able to process any food properly, which have caused me to have more health problems), but it's still better than when I'm on shots. When I'm on shots my BS almost never is below 300 even when I'm taking A LOT of insulin just not getting it every hour like the pump gives me. Plus I saw you gave yourself 2 units for 34 carbs. The pump allows you to get a more precise amount of insulin than you can give yourself through injections. It will also take a little bit of time to see how your body reacts with insulin and if you need to lower or raise the units of insulin you take to the amount of carbs that you eat.

**ALWAYS CARRY THE GLUCOSE TABS/GEL OR SOME SORT OF CANDY WITH YOU EVERYWHERE!!! Even though it seems I want salty foods when my BS drops, I totally love Starburst candy and can eat them anytime. Find one that work's for you.

I'm surprised that they have you take your Lantus at night. I've had issues with my BS dropping in the middle of the night and have had to have the ambulance called three times because of it. I have to make sure my sugars are a little bit high, 160 before I go to sleep so that it won't drop too low. Before they removed my gallbladder, when I woke up my BS would be in the 90's when I went to bed and it was 160. I had finally gotten that working and then they had to remove my gallbladder and it's like I'm going back to square 1. It's frustrating but it has to be done, so I'll do it.

One of my biggest issues that raise my BS is stress. It will raise my BS just like a Coke would. Originally I would become so obsessed with trying to keep my BS within certain numbers I ended up causing my BS to shoot up even with no carbs. So my endocrinologist told me how to do a correction bolus (which mine is 1 unit of insulin for ever 50 it is over 100.—So if my BS was 300, I would give myself 4 Units of Insulin).

Try to discuss it with your husband at the very least and explain what BS and how much insulin you have to take for every carb you eat and explain what A1C's are. Try to keep him in the loop with the "KISS" (Keep It Simple Stupid) method so he doesn't get overwhelmed and he might just surprise you. He's probably very worried for you, confused and feeling helpless on how he can help you. I have come to expect that most people who don't have to deal with Diabetes (especially Type 1) will act as if you have a death sentence hanging over your head and when he tells anyone you have diabetes, He's PROBABLY getting the same reaction and may not be telling you about it. When you learn something new, try to let him know, but just give it with a "KISS"

Keep your head up, you'll get through it. Cry when you need to, Laugh as much as you can and Rage on a Page when you need to. It's always a learning curve but just keep it as much of a "KISS" as you can. There are going to be all types of people giving you advice and I've found alot of it wouldn't work for me when I discussed it with my endo. Learn to listen with a half closed ear or you just might strangle someone. It's going to be OK & YOU CAN & WILL DO THIS!!!!

Later, Melissa

elmirerod1919
elmirerod1919 2014-09-20 10:55:05 -0500 Report

oh melissa, reminds me so much of the way i was brainwashed as a 2, I wanted so badly for them to staple my stomach like oprah had twice, i heard that cured every case of 2 there was but the most i could get to was 217 and i had to be 235 with a co morbidity. No matter what i ate i could not gain, didn't lose, but didn't gain one pound, never mind a half gallon of ice cream a day a pound of bacon for breakfast. I am so glad now i never had it done. It would've never done a thing for my diabetes. I was type 1 all along, but gave up on telling doctors i thought that, as they only laughed at me. Today as good as i feel, even though it's been only a week, my advice is if you are diagnosed with diabetes don't take ANY medicine until a c peptide test is done. I was angry and in tears telling the endocrinologist i knew EXACTLY the problem. she didn't believe me but made me so happy when she said frank you go right down to the lab and take this test we'll find out whether you're a one or two. a week later i got a call to flush all my metformin and glipizide, and to use humalog along with the lantus. She said as unbelievably strange as it was, being adult and overweight, i was BORN with type 1 not 1.5, and NEVER had 2, and metformin NEVER worked, just like i told her, in fact it killed beta cells. When you feel something about your body, never trust the doctors, you know your body, i sure knew mine. Oh, when i think of how f'ing sick i always was, puking without warning, swooning, the double vision, the PAIN (which was autoimmune a clue right there i was t1 and when i read that i was CONVINCED 5 years ago i was right), i am so angry at the stupid doctors who could've just done a damned c peptide test right away and found out. No fat adult can get t1 i was told every time. It was impossible. They had me believing it to the point that i had myself on a clinical trial list in boston to get my stomach stapled at a bmi of only 30 to cure t2 diabetes. I would've been sicker than ever and so disappointed if i ever did this. See a specialist and ask for the tests i mentioned. Diabetes is nothing to play with

girl steele
girl steele 2012-09-06 08:54:45 -0500 Report

Thanks so much Melissa for the wonderful reply. It really helps to get advice/suggestions from others going thru this. I appreciate this & DCC has helped very much. Well wishes to you as well.
-Trish

AF Retired 462
AF Retired 462 2012-08-29 20:44:28 -0500 Report

What would be do with out someone in our life supporting us. It might be a spouse or significant other; a family member or good friend. Glad your hubby is supportive. My wife stays on me about my diet and it helps.

Nick1962
Nick1962 2012-08-29 19:58:28 -0500 Report

I guess I'm a little angry you had to find out this way, but you seem to be good with it. That says a lot about how you'll handle it going forward. I think too you have a lucky husband. He knows you're actually taking charge of it to make sure you're around and not letting it get the best of you like so many would. I can't speak for him, but that sends me a clear message. Thanks for being an inspiration.

elmirerod1919
elmirerod1919 2014-09-20 11:15:52 -0500 Report

a little???? come on nick, they could have KILLED her and me as well. The doctors are ignorant pigs who conspire to call all diabetics newly diagnosed (pills will work temporarily on a t1 but will extensively damage the pancreas, but are like 200 times cheaper)type 2. The more i read, the more it reeks of a conspiracy. Insulin is so expensive it will throw you into catastrophic care in three months. I wish i could go on tv and tell the world what happened to me, my goal is to SAVE ONE LIFE OF A NEWLY DIAGNOSED DIABETIC and make it so they never had to go thru the HELL i went thru. I puked with no warning, I swooned at times. It was hot even in maine in december walking outside i had to take off my jacket many times, i was in MISERABLE pain, always sick, if i had to do it over again i'd have demanded a c peptide test and an endicrinologist. I refuse to even let my gp prescribe insulin. I don't trust the family doctor any more. Too many times i was laughed at when i just suggested they might look into me being a type 1. I'll go to him for physical exams, but there's no f'ing way he will do a thing for my diabetes i will not let it happen. If the endocrinologist says i cannot see her any longer, i will go right off insulin. She is like an angel as far as i'm concerned, and i feel so bad that i was so mean to her at first trust me i HAD IT with being sick and i knew all along why. But she never told me i was daydreaming in fact she said to go to the lab right away. A week later she calls and tells me i'm type 1, not 1 1/2 and that metformin has ruined my pancreas. they are two VERY DIFFERENT diseases. Oh i was not shocked, but relieved. Finally. Since then i average 80 for blood sugar, not 4 something anymore, those days are GONE. Also gone is any type of cheating, i did so much damage to my body i can't afford to cheat once, i'd be petrified to have a piece of candy to tell you the truth. Wouldn't have a piece of cake any more than i'd eat arsenic. The same thing happened to mary tyler moore at 33 and she kept VERY tight control of her blood sugar, and amazingly she is still around, although she looks a good 30 years older than what she is, diabetes will do that to you. Please people. See an endicrinologist. You are playing with your life. What shocks me the most is to see how common this is. My whole case reeked of autoimmunity, especially the pain a nurse should've noticed that. I believe they treat you as cheaply as possible. First it was diet controlled, believe me i had so much pain this was not a problem. I gave up sugar the pain went away. Then along came metformin, which never changed anything. Then with the metformin because they said once again i was wrong and metformin WAS helping (it never did a thing, not once)came glipizide, and that worked for a little while but stopped, they wanted to put me on actos and because of the bladder cancer (creepy as much as i knew i was t1diabetic i also felt and still feel i'll have bladder cancer one day) that's where i drew the line and he put me on lantus which initially helped, but i had to go up and up. Still, it was all my fault for eating wrong i was told. And i did not stick to a diet, cause it made no difference and if i was gonna die i'm gonna die happy, i felt this would kill me soon. I even lived on 600 calories the winter of 2013, and imagine the horror as he told me my a1c was 10.1. if i was type 2, it would've been reversed by now. i could not get anywhere with them i just started self treating with massive doses of lantus, which, of course, had me in insulin shock almost daily. Don't take type 2 for an answer, make them PROVE it. Also, i NEVER had prediabetes, my a1c was very high when i was in the most severe pain in my life is how they found out. No further tests, which is why if i knew then what i do now, i would not let him touch me, i'd go only to a specialist

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