Hi, Melitta: I'm Keith and have been a T1 since Dec 1965; I'm 60. My wife and I have a 31 Y/O son who was diagnosed incorrectly when he was 27. He was diagnosed with T2 although he has a parent w/T1 (me) and is very thin. He struggled with Metformin for nearly 2 years before his endo finally thought he was a T1 after she'd received hisc-peptide results. He's now on a pump and doing better. My endo (who was in the same practice as my son's endo) thought he was a T1 when I described Stephen's symptoms to him. I told my son he should change endo's but he liked his endo and didn't want to change. Now that he's correctly diagnosed I'm hoping his endo will be able to him manage his D.
Hi Keith: I am glad that your son is finally correctly diagnosed, but how horrible that he had to go for two years receiving improper treatment. Doctors are supposed to follow evidence-based medicine; if a person is young (27), has a parent with T1D, is thin, etc., simply follow the evidence. Things are actually getting better, but this crazy notion that T1D is a childhood disease really hurts those of us who are diagnosed/misdiagnosed as adults.
I was diagnosed as a type 2 when I was 30. Honestly I did diet and exercise, had a low A1c and didnât think about it hardly at all. Didnât even check my blood sugar. My endo was concerned about my weight and put me on bictoza. I lost a bunch of weight. Then 3 years later I gain a bunch of weight suddenly and started having hot flashes, headaches and urinating constantly. I couldnât sleep more than an hour at night. I got so sick and I took my blood sugars and I was in the 400s. I didnât have insurance due to a job change and I had a pre-existing condition penalty that wouldnât cover me until June 1st (it was May 27). I called the endo again and pleaded with the nurse on what she would do. They kept saying I had high blood sugar because I was eating too many carbs. After 4 days of this, she finally said, if it were me I would go to the hospital. I didnât know what the hospital would cost so I went to a walk in clinic and they gave me insulin. I had blood in my urine and high ketones. I started to feel better on the insulin. I finally went back to the endo and she says I guess you need to be on insulin now. I asked her to run the LADA test, she told me I didnât need it. I told her my brother was a type 1. They ran the test and I came back positive. She then tells me that because Iâm over weight she thought I was a type 2.
I then got sent to the meanest, thinnest, unhappy dietitian. I finally got a family doctor that specialized in diabetes education that did one on one sessions with me.
My son (23) has just recovered from very severe DKA.(5th of August) He had undiagnosed type 1 diabetes. He was working in a remote camp and had attended the medics for 5 days on 6 occasions with sore throat, chest on fire, throwing up, dizzy could hardly walk and they cleared him to work for the next day. He went back to his room for the night and sometime during the night collapsed on his bathroom floor. He was not found until the next morning about 10.30 am. He was found by an ex army medic who said the only way he knew he was still alive was by the wheeze noise he was making. He was airlifted to a major city ICU unit. He had no recordable blood pressure, his body temp was 28 degrees and his blood sugar were high. His ketones were 7.4 the highest the ICU doctors had ever seen. He spent 8 days in ICU with a breathing tube, 8 to 9 iv lines through a central line. His eye lids, face, arms and hands were all very swollen from the fluids. On the 4th day he seemed to be getting worse, he had developed pneumonia and his platelets were low so he was given a transfusion. They also turned back the sedation so they could do some neurological test to which he did not respond well. Things were looking bad. The next day they changed to a different sedation medication (one they do not usually use in ICU) and he woke up and was a lot more with it. He could answer with nods and shaking of his head to questions. It was looking a lot more positive. The next day they removed the breathing tube and he was able to speak a little. The 2 days later they moved him to a ward. He suffered some withdrawal to the earlier sedation drugs and could not eat with out throwing up, but this slowly subsided. He was able to go for short walks, He had lost 11 kg in about 15 days and he had lost a lot of muscle. He had already lost 10 kg in the months before hand as he said he was not eating much because the camp food was terrible, he was also drinking about 3 litres of water a day, but this was dismissed as it was hot where he worked ) He is a very lucky young man to have survived this and to not have an brain damage or organ damage(as far as we know).The ICU doctors are still concerned because he had air pockets in the chest, so we need to keep a check on his chest and if he gets sick to go straight to the hospital... At this stage we are wanting this to never ever happen to another person. If his supervisor had not phoned to ask someone to check on him if he had not shown up for work, he would not have been found until much later and he would not be here today. In my sons case they were treating him for a virus (URTI) and even gave him steroids which would have made his blood sugars worse......
Medical Records
Day 1. saw the paramedics - they did not even look at him gave him Panadol and strepsils for a very sore throat.
Day 2. saw the paramedic - presented with headache, myalgia, sore throat, non productive cough - DX URTI given salt water gargle, strepsils, paracetamol.
Day 3. saw the doctor - patient says feeling mildly better, but still has headache, sore throat, coughing but not productive, patient is .......... can not read, nose, sinus, glands and throat all NAD chest clear. Pulse 82
Assessment - improving Upper Resp Tract Infection. Given strepsils, psu? paracetamol.(Doctor)
Day 4. Miserable night coughing and chest pain. No SOB not productive, Temp 36.5 deg, (hard to read looks like - cook so wet)throat inflamed, no pus, no nodes, chest clear, no wheeze. Viral URTI - Paracetamol (or something similar as hard to read) (Doctor)
Day 5. morning visit - Coughing all night and vomiting (he told me looked like blood not sure if he told the doctor that)No diarrhea, something I can't read looks like 5/5 temp 35.2, hyperventilating, no audible wheeze, chest clear, no wheeze. Treated as post URTI asthma - given Predizone 25bu 5% see at 5 pm
Day 5 second visit 5pm - Concerned not sleeping during day, hyperventilating during consult, (he told doctor he was dizzy and could hardly walk, but this is not in the notes) Temp 34.5, chest is clear, d/w supervisor (driven to appointment by supervisor) cleared for work given Phenergan 25 7 nocte Resolving URTI
Next morning at 10.30 found on the bathroom floor, Careflight and medics called, un-recordable BP, no readable pulse, cerhd felt, unconscious, ACS 10, responded to pain, blood sugar H more than 30. Temp 28 degC. other that I can not read.....Ventilated by Careflight and transported to ICU
Notes from hospital admission - GCS7 with high BSL. Severe hypothermic to 28 deg
C, severe metabolic acidosis, Garde II intubation by Careflight retrieval.
Principal Diagnosis
DKA, T1DM - Newly diagnosis, acute kidney injury, sinusitis.
We have questioned the medics on site at my sons work as he attended 6 times and they did not diagnose him correctly. They have apologised and say that it was an unusual case. I also mentioned this to my chemist and they said the same. But from what I have read lately more than half T1D is in young adult.. Is this correct and why do the doctors not know to check young adults for diabetes when they present with flu like symptoms? The ICU doctors are still a little concerned about my son as he had some air pockets in his chest and they want his GP to be aware and if he gets sick he needs to go to hospital immediately.
Prior to this my son had lost about 10kg over 2 months (most of it in the last month before) My son worked away for 3 weeks and was home for one week (not living at home though) The last time I saw him I mentioned his weight loss and he said the food at camp was terrible so he was hardly eating.... He worked in a hot, dry and dusty environment, so he drank a lot of water for that reason so this was not picked up and he only had to get up once during the night to use the bathroom. So none of the signs were picked up.
I would like more people to know the signs especially young adults that have moved out of home as they do not know the signs and they have no idea about diseases such as diabetes. There needs to be more awareness that young adults get T1D as well as children... and more awareness of the symptoms, a tv advert would be great... There is a great facebook page ' get diabetes right' which we all need to share....
My son is dealing with this very well, his sugar is up and down a bit, he is having regular visits to the dietician, educator and Endocrynologist..... and his GP, so hopefully it will all level out soon.... He is still trying to get his strength back (he last another 11kg when he was sick and then in ICU), exercise is throwing out his sugar levels a bit, so will take a bit to sort out. Hopefully he will be allowed to drive again soon, so he can find a new job.... Do you think the doctor should have diagnosed Diabetes from the symptoms he presented with?
The problem is there are people like me who have such mild symptoms at diagnosis, they're almost asymptomatic. This seems to make doctors think type 2 or not diabetic at all? Because apparently a lot more type 2's are asymptomatic at diagnosis ? (I'm not sure on this because the type 2's I know weren't , but I've read it in a lot of places) . I'm very clearly not a type 2 though and I'M SO GLAD I didn't end up in a situation like your son's, but glad your son got help. It sounds like he was on death's doorstep and he's my age (I was diagnosed last year at 22 years old, 23 now...going on 24). I'm glad also in your situation the doctors did their job and investigated him for type 1 . I think a competent hospital WOULD test for these things though. I think if someone presents with flu but normal methods aren't working they should be tested for all sorts of diseases including diabetes and then autoantibody testing to determine if it's type 1 or 2 .
I was diagnosed mid a severe gallbladder attack (I just found out that's what it was this year though when I had a much more severe even gallbladder attack and bile stones in my common bile duct which was blocking off my liver and pancreas, you can read about my gallbladder hell if you want I've posted about it) last year at a hospital that was less than competent . They were admittedly scared to put me on insulin and didn't type me, a crappy internal meds doctor diagnosed me as type 2 without any testing. I had no testing of any sort until I got to my endocrinologist and he right away was like you're a type 1, no questioning it. My endocrinologist was diagnosed at 22 years old himself where he knew how it was and he's been helpful on that. The thing is , if someone is a normal weight and losing weight and not having even a mild change by metformin, then they are PROBABLY not a type 2. i went a few months improperly being treated as a type 2 and I always worry if it damaged me , as I was constantly in the 200's and 300's no matter what I did rarely lower than 200 unless I completely starved myself. So there's stories like your son's and then there's ones like mine where it's NOT IMMEDIATELY clear what's going on, and I went misdiagnosed for a while. Now that I've been treated for a while I'm healthy.
I have hope for you that your son will be healthy when he sorts himself out, though I can't promise weight gain as I have a problem where I can't gain weight no matter what I do and I have no allergies or anything that would cause absorption issues/malnutrition , and my blood sugar is controlled very well (My a1c has been under 6% for almost a year now) . I lost 6 lbs after my surgery last month, and that was already after losing 6 lbs due to various things over the past year. I think I've gained back 2 but it's a pain to keep those 2 lbs on :( lol. I am only around 122 lbs and 5'5" now I'm not a very big girl at all.
Hi JT: Way more than half (probably 75% or more) of new-onset Type 1 diabetes is seen in adults, many of them young adults, and there is a lack of recognition that Type 1 diabetes is not and never has been a childhood disease. Tragically, as you have found out, MANY MANY are misdiagnosed even if they have acute symptoms. In your son's case, he was not misdiagnosed with Type 2, but instead the extreme symptoms of new-onset Type 1 diabetes were missed. Again, very sadly, not unusual. He is lucky to have you as such a caring parent.
Thank you Melitta, we are very lucky to still have him.... We are trying to get his story out there, so that there is more awarness in this age group about this disease.....
There is a great facebook page that we all need to share trying to raise awarness
https://www.facebook.com/GetDiabetesRight
Since a fingerstick meter and strips are SO inexpensive, I think they should be as much a part of any checkup as temperature, blood pressure, and heart rate. Nowadays, many doctors are routinely checking oxygen as well. Well, it's just as easy to check blood sugar as to check oxygen.
I had a coma (not diagnosis, but later), and almost died because the ENDO I went to 5 days before I went unconscious, and who DID have grossly lab results staring him in the face, did absolutely nothing -- just sent me home, I guess because I didn't SEEM so ill, and my diagnosis was supposed to be T2, and everyone knows T2s who aren't severely ill with something else don't go into coma. The only reason I survived is because my friends came to check up on me after I didn't show up at a picnic, and they knew I'd been acting kind of funny. Last I remember, they were shouting my name outside my door, and I was trying to put on a slipper. Next I know, I woke up in the hospital thinking I was in Canada (I live in Reno). Later found out that the CDE fought with the hospitalist to put me on T1 protocols, because T2 protocols weren't working.
As far as being unable to read, I experienced that, too. It was because I really couldn't concentrate on anything, and that ability came back slowly. Just now, I'm recovering from a mystery illness, and had a period where I couldn't read or concentrate, again. Brains don't take well to being fried.
Anyway, best of luck to your son, and dive into all the education available, because unfortunately and as you know, not all medical personnel can be depended on.
Thanks for sharing, JT, that is an excellent Facebook page. I was not previously aware of it, glad to know it's out there!
My Son's HbA1c was 18.9 on the day after the DKA.....
I was (fairly recently) diagnosed type 1 at age 28. I had bloodwork done by my ob/gyn because of infertility and constant yeast infections. My fasting BS came back at around 300. She called and said I had type 2 diabetes and to see an endocrinologist. I saw an endocrinologist the next week, who said it may be type 1 and may be type 2. The plan was to take metformin and I was given a meter. That day i ate a salad and grilled chicken for lunch and tested my BS for the first time not fasting... it was 700. I called the endo and was told to come back to the office where I was put on insulin. Blood work came back, - for antibodies but a very low c-peptide. He then DX me with type 1.
ETA - a1c was 13.4 at DXWelcome to the whacky world of diabetes. You were lucky to receive the correct diagnoses in a timely manner. Took 8 years and an endocrinologist before I was given the correct diagnoses as a type 1. But, what always frustrated me while I was being treated as a type 2. I could eat a grilled chicken salad and my bloods sugars would run very high later on in the day. Then weeks later, I could eat a hamburger and my my blood sugars would go way down. I've had a few hypos after eating a good ole hamburger. I conveyed my frustration with one of my doctors. Doctor stated that my diabetes was very brittle. None of my previous doctors or the hospital that I was first admitted to never checked to see if I was actually a type 1. Because of my age at that time, 42, it was assumed that I was a T2. The year before I was diagnosed, I had a physical that showed no signs of diabetes or pre-diabetes.
Hi Amy: I always feel funny welcoming people to the club, but welcome! I am glad that you very quickly got the correct diagnosis of Type 1 diabetes. It is crazy that a doctor would just say you have Type 2 based on a BG of 300 mg/dl, without bothering to do any testing! Bad and dangerous to make assumptions. Anyhow, glad you are here and hope you are adjusting okay--it really is a shock at first, I think.
That doesn't surprise me at all when I was dx'd with type 2 despite my 249 mg/dL reading being a near fasting level.
Two months ago I was hospitalized, and was told I had Type 2 . For 4-6 weeks before my follow up appointment with an endocrinologist I took my insulin injections as instructed, cleaned up my diet (became a sloppy vegetarian for a period of time), brought down my glucose levels substantially and gained back 5 pounds (I am thin) all with the goal of getting off insulin. My Dr. reviewed the hospital record and saw that the proper tests had not been done, and there was no evidence for diagnosing me with T2. She ordered the labs, and they came back that I am T1a. Although no harm was done to me, it is frustrating, and to me not good medicine, that I was given a diagnosis in the absence of appropriate tests. All I want is for medical professionals to stop making assumptions regarding diabetes, and conduct the proper tests before diagnosing.
Hi Melitta - I was doing fine then in about 3 months I was a mess. My family DR. diagnosed me as Type 1. My BS level was 567 and AIC was about 10.5 as far as I remember. As well as symptoms coming on fast like frequent urination, tired, blurry vision, cranky fruity breadth. Said at some point I should get and Endo.
I visited with an ENDO bringing some of my blood work. I had been on Insulin therapy (Novolog an Levemir Flexpens) for about 1 year. I had maintained and A1C of 5.5. Worked very hard at figuring out my doses and what to eat. As well as running. He looked at me and said your a Type2. No blood work done. Nothing other that my age, my weight, and my blood reports from my Doctor who still says I'm a Type1. I walked out of his office and never came back.
If I stop my insulin and don't eat I'll be in the 300's in no time.
I've felt from the very beginning I was a Fast Onset Type1 due to a Virus I kept getting 2 times a year for about 4 years straight. I believe a protein chain that was part of the virus mimicked a protein chain in the B cells. And all the symptoms started about a month I was sick last. When the Doctor did a C-Peptide test on the initial diagnosis said I was on the very low scale. So that means to me is that I started presenting as a Type1 but that I was making a small amount still.
My insulin values have changed over time - and my A1C goes up and down as well. I think that I'm making less now than when Diagnosed 5 years ago.
I came across this article on FB, coincidentally, just now. It talks about the dirreing subtypes of diates, and the historyie of how it is determined or labeled, in plain English. I hope this helps.. You may have seen it already and it may be somewhere within these pages and pages of posts on this thread. but it is helpful information. http://www.diabetesselfmanagement.com/articles/diabetes-definitions/type_15_diabetes/all/
God Bless,
Brunetta
I remember it like it was yesterday. It was 1982 and it was a hot and humid August day in New York and we were going to help my future brother and sister-in-law move to their new house. It was a lot of heavy moving â couches, tables, Refrigerator, etc. and when we were done we had dinner at a friendâs house. After dinner I was feeling terrible and the obvious diagnosis was âheat exhaustionâ. So I proceeded to drink some orange juice and still did not help. All I wanted to do was lay down even on the ride home I laid down in the back of the van we had. The next day, still feeling bad, I went to the hospital and even their diagnosis was heat exhaustion. So I went home and my mom fed me more O.J. Another day goes by and still feeling terrible I went to a different hospital and they took some blood and said that my blood sugar was 400+ and I should see an endo. By now it was a week before my wedding and I went from 165 to 147 pounds. At the endocrinologist he determined I was T1D and wanted to put me immediately in the hospital. After I pleaded with him that I was getting married and going on my honeymoon to Hawaii, he gave me some pills and read me the riot act about what to eat and not to eat or drink. After our honeymoon, I checked into the hospital to get better control and learn how to inject insulin.
My GYN is the one who actually sent me for testing because she'd noticed that my A1C that my GP had been doing every year (because of my mom being a T2) was climbing yet my GP didn't see an issue with the number getting ever higher with each passing year.
Did the GTT and was almost admitted because at the mark that they needed to test my glucose they couldn't get a reading (which means it was over 35 - they kept asking me if I was alright and everything spent close to 16 hours in the hospital and they only released me when my numbers started coming down they gave me food instead of keeping me fasting).
At any rate, was given a pamphlet for T2 and figured that was the issue was told an endro would be in contact with me and sent on my way - a month later I get a call from an endro with an appointment time (turned out to be with my mom's endro) had the appointment no mention of type was given to me just you need to take X amount of insulin with each meal and not much else no referral to a diabetic centre and told that I didn't need it because i'd grown up with a diabetic so already knew what I should be doing (WRONG!).
I wouldn't take the insulin at first, took me months before I actually could get the courage to inject myself for the first time - took reading "Think Like a Pancreas" to get my head around using insulin and talking to other's in the DOC (diabetic online community) to feel comfortable with the idea and even then my fear of needles still won out for several years, I took it hap hazard, only after ending up in hospital for an unrelated event did I learn (from the paperwork on my chart that it said T1 n not the T2 I'd assumed) I'd made the wrong assumption (then again i'd never been told out right, n when asked was told ..."i though you figured that out from the start" ::face paws:: talk about feeling clueless n upset!
At any rate, was told that I'd gotten lucky in my honeymoon phase - he said it was because I was near normal weight, active and eating healthy that it helped prolong things). I still don't understand it all but needless to say at times I don't really care if its T1 or T2 or T what ever its just another medical condition that I have to deal with on a daily basis.
I was diagnosed as type 2 at 22 years old weighing 100 lbs.
I had to fight hard for a true diagnosis and after a year was re diagnosed after demanding insulin and c peptide test to a type 1 diabetic.
Insulin dependent 4 years, pumping 3.5 years.