Hi there...wife of a newly diagnosed diabetic

[hoyas33]

Hi everyone

First, let me preface my questions by saying I know that none or few of you are doctors. I know that no one can necessarily give me definitive answers to my questions. So no pressure!

Over the past few months my husband and I noticed that he had been thirsty, urinating a lot...and everyone kept commenting how he was so skinny. He has always been thin, but he is 5'9" 140...which is too thin for his frame. Based on those 3 things, we did a little research and diabetes kind of popped up as a potential cause of the symptoms. Other than those symptoms, he felt fine...in fact, he commented how he has never felt better. We scheduled a physical for March 3rd but last Friday, he was talking to a co-worker who is Type 1 and he had a sugar testing device. He tested my husbands sugar levels and it read 561. He told my husband to go to the ER, which we both did.

He was admitted overnight and their glucose monitor registered the reading "HI", which meant his sugars were over 500. He didn't fit the Type 2 profile other than having an Aunt with Type 2 and either no abnormal ketone readings (we were never told anything about results which is partly why I am here). I would like to think they would have told us if he had abnormal ketone levels and since they said they think Type 2, I can only guess they didn't see significant ketones in his blood.

Overnight his sugars finally came down to 98 after 2 insulin injections and 3 bags of saline drip. The following day he was released, prescribed 2.5 mg Glucotrol and they gave us a 2 page brochure on diet...we were also told that our March 3rd appt. was ok to wait for. He was also not seen by an Endo, just and Internal Medicine MD.

So...the research fanatic that I am...I started to get concerned about misdiagnosis. He is thin, has one aunt with Type 2, exercises regularly, I feed him complex carbs already, normal Blood Pressure, normal Tri-glycerides (Assuming since they didnt' tell us otherwise at the hospital). My question to you all is, can you be Type 2 with none of the main symptoms other than not being in ketosis at that high of a blood sugar and having an aunt with Type 2?

Needless to say, I have been feeding him according to diabetic websites I have been on which is not that much different than our normal diet and he has been taking his dose of glucotrol. He has been averaging 250 all week with nothing below a 200 first thing in the morning. Today he tested his sugar 2 hours after lunch and it read 395 but no trace of ketones. Because he doesn't have ketones in his blood, does this mean he may just be a Type 2? He would be an aberration for sure!

We have a doctor appt. tomorrow with an endo where I am going to have them do a C-Peptide test and an anti-body test. I just don't feel confident they diagnosed him properly.

Finally, how long is Glucotrol supposed to take to start working if he is Type 2? It doesn't seem to be helping at all...it could be his dosage though.

Any advice or comments would be wonderful!

Kristi

[duck]

I'm a Type-1 and I don't have ketones even when something untoward happens and my sugars are higher than 300...I rarely feel "bad" either. I don't know what the threshold is for ketones and diagnosing Type-1, but if you *have* to have ketones to be considered a Type-1, then I guess I am an insulin-dependent Type-2.

LOL

My 2 cents is you are right, he was misdiagnosed. If the endo you see says he is Type-2, make him explain his reasoning and justify it.

[am1977]

To me, it sounds like he is Type 1. It sounds like he had a lot of the Type 1 symptoms, especially the weight loss and high blood sugar levels. I'm surprised there was no mention of ketones or DKA when he was diagnosed. That's something that they usually test diabetics for in these types of circumstances. Then, also, if his blood sugar levels haven't improved so much, it sounds like whatever he is doing is not working for him. He might need to be on insulin.

Duck made a good point. You need to be very direct and ask his doctor these questions. Ask about Diabetic Ketoacidosis, and ask about getting a C-Peptide, if these tests haven't already been done. Hopefully, his doctor will be able to clearly explain things and you will get to the bottom of this all ;) .

l understand your frustration, but I think you will feel better once you start getting these answers. I think finding what type you are isn't as important as finding what works for you whether that's diet and exercise, meds, and/or insulin.

I wish you a lot of luck and hope you will let us know how things go. :)

[Belinda]

Well it sounds to me that the orals aren't working and he may need insulin. Funny thing is that in the hospital theey gave him insulin and it brought it down to a nice number ....98. A brochure was all they gave? Glad your going to see the endo. ask lots of questions...he had the classic signs that I had when first diagnosed as T1 ...good luck.

[hoyas33]

Well, 2 hours after dinner last night his sugars were at 195 and this morning 192...which is better than it has been all week. I found it strange that he had a 200 point drop in less than 5 hours, but maybe what he ate for dinner was a good combo of food. We are keeping a diary of everything, how he feels, what he eats, his levels, everything...

Thanks to all who have replied. I am very anxious for this appointment today, in a good way though...I am a person who just needs to know so I can move forward and help my husband move forward.

He has been positive throughout the whole process, minus a few bouts of moodiness which is to be expected. I feel the same feeling I had when I saw my Father cry for the first time. It is such a strange feeling to see a man that you love humbled. I know he isn't broken and that isn't my point, but he seems more human to me now rather than super human. I wonder if that makes any sense.

Thanks again and I will let you all know what we find out.

Kristi

[archimeech]

How old is he, what type of general health is he in, does he exercise, does he have a sedentary job/ retired? He may very well be a Type 1, not going to hurt if you call the doc early and tell them you want to see an Endo, or if your insurance permits it, get the apt yourself. Your profile and statements so far don't let me know what part of the world you are in so I wouldn't be able to help you with what to expect from caregivers in your region.

[mark-TN]

Kristi-

With your positive attitude I think you husband is in great hands. As you said we are not doctors, and even if we were a diagnosis with out actually seeing a patient and doing test would be frutile at best. Just thought I would put in my two cents worth and maybe it will help you to come up with more questions for your doctor.

Glucotrol is a Sulfonylurea. This type of diabetic med is used for some Type 2’s or Type 1.5’s that are not insulin resistant. This drug stimulates the pancreas to release more insulin. (I am not a fan of this drug as it causes the pancreas to over work any remaining beta cells and burn them out prematurely. In my opinion insulin is a better choice as the correct use of insulin will rest these already taxed beta cells and can help preserve them for many years or indefinitely.) With your husband being thin they would assume that he is not insulin resistant so a med such as Glucophage (Generic name: Metformin), that treats insulin resistance would not be prescribed. It sounds to me like he maybe a Type 1 or Type 1.5(Sometimes called Slow Onset Type 1 or Latent Autoimmune Diabetes in Adults or LADA.)

I think you are doing the right thing by taking him to an endo. An endo will be able to tell you a lot more than the Internal Medicine MD. His BG’s are still way too high and I hope that they can get him started on a program of diet, medications, and exercise that will bring them in line. In my opinion early aggressive treatment is the best way to go to help prevent trouble down the line. The best to you and your husband, and the best of luck with the doctor today.

Mark

[Harold]

Hi Kristi and Welcome,

Your right in asking for a c-peptide and anti-body tests because he does not seem typical for a T2 dx. Typical usually does not apply to diabetes because we all seem to differ in one aspect or another. Now if his c-peptide comes out normal and anti-body negative I would suggest asking the doctor to check for other causes of the diabetes. There are other deseases that may or may not directly cause diabetes, but have a statistically high correlation with diabetes. The diabetes may just be the first thing to show up. Also always ask for and insist if you need to for copies of your lab results. Yes your doctor has them, but doctors over the years seem to come and go or you may have to move out of the area. These come in real handy later on if your seeing a specialist or when you see something changing you can change your diet before your doctor will say anything about it. Most doctors won't say anything until the results get out of the labs normal range.

[hoyas33]

I guess more info would be helpful :stupid: . He is a white male, 29 years old...we live in the South. We both exercise 6-7 times per week, walking for an hour, running, biking, hiking, weights. We have been exercising consistently for 3 years now and he has never been overweight or close to it. I am a recovering health fanatic, borderline OCD...so I always used brown rice instead of white, whole wheat bread, fiberous cereals, whole wheat pasta, beans...etc. BUT, we would drink on the weekends with friends, sometimes in excess...and we always cheated a little with desserts or take out on the weekends. I always felt that we were healthier than 95% of Americans though.

He is a consultant and getting his MBA part time. We bought a house this year and have been going through much change. All positive, but I am sure stress has played a factor in the onset of his disease. He is the type of person who thinks he isn't stressed out when he actually is. I am almost 99% sure stress was the environmental factor that precipitated the onset...

Kristi

[duck]

Now that you have said it again, I have to ask others here: Is it normal for a Type-2 to be thin? In my experience Type-2's are normally fatter (I am NOT trying to be insulting, please forgive me) and Type-1's are more likely to be skinny, sometimes sickly-skinny. Am I wrong for thinking this?

[archimeech]

I think he may very well be a late-onset T1. Harold is correct in getting tested, however. Only way to be sure. Don't let them play off his high sugars and tell you he is T2, find out for sure. If he's healthy and under severe stress it can definitely happen.

[HeatherP]

Welcome Kristi! I can't add anything to what's already been said, everyone has give great advice. I'm very glad to hear your husband has such a great support system in you. This is a very upsetting dx, and many folks have spouses/family/friends that don't want to know or get involved. A supportive spouse is a great tool! You'll find that having Diabetes is a very pro-active disease: most of the day to day stuff is up to the patient.

I hope you're able to get things straightened out so you both can move forward. Please let us know how you both are doing, and I hope you'll visit often. You'll find tons of advice and plenty of friendly people for support - you might want to encourage your husband to stop by, too.

Nice to meet you,
HeatherP

[Lee73]

Welcome Kristi,

This is a great place to talk about diabetes related issues. I, like you, am not diabetic, but my father and sister are Type 1 (diagnosed ages ago).
Oh yes, I remember the brochure. When my sister was diagnosed my parents came home from the hospital with the saddest faces I have ever seen on them holding a brochure about "Juvenile Diabetes". It was a leaflet of three pages, with large writing, bad drawings and very little useful info.
These days however there is so much info and so many resources out there that soon you will be able to file that "brochure" in a scrap book and be done with it.
I agree with most of the others and with you that your feeling that he was misdiagnosed is right on. I am glad you have the appt. with the endo today. I hope you get all your questions answered satisfactorily. Be "pushy" and ask tough questions, that is how my Mom has always approached it.
Finally, I know you are probably going through a rough time with this and I wish you all the best. It will get easier.

Keep us posted,

Lee

[Littlebit63_99]

Kristi,

I have to say that I agree with most of what's been said. I think he is in good hands as you are already very proactive. And, that is the best way to handle this disease for satisfactory long term results.

Stay positive, stay on this forum, ask questions here and at the doctors. Don't ever leave a doctor's office wondering about something......if you forget while you are in the room, go back to the desk and tell them you have a question for the doctor. Insist on answers. Shop around for a doctor you are comfortable with and have confidence in (if your insurance will allow)

Welcome to this forum!!!!!!!!!!

[rzrbks]

Welcome to the Wonderful World of Diabetes and DiabetesForums.

BTW, this is the "Bestest" place for help I've found.

While I Ain't That Thin, I fit the same category as your hubby.

It was determined that I'm 1.5, or LADA. Here are a few links that might explain it better than I possibly could.

http://www.diabetesnet.com/diabetes_types/diabetes_type_15.php

http://diabetes.about.com/cs/type1diabetes/a/type_1_subtypes_4.htm

http://www.healthatoz.com/healthatoz/Atoz/dc/caz/diab/dia1/alert08052003.jsp

http://clinical.diabetesjournals.org/cgi/content/full/21/2/93

[ksa01]

I was diagosed a type 1 diabetic at the 29yrs. When I was initially diagnosed, the doctors assumed I was type 2 mainly because of my age. I was not overweight and didn't have any ketones and therefore no dka, but had all the other classic symptoms -- thrist, hunger, weight loss, frequent urination.... It wasn't until the endocrinologist got the results to the c-peptide test and another test (GAD-which detects the presence of antibodies that present in most type 1 diabetics) that they started referring to me as a type 1 diabetic.

It's been my experience that some doctors still have the preconceived notion that you have to be diagnosed as a child or teenager to be a type 1 diabetic - not true as many of us can tell you.

Anyway, my point is that you are doing the right thing be asking for more tests to actually confirm your husband's diagnosis. I'm with you -- give me the factual data that confirm the diagnosis.

Good luck.

[hoyas33]

Doctor visit was ok, ok because we don't really have more information on what type he is. All we do know is, if he is Type 2...he is not insulin resistant which occurs rarely in Type 2's. The doctor drew this conclusion because he wasn't overweight...apparently there is a strong correlation between the 2. If he is Type one, he found it odd that he did not go into DKA. So basically, my husband doesn't fit either profile exactly.

I pushed the Cpeptide and Anti-body test and wasnt' afraid to ask questions. As with all doctors, and sorry if any of you are doctors, but he was either annoyed or impressed with my questions...I couldn't really tell. I am not the biggest fan of doctors because in my 30 years...I have yet to meet one with a pulse. Off the subject though...

So then it came down to controlling the diabetes which the glucotrol was not doing, or at least he didn't feel we necessarily should wait to see if would start to work, he wanted to get his sugar under control now and he felt that insulin was necessary for his diabetes to become manageable. He is now on Novalog pen, 5 units before each meal. He is on Lantus, 10 units before bedtime. He is to test his blood sugars before each meal and bedtime, and before he exercises. We are also equipped with glucose tabs should he become hypo. All of this is quite surreal and a little, ok a LOT stressful. But we are doing ok.

I guess now we just await the test results and hopefully gain knowledge from that. If they are for some reason inconclusive...we will try orals again once he stabilizes...that is if the doctor thinks it is ok. My husband would rather be on orals if it is at all possible to control it that way. Good news is, his sugars were 84 before bed, so the Novalog worked like a dream. Bad news is, his sugars were 204 this morning...I don't get it, I guess the Lantus maybe needs to be adjusted.

Thanks to everyone for the support! I will keep you all posted.

Kristi

[mark-TN]

Kristi-

The Lantus will take about 3 days to "ramp up" in his sytems. After three days if fasting BG is still high than a change would be warrented (with doctors advise of coarse).

I'm sorry that you are still in the dark about what type of diabetes your husband has. Did the doctor mention anything about Slow Onset Adult Type 1 (or often called Type 1.5). It seems to me that this is very possible. If this is the case he would show positive for antibodies and also show a positive C-peptide test(although most likely it will be low or below normal).

I hope you can get a definitive answer soon. I think the insulin is the way to go at the moment as getting his sugars down is the most important thing no matter what type he is.

Please take care.

Mark

PS: If you do not feel comfortable with your doctor, find another one, if this is possible. It is very important that you have a doctor that you can trust and that you can count on for support.

[HeatherP]

Kristi,

1. I was not in DKA when I was dx'd with a fasting b/s in the upper 400's. (and I'm T1)

2. You cannot depend on the "usual" things to be the same for your husband. We all find that there are personal intricacies that don't adhere to the rules of Diabetes.

3. You will need to meet with a Certified Diabetes Educator (CDE) and/or dietician. This person will be a wonderful asset of information and help in determining what dosages work, how to manage them, and teach you both how to take proper care of your husband. He needs to learn to count carbs.

4. You need to get a glucagon kit. The doctor has to rx it for you. Both you and your husband should familiarize yourselves with how and when to use it. Anyone taking insulin should have one - it's for really really bad low b/s. Learn the signs of hypoglycemia and always have something on you to treat it with.

5. Lantus usually takes 3-4 days of injections before you get the full effect, so give it some time. You'll find the right dosage I'm sure.

Keep us posted and keep asking questions!
HeatherP

[am1977]

First, I wanted to say I think it's great you were able to put everything out in the open, ask your questions, and receive feedback. :thumbsup: If the doctor is a good one, he will understand and will want to try and help you both out in your learning process. I understand how overwhelming, confusing, and frustrating it all is at first. That's why it's important to ask questions, do some research, and find out all you can about this disease. In my opinion, knowledge really is power when dealing with DIabetes.

I think Mark and Heather made Excellent points :thumbsup: . I think the suggestion to see a CDE/ registered dietician is a particularly good suggestion. A lot of times, doctors don't have the time to really sit down with you and answer all your questions. A CDE/dietician can do this and is often a big help in managing this disease. She or he can really work with you and help you stay on track.

One other thing I wanted to mention was about insulin. Unfortunately, insulin isn't a cure-all.(Believe me, I wish it was!) Being on it doesn't mean that it's going to take care of every high or low. As I know from experience, that is not the case. In fact, sometimes if the insulin dose he gives himself isn't that precise or if he underestimates how much he eats he can end up high. Just something to thinnk about.

I know it's rough at first, but try to hang in there. It will get easier with time. I hope you will both feel free to drop in and ask any questions any time, I know we all will try to help you out if we can.

Take care! :)

[hoyas33]

Thanks again to everyone who has lent their support and wisdom. It has been so comforting.

His blood sugar has been at good levels, his lowest being 84. He said he experienced anxiety at this level...which brings me to my biggest concern, him becoming hypoglycemic. Last night we had reservations at a restaurant and we don't have a way to carry insulin, the Novalog needs to be kept cold...so last night he didn't start eating until 1 hour after his injection which FREAKED me out. The doctor said to eat within 30 minutes. Good news is he didn't get hypoglycemic and we bought a soft cooler today with an ice pack. Is this how you all keep your insulin cold?

So, how do you keep the hypoglycemia in check and what do you use when you do become hypoglycemic? I am gathering from threads here that it is pretty inevitable he will experience it, but the thought terrifies me. I will talk to the doctor about a glucagon kit.

I bought orange juice because of Steel Magnolias. Who doesn't remember Julia and the orange juice?

[MarkMunday]

Kristi,

Welcome to the never-ending learning curve! I have been T1 for a long time. And my daughter was diagnosed T1 6 weeks ago. I picked it up in a random blood test, which came out at 322. She wasn't feeling particularly ill at the time. A blood test revealed that her antibodies were sky high. But there were no keytones in her urine. So DKA is not a pre-condition for the onset of T1.

Sounds like insulin is what your husband needs. And Lantus/Novolog is a good combination. I noticed that you are testing before meals. You should really test after meals too. It is the only way that you will be able to figure out how much injected insulin is required to cover different carb loads.

Ideally, you want the blood sugar level to have returned to the level it was before the meal, within 2 hours of eating. So test 2 hours after eating. It is also instructive to do the ocasional test 1 hour after eating. It shows how high the blood sugar spikes after meals.

The general rule is, the more carbs in the meal, the higher the spike will be. And the harder it is to estimate how much injected insulin is required to get the bgl back into the target range. The feedback you get from testing will enable you to work out a carbohydrate ratio and fine tune the Novolog injection amounts. It will also enable you to choose foods that don't play havoc with blood sugar levels.

You mentioned the issue of keeping insulin cold. It is important that Lantus be kept in the fridge. It's action degrades rapidly if you don't do this. But Novolog can be kept at room temperature for as long as a pen cartridge lasts. I normally carry it in my pocket when I go out. And the body temperature isn't a problem.

I can understand your concern with hypoglycemia. But, generally speaking, it is only a problem if blood sugar levels are volatile. Some people seem to get away with eating anything. But I find that the only way to avoid a rollercoaster ride is to stick to a reduced carb-diet. The fewer carbs are consumed, the smaller the injected insulin requirement is. And the less insulin you inject, the smaller the chances of hypoglycemic reactions are.

Having ready access to a glucogon kit is a good idea, just in case. But in the 27 years I have been T1, it has only been used on me once. Your husband will quickly learn to recognise the warning signs. Encourage him to always carry dextrose tablets (or similar) so that he can take prompt action when he feels his bsl dropping.

Cheers,

Mark;)

[soremom]

I always keep my insulin in my purse. I use humalog and I believe it is good for 28 days unrefrigerated. The paperwork that comes in the insulin box should state how long you can keep it out of the frig.

Orange juice is good for hypo's, brings it up quick. You can also get glucose tablets, which are easy to care. I get mine at Wal Mart. They have the tube of ten and then a 50 container. I buy the tube then refill with the other. Easy to throw in a purse or pocket.

Hope this helps some.

Kim