Waiting Game

This past April I went to visit a GP for a routine physical, and this is where the drama started.

My thyroid hormone was high, and so was my blood glucose. I went for radio-iodine imaging and was sent to an endocrinologist who told me I have Grave's disease and started me on meds for that.

As my thyroid came under control, my blood glucose remained high, so the endo had more tests taken and about a month ago I was told that I have type 1 diabetes.

I'm still in the Grace period, and now monitoring my blood glucose twice daily (morning fasting, and another random time in the evening). My levels typically vary between 100 and 160 for the fasting read, depending on what I was eating and when the night before (still looking for correlations).

I've basically been left with the instructions that if I have 2 or more fasting reads in a row of 180 or above, I should take 3 units of Levemir and call the endo. I've also been given a very rough guide as to what DKA will present as and told to go to the ER if that happens.

So now I'm just waiting... and waiting... and trying to cut down on my carbs, and learn what effects my FBG... and waiting... It's not been along time, and I know the average Grace period is 3 to 9 months (I'm at 5 months since the first high number at my physical), but really I don't know how long I have.

Mostly I want to know what I should do in the meantime, and if anyone else has been diagnosed like this and how it panned out for them. Anyone have anything to share?

Wow, you did get a "rough guide." If your blood sugar does go high, injecting Levemir will be a slow way of dealing with it. Levemir doesn't even start to act for 1-3 hours and then peaks at 8-10 hours, hardly a prompt way of dealing with high blood sugars.

I find your use of the term "Grace" interesting. We usually use the term "Honeymoon." Grace implies a period of time before penalties start to apply. Seems to me, you already got the penalty. I mean jeez. Diabetes and now Graves. I'd actually encourage you to think about your time now as a honeymoon. Like many of us, diabetes is a little like marriage, a constant partner, having ups and downs. But in the beginning, the honeyroom, things are easy, new and fresh. You may be sad today, but I think many people in hindsight will look back on their honeymoon wishing a bit for the good old days.

Now a piece of serious advice. A honeymoon can last for a decade or more. There are members here who can attest to that. Some of how your diabetes will play out is not under your control, but one key aspect is, your blood sugar control. There is lots of evidence that high blood sugars harm your pancreas (glucotoxicity). If you let your blood sugars run high, you can hasten the end of your honeymoon. And more importantly, almost nobody totally loses all their beta cells, a recent Joslin study of T1 diabetics who have had the condition for 50 years found most of them still producing "some" insulin. So think about avoiding high blood sugars. Some people think that readings over 140 mg/dl are the threshold. I don't know, but do consider talking to your doctor about moving early and aggressively to an intensive insulin regime as that may really help you extend your honeymoon and lead to better outcomes.

Hey Brian, I think I again failed to explain myself well. What the endo is doing with the Levemir is not a reaction to a BG spike and an attempt to get it back down fast, but an introduction of a basal amount as my FBG rises. I'm not on any insulin yet, so I'm monitoring my FBG to see when I'll need to start. I think he'll want a better idea of how much insulin I'll need before I start with the Novalog.

As far as starting insulin right away... Hmm. I hadn't really thought of that. Have you references for the research? Scholarly articles are fine, while my PhD is in microbiology, I'm pretty sure I can muddle my way through endocrinology. Actually, the primary references are preferable, if you have them (too much spin in press!) At the moment I'm respecting what the endo thinks is ideal. I just saw him the other day and he liked my A1C, and prefers to wait and hope that my BG stays where it is. I'm rather hoping to be one of the multi-year honeymooners.

I hadn't thought of the term "grace" versus "honeymoon" before. I heard it both ways and I just sort of gravitated to "grace". Saying "honeymoon" in relation to developing diabetes makes me think of a grim attitude towards marriage... the honeymoon is the fun part, but after that it becomes work and constant compromise 'til death do you part! The funny thing with the Graves', that diagnosis came first and just last night I was talking about how it now seems easy in comparison. Really, I've was asymptomatic for Graves' (although I've a few complaints about the treatment!), so the whole thyroid issue just feels academic. Way easier to deal with then my asthma.