I was diagnosed with type 1.5 today

[BrendaK]

Wow -- that was hard to write.

I have been part of the TrialNet study for 2 years. I have very high levels of antibodies for type 1, but my blood sugars have been fine. I go in every 6 months for an oral glucose tolerance test with the Trial Net study.

Today was the day of my test. They use a finger prick to test bg fasting and at the 2 hour mark -- just to make sure your okay to drive home... The other tests are run at the lab.

Fasting today was 112 -- I'm always in the low 100's.

2 Hour mark was 288. OMG!!! They even checked it twice.

So if it's over 200 they have to bring in the doctor and he told me I have Type 1.5 diabetes (LADA). I have had all the markers for a while. I'm 30, slim, positive antibodies for diabetes, hashimotos thyroiditis, insulin dependent gestational diabetes with both pregnancies, and obviously a history of type 1.

I was down to 199 at the 2 1/2 hour mark.

Our new insurance starts July 1st, so he said I can wait to go to the doctor until then. But keep checking blood sugars, yadayadayada, and I know all of the danger warning signs to look for. I completely tuned out when he said I had diabetes...

I'll be interested to see if my C-peptide levels and A1C have changed much -- I'll get those results back in a few weeks. TrialNet is going to have a hayday with my numbers.

The saddest saddest saddest thing is that I have always thought that I would trade places with Carson for anything. I wish I had it and not him. Well, I DO have diabetes, and so does he. That just breaks my heart.

Thanks for listening. I'll keep you posted.

[WestinsMom]

Like I said in my private email... I wish there was something I could do for you, but I know there isn't. If there is, just ask. I glad your mom is there. I hope she is as comforting as she seems. (I really enjoyed meeting her the other day!)

[kel4han]

Brenda, I'm so sorry.....this will be alot for you to go thru all over again, reguardless that you know how to care for yourself. Its a good thing you participated in that study, you found out ahead of the pending illness and possible damages.....

I was diagnosed 9months before Maddison, they assumed type 2, but I was 28 and slim just like you. I suffered alot for weeks as they tried to get the oral meds to "take effect" its great that you will avoid weeks of something like that happening, I know it doesnt help in your sadness and fear, but you will be able to pick up faster with the quick jump onto insulin....hoping you have an easy transition into getting yourself figured out!

[Hollyb]

Jeez I'm so sorry to hear your news. What a blow.

Hope things are OK until you can get to your doctor.

[BrendaK]

Thank you everyone for your kind words. This is such a good place to be able to vent to people who really understand.

It will be very interesting to see what is to come in the next few months. My blood sugar after a VERY low carb dinner was 90. (I've hardly eaten anything today). It looks like this was caught very early though. I'll have to check it more when I eat a lot of carbs.

Kel4han -- were you diagnosed as LADA or type 1? I'm curious what doctors do when they catch it early like this.

I'm going to call Carson's endo tomorrow and ask for some referrals to doctors here who deal with LADA. I don't think my family doctor will be much help.

[yeswe'rebothD]

Brenda--- Oh, I'm so sorry to hear of this! You know I'm here if you need to talk. PM me if you don't have my #. I really wish I could have made it to the Zoo, and we WERE in town, but dh's unemployment is about 20% of his most recent income. Definitely NOT in the spending mood, ya know?

BTW-- if Draznin refers you to a certain Endo, man I can't remember his name, there's one he referred me to after my pg with Grace, but he treated me like I was a child, talked down to me, etc. I think I'd have to hear the name to be sure.

You have extra meters? You know I have a BUNCH now from everyone's donations! Just so you don't end up with your readings mixing in with Carson's.

I'll be praying for you, your family knows what to look for if you get worse before the insurance kicks in, right?

[kel4han]

Brenda.....I was only told I was type 1 when my new endo called and said they were calling in an Rx for insulin....no explanation....I asked them why and they finally said they had gotten back my labs with GAD antibodies and Cpeptide <1....I never pursued the details of LADA or 1.5 becuase my dad was a type 1 and at the time I just went with that........but, I did not need any basal insulin for over 14months after diagnosis, and neither did Maddison for about 4months....we just used Novolog for meals. Basal and Novolog together about killed me at first. I had gestational diabetes both pregnancies as well, gained 72lbs w/ Maddison and after that I was never quite the same although I lost the weight and went back to my pre-pregnancy weight of 125lbs fairly quickly. Knowing what I know today.....I am SURE I had post-prandial issues for years..based on my symptoms which I repeatedly complained of so they would do a FASTING glucose every year but it was always fine.....well of course! Post prandial was my issue in the beginning before it came to this .

Were you in the preventative study then?

[Mama Belle]

Wow, Brenda! I am so sorry! How hard this must be for you, knowing all of the work and stress that accompanies D. I think any mother would gladly take on D to relieve their kids of having to deal with it, but what a bummer to deal with it yourself too! I know you will do just fine in the long run, but for now this just a huge bummer.:(

[BrendaK]

Thanks again everyone. I do have PLENTY of meters and extra test strips. Carson and I are going to decorate the meter covers today to tell them apart because they are exactly the same. He asked me yesterday if I had diabetes and I told him that the doctor thinks so and I might have to take shots sometime soon. He immediately said -- No mom, I think you should just go on the pump! How sweet is that -- he's offering me advice.

I think Carson felt a sense of relief -- that he's not the only one in our family now that has diabetes.

The TrialNet nurse called me today -- the nurse that ran my test yesterday. She said she called the study headquarters in Indianapolis yesterday and they are going to red flag my bloodwork and run it right away. Usually it takes them about a month to get the test results back, but I'll probably have them in just a couple of days. Maybe even by tomorrow.

Then she said that they will probably want to do a "confirmatory" test. That means do the OGTT AGAIN. Yuck. But I will gladly go along with them. With our new insurance starting in July, I have to pay a pretty high deductible. But if I go through TrialNet, it's totally free and I can take all my labs to my doctor and hopefully only pay for an office visit.

I feel like I'm in a twilight zone. Usually when you're diagnosed with diabetes, you're rushed off to the ER or something. But I went home, everything's fine, but I know that my life will be changing a lot in the next few weeks and months. No one really knows how quickly this will progress, but everyone knows that the end result will be complete insulin dependance.

I am thankful it was caught early. I don't think I said before that this has been gradually progressing. I have had 4 OGTT with TrialNet. In the first 2 tests my 2 hour number was around 130ish, then last time it jumped up to 160. I thought that this time I'd be around 180 -- just gradually worse. When that meter read 288 I just about fell off my chair. So something has changed drastically. I hope that by my participating w/TrialNet, that they'll learn SOMETHING from me.

Thanks again everyone :cwds:

[zimbie45]

OH brenda !!! :eek::eek::eek:
I am soooo sorry.. I have been reading your post hear and i am in tears... ( sorry i think my stress level has just about had it, im turning into an emotional reck).. I have too said many times id like to take her place. YOU have raised such a sweet and loving boy, to say the things that he has, and I also think this si very cool that you are keeping him informed and " decorating the meters together, rather than just his or just yours... Take care adn keep us posted !!!

[Momof4gr8kids]

Brenda, Wow!
I knew you were doing trial net with possitive antibodies, but this is still a shock.

I hope you are doing ok, and that when the shock and newness wears off that you are ok.

Take care, Jamie

[Ellen]

I too am sorry to hear the news. Wishing you the best of health of course. Two of my friends are parents of children with diabetes who developed LADA. If you would like to email with them, send me a PM with your email address and I'll put you in touch.

[Twinklet]

Oh Brenda, I'm so sorry! It sounds like you're handling it well, though. Do you have some good Endo options in your area?

[BrendaK]

Got the TrialNet results back today. Not suprising. Everything after the 30 minute mark was way up in the mid to high 200's. But my A1C was only 5.7 -- up from 5.4 last time. And I was again positive for the 3 antibodies.

I was disappointed that they didn't send any results for C-Peptide or insulin levels. But the head doctor in Indianapolis is suppossed to call me -- not sure exactly what he wants to discuss. Maybe I can ask him some more questions. The nurse mentioned today that they'll probably ask me to repeat the test to confirm it.

So now I wait to get in w/the endo...and who knows what they'll do.

[Momof4gr8kids]

How have your b/gs been? Are you on insulin, or anything yet?

Take care, and please keep us posted, Jamie

[otter005]

i have often thought this is what my SIL has. She was dx type 2 after the birth of her second child. always GD during pregnancies. She is 5'7" 145lbs and 32 years old. 29 at DX. I could just never understand her dx. She's on 5 different oral meds and injections to control her Diabetes.

[BrendaK]

Sounds a lot like my story. Has your sister been tested for antibodies to type 1? If she has type 1.5, some oral medications can actually damage the pancreas even faster. My regular family doctor had never even heard of type 1.5, so that tells me that's it's not common knowledge w/all doctors. Fortunately, my doctor referred me without question to an endo and didn't try and treat it like a type 2.

In Pumping Insulin, by John Walsh, he says that if you have insulin dependent gestational diabetes AND the GAD65 antibodies, then you HAVE type 1.5. I didn't know that at the time. (Neither did my OBGYN). By pregnancy #2, I was insulin dependant at 20 weeks and by the end I was taking SOOO much insulin my insurance company started questioning it. Something like over 160 units a day (of Regular and NPH). I would guess that since you have a daughter that's type 1, there is a really good chance yours sister has the GAD65 antibodies and is actually a LADA.

BTW, I'm not on any insulin or anything yet. I'm waiting for the endo to call. Which reminds me -- I need to mail them my test results. Since it's a research study, I have to personally give them the test results -- TrialNet can't legally give anything to my doctor because of confidentiality reasons.

[BrendaK]

I just talked to the Dr. in Indianapolis that's in charge of the research study. He just wanted to follow up and I was able to ask some questions. He said that from his perspective, I am a type 1 diabetic, NOT type 1.5 Maybe I'm confused about the terminology. He said that 1.5's have markers of both type 1 and type 2. Along w/the antibodies, there is usually some form of insulin resistance as well with being overweight or something like that. I'll have to do some more research.

But with all my bloodwork and history, he said I'm a type 1, just caught very early. I'll be interested to know what my endo says.

Now I'm confused...

[Mama Belle]

I just talked to the Dr. in Indianapolis that's in charge of the research study. He just wanted to follow up and I was able to ask some questions. He said that from his perspective, I am a type 1 diabetic, NOT type 1.5 Maybe I'm confused about the terminology. He said that 1.5's have markers of both type 1 and type 2. Along w/the antibodies, there is usually some form of insulin resistance as well with being overweight or something like that. I'll have to do some more research.

But with all my bloodwork and history, he said I'm a type 1, just caught very early. I'll be interested to know what my endo says.

Now I'm confused...

I was just reading about Type 1.5 in my Diabetes Forecast magazine (I wasn't aware that the current Surgeon general has it) and they said that it has an autoimmune component and is similar to type 1, but that often folks with LADA are treated on oral meds, like people with type 2, for years before ever needing insulin because it takes longer for cell destruction. It also said that people with LADA always have the antibodies.

[BrendaK]

Too much confusing terminology :rolleyes:

I still think I have LADA. The link from the CWD website fits me to a T http://www.childrenwithdiabetes.com/clinic/lada.htm

The doctor I talked to today seemed to describe "Double Diabetes" found herehttp://www.childrenwithdiabetes.com/type2/t2_dd.htm (This doesn't describe me at all)

[yeswe'rebothD]

Brenda-- I just have to let you know that while I was pg with both girls, I was up to 150+ units daily, and that's with pumping (you're supposed to use up to 20% less total daily units with pumping than with any injection method).

All that stuff would confuse me too-- I hope you get a clear answer so you can get proper treatment!

Btw, are you ever gonna call me? LOL... I'll PM you my cell # too.

[kel4han]

Brenda....how have you been adjusting? You know, I was a big part of the diabetesforums for adults when I was diagnosed and I constantly questioned my being LADA vs 1.5 etc. When someone said to me...why does it matter? And I agreed and gave up on the trying to determine. But, now I find that I still question this alot, partly just becuase I am interested in why I am so NOT ordinary. I am still only on 3units of basal after 16months of diagnosis. I can still take my pump off all night if I drink alot of alcohol.....all those little things that make me think I am so not the typical Type 1. I kinda wish I had a better answer, but my endo never felt compelled to do additional testing even at my request. Where did you start for testing? I know I had the GAD antibodies....a cpeptide of less than 1.....I was gestational non-insulin dependant both pregnancies, though I am sure it would have helped tremendously if I was on something, especially with Maddison, who is now "D" I just dont get why they think gestational diabetes doesnt typically increase the risk for the child. :confused: I am sure MOST 90% of the time it doesnt but why why why is still the questioning in my head with all of this.

[lilituc]

i have often thought this is what my SIL has. She was dx type 2 after the birth of her second child. always GD during pregnancies. She is 5'7" 145lbs and 32 years old. 29 at DX. I could just never understand her dx. She's on 5 different oral meds and injections to control her Diabetes.

I've heard of that happening with MODY also - GD and then "Type 2" that doesn't act like Type 2.

[Ellen]

: Cochrane Database Syst Rev. (javascript:AL_get(this, 'jour', 'Cochrane Database Syst Rev.');) 2007 Jul 18;(3):CD006165.http://www.ncbi.nlm.nih.gov/corehtml/query/egifs/http:--www3.interscience.wiley.com-images-wiley_interscience_134x30.gif (http://www.ncbi.nlm.nih.gov/entrez/utils/fref.fcgi?PrId=3058&itool=AbstractPlus-def&uid=17636829&db=pubmed&url=http://dx.doi.org/10.1002/14651858.CD006165.pub2)
Interventions for latent autoimmune diabetes (LADA) in adults.

Brophy S (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Brophy%20S%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstractPlus), Brunt H (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Brunt%20H%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstractPlus), Davies H (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Davies%20H%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstractPlus), Mannan S (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Mannan%20S%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstractPlus), Williams R (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Williams%20R%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstractPlus).
BACKGROUND: Latent autoimmune diabetes in Adults (LADA) is a slowly developing type 1 diabetes which presents as non-insulin dependent diabetes and progresses to insulin dependence. However, the best treatment strategy for LADA is unclear. OBJECTIVES: To compare interventions used for LADA. SEARCH STRATEGY: Studies were obtained from searches of electronic databases (including MEDLINE, EMBASE), supplemented by hand searches, conference proceedings and consultation with experts. SELECTION CRITERIA: Selection was in duplicate by two independent reviewers. RCT and controlled clinical trials evaluating interventions for LADA or type 2 diabetes with antibodies were included. DATA COLLECTION AND ANALYSIS: Two reviewers independently extracted data and assessed study quality. Studies were summarised in a descriptive manner. MAIN RESULTS: Searches identified 8067 citations. Eight publications (seven studies) were included, involving 735 participants. All studies had high risk of bias. There were no data on use of metformin or glitazones alone. Rosiglitazone or sulphonylurea (SU) with insulin did not improve metabolic control significantly more than insulin alone. SU alone gave either poorer (one study, mean difference in HbA1c 2.8% (95% confidence interval (CI) 0.9 to 4.7) or equivalent metabolic control compared to insulin alone (two studies). There was evidence that SU caused earlier insulin dependence (insulin treated at two years: 60% (SU) and 5% (conventional care) (P < 0.001); classified insulin dependent: 64% (SU) and 12.5% (insulin group) (P = 0.007)). No interventions influenced fasting C-peptide, but insulin maintained stimulated C-peptide better than SU (one study, mean difference 7.7 ng/ml (95% CI 2.9 to 12.5) and insulin with rosiglitazone was superior to insulin alone (one study) at maintaining stimulated C-peptide. A pilot study showed better metabolic control at six months with subcutaneously administered glutamic acid decarboxylase (GAD) GAD65, a major autoantigen in autoimmune diabetes, compared to placebo. There was no information regarding quality of life, mortality, complications or costs in any of the publications. Time from diagnosis varied between recruitment at diagnosis to recruitment at nine years of disease duration and there was a great deal of variation in the selection criteria for LADA patients, making it difficult to generalise findings from these studies. AUTHORS' CONCLUSIONS: There are few studies on this topic and existing studies have a high risk of bias. However, there does seem to be an indication that SU should not be a first line treatment for antibody positive type 2 diabetes. There is no significant evidence for or against other lines of treatment of LADA.
PMID: 17636829 [PubMed - in process]

[BrendaK]

Thanks Ellen. If my endo wants to put me on those pills, I'll find another doctor ;).

I received a response from the Ask the Diabetes Team to questions I had. I assumed I had LADA because I thought I fit the profile. But I've now had 3 seperate doctors tell me I have type 1, just caught very very early. Here is my question and their response:

Question

I have been participating in the TrialNet Natural Family History study for the last two and a half years because my mom and my son both have type 1 diabetes. Through the study, they have found that I have high levels of GAD-65, ICA512, and ICA antibodies. Every six months, I go in for a two hour OGTT through TrialNet. The last test that I had diagnosed me with diabetes. My blood sugar at two hours was 258 mg/dl [14.3 mmol/L].

I am currently awaiting an appointment with an endocrinologist and have been monitoring my blood sugars at home. So, do I have type 1 diabetes or do I have LADA? Two doctors have said I have type 1 diabetes, but from what I read, it looks like LADA. I'm 31, slim, had insulin dependant gestational diabetes, antibodies, and Hashimoto's thyroiditis. I also do not have ketones. I am still making some insulin. My fasting numbers at home are in the 135 mg/dl [7.5 mmol/L] range, postprandial at home averages around 180 mg/dl [10.0 mmol/L] and up to 200 mg/dl [11.1 mmol/L], if I eat a moderately high carbohydrate meal. If I eat fewer carbohydrates, my numbers stay around 100 mg/dl [5.6 mmol/L].

Can you explain the difference between type 1 and LADA? Do I have type 1 since I have all three antibodies and just caught it early? One doctor told me I was in the honeymoon phase of type 1, but I have not started any insulin yet, or had any typical symptoms or ketones. Wouldn't LADA be a better diagnosis -- a slow onset of symptoms in an adult?

What are the treatments for this when I am still producing insulin and I don't always know if I will come down on my own or not? For example, one night I was 195 mg/dl [10.8 mmol/L] after dinner, but came down to 95 mg/dl [5.3 mmol/L] at bedtime. But, last night I was 143 mg/dl [7.9 mmol/L] after dinner and went up to 176 mg/dl [9.8 mmol/L] at bedtime. How do you treat this?

Answer:
Type 1 diabetes and LADA are both autoimmune forms of diabetes. The only difference is that we think of LADA as being slowly progressive and the reason for the presentation later in life. You have all the autoimmune markers of type 1 diabetes. I thank you for participating in TrialNet. Without your participation, and others like you, we would not be able to learn more about some of the questions you raise. For instance, we are now picking up people earlier in their course of type 1 diabetes. We know they have diabetes but still make insulin, like yourself. These are not mutually exclusive. It is just that the diagnosis is being made earlier. LADA is typically in people who are over 40. We do not know how long the typical patient with LADA has had autoantibody markers or how long they have experienced a fall in insulin secretion. This information needs to be learned from studies like the one in which you are participating. Another thing to note with patients with autoimmune diabetes, whether we call it type 1 diabetes or LADA, is how long beta cell function can be maintained and can it be augmented by some therapy so that insulin secretion may be maintained longer than the natural history. Whatever you call it, you have autoimmune diabetes. For you, an additional question is whether you are better off with early insulin therapy or not. There is likely some stress on the beta cells when your blood sugars rise higher than desired. Would it be better to be on small doses of insulin and help rest the beta cells? That's something to discuss with an endocrinologist.

[BrendaK]

I wanted to post an update of what's going on w/me. I went in last week to repeat the Oral Glucose Tolerance Test to confirm my diagnosis for TrialNet. Once again, I failed, big suprise. My 2 hours number was 233. Yesterday they called w/all the numbers. I started at 120, but at the 30 minute mark I had already gone up to 200. And I stayed in the 200-250 range until the 2 hour point when the test was done.

So, the nurse here that runs the study finds out yesterday that I can't get in to see the endo until SEPTEMBER 21st!!! That is with URGENT marked on all my charts. Obviously a problem, I need to get in sooner than that. So she's going to have the endo nurse get in touch w/my family doctor and hopefully then can decide what to do w/me over the phone.

Then the Indiana headquarters for TrialNet called me today to follow up on the second set of tests. She felt terrible I couldn't get in w/the endo, but said they are sending me a new meter AND a bunch of test strips. They didn't want me using Carson's anymore ;). They don't want me in DKA.

After talking to lots of doctors and nurses over the last month, EVERYONE agrees that I have type 1, and not LADA. This was just caught very early. I think I'm the only one that thought LADA (or type 1.5). I don't think I want to admit to myself I have type 1 because I'm not in DKA and my numbers haven't gone above 288.

It also seems like several doctors and nurses say that I'll probably end up going on a small dose of Lantus at first. I'm tempted just to start myself on a couple of units to see what happens. But I'll wait until I see a dr., whever that may be. :(

I'll keep you posted as things progress.

[Mama Belle]

Thanks for the update Brenda. I would also be concerned that I couldn't get in to see an endo until September! :confused: I am sorry you're dealing with all of this, but am glad you are being so proactive about your own care! :D Keep strong and please keep updating us on your journey through this process.

[LJS118]

Sorry to hear of your diagnosis. That really stinks!

I also have hashimoto's disease...i never knew that had anything to do with diabetes...does it?

[BrendaK]

Maybe I'm going downhill faster than I thought. Pre-dinner number tonight was 201, post dinner was 231 :(. That's the highest I've been at home, and the predinner number was probably affected by some corn chips I had a few hours earlier, but STILL... Then I checked for ketones, haven't done that yet w/the precision xtra and they were 0.2. Trace ketones, but that still freaked me out.

I need to get these doctors on the ball and someone needs to see me soon!!

But, the good thing is that TrialNet sent me an Accucheck Aviva w/the Multiclix lancets and 300 test strips and lancets Horray!! Now I don't have to feel bad about using Carson's.

And, by the way, Hashimotos is kind of related because it's an autoimmune thyroid disease. Autoimmune being the key word. Celiac, Type 1 diabetes and Hashimotos are very closely linked.

[WestinsMom]

I know that I don't have to worry about you...but I am! Be careful please!

[BrendaK]

This is so backwards. My numbers are really starting to run higher, so I need to go to my family doctor and not wait for the endo. So I just called family doc. Said I was diagnosed with type 1, no treatment plan yet, making trace ketones, need to get in. Then the lady says, how about August 2nd? WHAT IDIOTS. I said if I wait until then I could end up in the ER.

So she finally got me in Saturday morning and made it clear she was doing me a BIG favor by "unblocking" some of the doctors schedule.

I love my family doctor, though. It's just the receptionist that needs some help :mad:

[Nancy in VA]

When my 2 year old was diagnosed, I was sent home with the pager # of the endo in the hospital but told they weren't accepting new patients and didn't take our insurance. I called the one endo that did accept our insurance and started to get the run around until I insisted that we were a new diagnosis and she was 2 and she NEEDED to get in to see an endo to start long-term support. Boy it was a pain

[LJS118]

Okay...I know this sounds dramatic. But if you're doctor isn't helping you by seeing you sooner go to your nearest ER room. You'll get medical treatment fast for sure.
Keep us posted
Youre in my prayers

[LJS118]

Or...I have another idea... Wait until after hours and call the doctor's answering service so you can personally speak to your doctor. Tell him what's going on, and maybe he'll make sure he has his lovely receptionist to get you in ASAP

[WestinsMom]

That is a great idea! I will remember that when I want to speak to our pediatrician. (I can call our endo anytime.) :)

[BrendaK]

I'm going to make sure that the doctor knows that the receptionist thought it was fine for me to wait a week!!!

I'd go to the ER -- but since it's not a REAL emergency yet, I'd rather not have to pay my $1500 insurance deductible on the spot. (Our insurance just changed for the worse...)

The reason I want to see an endo, is because my family doctor would have to idea what to do!!! My numbers are just all over the place and this is not a clear cut case of a type 1 in DKA. I KNOW my doctor, who is actually a PA does not deal with early type 1 cases every day. So we'll see what she says Saturday, I hope it's not a waste of $$.

[kel4han]

Oh Brenda! I went through all this with my diagnosis too. My Primary Doctor put me on Metformin, until I could see an Endo 6 weeks away. He told me if I continue to stay around 250 go to the emergency room, so he checked my BS right there and it was 280. :mad: I still have never had Ketones even with BS of over 450. He said sometimes oral meds take awhile to work, like 4weeks! So I just went home. Say what!? So, here I was 280's at the lowest every day waiting for these pills to "work" He knew my dad was type 1, he checked Cpeptide but never GAD antibodies. He called me 1.5 or LADA becuase of my age 28 and being thin. After about 2weeks I continued to see no changes and went to the ER. They did nothing for me. Gave me some Novolog to which I plummeted, sent me home with Actos added in. Waited another 2 weeks, went back to PCP in which he started me on 5units of Levemir and helped me learn to inject on a Saturday after hours. He was great! The Endo finally did GAD antibodies and called me at home to say the oral meds I could stop taking! Knowing now, I should have actually NOT been on Basal (eating was my only problem) but just Novolog with meals which I switched to when Maddison was diagnosed 9months later......but, in the long run I am still paying the Levemir to saving my remaining cells (becuase 5units is ALOT when you dont need a basal yet) and I am still honeymooning at 17months after diagnosis. I had once asked my Endo about specifics, LADA, MODY, etc and they responded the same way with "why does it matter, the outcome (insulin) is the same." So, I agree. In learning myself about treatment options and from online forums I was able to take myself off the Basal Levemir and do only Bolus with meals for about 4months, but then my fasting started to increase a little like maybe 30pts. So, I started on 2units basal finally again after 13months of the original diagnosis. It was sooo frustrating for me to realize the Endo's didnt really care about me and my own situation. I tried to explain time and time again why I didnt need Basal and they never understood. So, I just made every change myself, with no guidance from doctors. I am doing better today because I have been apart of adult "D" forums and have learned everything from them, not from what doctors are telling me I need. Maddison and I are both pumping now, and I am still only 30% basal at just 2.85 units a day and the other 70% is bolus. I hope you continue to learn more about you, you already know that you know more than the doctors! :eek: Check out diabetesforums.com I learned everything from these guys. Hope you are holding up! Its hard to have double "D" living in your house! Talk about chasing numbers!:cool:

[LJS118]

Hi Brenda,
did you see the doc today???? what did he say???how are you doing?
please let me know, i've been thinking about you.

[BrendaK]

Thanks so much for asking. I went this morning to my family doctor who was SOOO nice. She didn't even pretend to know how to deal with me -- she is going to send me to a new diabetologist that is in town, that I didn't even know about. She said I can get in with him within the next 2 weeks. I'm really glad I'm going to this guy -- the endo I was going to go to is very compotent, but he and his staff are not very friendly or easy to work with. Even my doctor this morning was saying how difficult they were. She says this new guy is the best. In the meantime, she is going to talk to their CDE's and they may suggest some form of treatment right away. I'll know more Monday -- more waiting.

The bad thing about today -- now I have "new onset diabetes" in my official medical records :(.

Thanks again for asking!!! I need to check out the forum kel4han mentioned!

[LJS118]

I'm so happy that you're getting treated now...and that you've found a doc. Are you on insulin?
Take care of yourself and let us know how everything is going.

[Momof4gr8kids]

If I remember correctly you were trying to wait until the right time to have the dx in your med records for insurance perposes. Did you make it, or will this now be a pre existing?

Please keep us updated. I hope you are feeling ok, and that they give you treatment options soon.
Jamie

[BrendaK]

I just got a call from the new endo's office and they want me in tomorrow at 8am. I'm very impressed. It's a 40 minute drive and I didn't know if I could find a sitter that early, and the receptionist said the kids are welcome to come with me if I don't have a sitter. Yeah!! Finally a doctor who will see me!!!

[BrendaK]

If I remember correctly you were trying to wait until the right time to have the dx in your med records for insurance perposes. Did you make it, or will this now be a pre existing?

Please keep us updated. I hope you are feeling ok, and that they give you treatment options soon.
Jamie

Yep, I made it and this will not affect my preexisting stuff on the insurance. Bummer that I have a $1500 deductible now, but at this point I really don't care about the $$.

[Mama Belle]

I just got a call from the new endo's office and they want me in tomorrow at 8am. I'm very impressed. It's a 40 minute drive and I didn't know if I could find a sitter that early, and the receptionist said the kids are welcome to come with me if I don't have a sitter. Yeah!! Finally a doctor who will see me!!!

Congrats Brenda! Let us know what they say!

[BrendaK]

I saw a GREAT doctor today. I was very impressed. And I was surprised that he wants me on a pump right away. Specifically the Animas pump. Since my numbers are so erratic and I need more insulin in the evenings than during the daytime, the pump is the only way I can do that. He wants me on Animas because it can deliver the smallest basal rate. I could have used their loaner pump and walked out with a pump on if I wanted to.

But I wanted to wait -- DH is in the interview process with 2 companies and we may be moving out of state within a couple of months. Right now we have bad insurance, so I want to wait to see if we will move and get better insurance. We will probably have an answer to that side of things by the end of next week if we're moving or not.

In the meantime, I'm starting just 1 unit of lantus tomorrow morning. The goal is to get my fastings under 110 (right now I'm around 150 fasting). Go up 1 unit a day until my fastings are good. BUT, he said I would need to test often and be very careful of lows during the day.

He also did a C-Peptide this morning.

But if we don't move, I'll move ahead with the paperwork to get the Animas. I wasn't expecting to be pumping so soon, but I understand the reasons, and think it's the safest, best way to go.

Thanks for all your concern!!!

[LJS118]

Brenda I'm sooooo happy that you're getting the treatment you need!
Hope all works out and you can get your pump. (at least you know what youre doing w/ a pump)

[BrendaK]

I can't believe how well the lantus is working! I'm up to 7 units/day now of only lantus. And for some remarkable reason, I'm not going high or low at all anymore. My fasting this morning was 122 -- that was with 6 units of lantus, so I increased it 1 more unit today. Before I started the lantus last week, my fastings had jumped way up in the 170's -- it's taken a while to get them down. But the weird thing is -- whatever number I am after dinner or at bedtime, I STAY that way the whole night. So unlike our d-kids!!!

And the other weird thing -- I'm not going low AT ALL. Plus my post-meal numbers are now in the 120's. Before they were in the 200's.

I guess my doctor did know what he was talking about. It still doesn't make sense in my mind, though. I would think that the more I increase my dose, the more I would go low. But actually what's happening is that the tighter and better my numbers have been and no lows at all.

I know that I'll eventually need fast acting. But I'm good now with the 1 shot a day. I don't want to go to a pump right away since this is working for me. I'll see what the doctor says when I go in September.

I wish I could transfer my good and steady numbers to Carson -- what I wouldn't give for him to stay at 120 all night long!!

Oh yes -- we STILL don't know if we're moving or not. That should be decided hopefully this week...

Almost forgot -- I was very surprised that the BD Mini's HURT much more than the BD Short's with the Lantus Solostar pen -- you would think it would be the other way around...

[NickJonaslover8]

Hi, My name is Cayley, and i am a type one diabetic. I have never heard of being a 1.5 diabetic. If you could pm me I would love to talk about it with you.
NickJonaslover8

[Mama Belle]

Brenda,

Don't know how I missed your update the other day. I really need to check this forum more often.

I am so happy that the Lantus is working so well for you!!! I hope you continue to see such great results! Keep us posted on how things progress. :D

[LJS118]

Brenda,
How are you doing? Its been a while since your last post.
Hope all is well.
Lori

[BrendaK]

Hi Lori,
I'm doing pretty well, I think. I've been on 9 units/Lantus a day now and my fastings are finally down to the 110 range (which was the endo's goal for me). And generally my postprandials aren't over 160. I go back to the endo next week and I'm curious to see what he'll say. If I eat a lot of carbs in the evening, I'll still go high before bed, so I don't know if he'll want me on fast acting or not. Or maybe he'll just say don't eat a lot of carbs -- by a lot I mean over 45grams or so at a meal. My C-Peptide said I'm still making some of my own insulin, so it would be really hard and unpredictable to go on fast acting at this point. I'd just rather eat lower carbs in the evening.

But we just have a ton of stuff going on at home right now. DH has been interviewing for this job in the Chicago area for a while now. He's had 5 interviews, and they've already told him when they want him to start and sent him the employee handbook -- but he hasn't had the official offer yet. It's driving me CRAZY!!! They want him to come in this week to do a preemployment drug screening and meet w/the manager from NYC. So I think they'll make the offer then. I'm sure we'll hear tomorrow more info.

And Carson's starting 1st grade tomorrow -- our first year dealing with school for a full day. And oh yeah -- in another post I shared how Carson has to do a 24 hour urine test because his wasn't normal at his last checkup.

And almost forgot, DH has found out he is extremely deficient in iron (ferratin specifically), which is why his restless leg syndrome is so bad and he's so tired. So that's another whole issues to worry about. (Don't get me started about lack of sleep. Combine DH with SEVERE RLS and blood sugar checks at night and that just a horrible mix.)

Okay, this is turning into a long post/blog....Thanks so much for asking how I'm doing :cwds: I've got to go get bookbags and snacks ready for the first day tomorrow!!

[mbzoltan]

I am so sorry.