Wrong Diagnosis? No one knows!

It’s Newly Diagnosed Week at Diabetes Daily. Welcome to the crazy world of D. Other bloggers are giving some sage advice. I’m just thinking history.

I’m trying hard to remember. What I remember and how it really was, I’m sure are two different things. Such is my recall about details I’ve barely thought about all these years. I don’t remember specific dates, just the year.

It was 31 years ago, in 1978, that I went to the doctor with some strange symptoms – unquenchable thirst, head-dropping tiredness, constantly and urgently full bladder. I was bundled off to see an endocrinologist. At that stage, my family doctor hadn’t run any tests or told me what he suspected. I suspected enough for both of us but was hoping it was some strange virus.

The endo was a lovely old professor at one of our local hospitals in Sydney. How kind and caring he was! I can’t recall exactly how it went or what tests were run, but I know he told me I had “mature age onset diabetes” and how unusual it was at 25. He couldn’t explain why. I was a little overweight,  having gained a few pounds in the preceding 2 years, but I was by no means obese.

The day wasn’t memorable, my age was.

Why did I get this ‘mature age’ thing at 25? No one knows.

It scared me silly. I’m not sure I was that compliant about anything in my life until that diagnosis.

I was taught to count calories, to weigh everything and was given a diet that seemed to limit carbs. No sugar or sweet drinks. No sweet anything. No potatoes, rice, pasta, limit the fruit and so on. Really, it was a great lower-carb diet, but it was never called that. And I stuck to it. Those tiny portions, just enough for a two-year-old. In 3 months I lost so much weight that I ended up skinny! I don’t think I’ve tasted a soda with sugar since and I never again was that skinny. It made the diabetes go away.

I stayed somewhat careful of my diet for a while – a few years. I even worked in a chocolate factory for 2 years and never touched a crumb! I have no idea how I did that – I’m a certified chocoholic!

Miraculously the diabetes was kept under control – no medication, no insulin, just diet. In those days, there were no blood glucose meters, so the odd test with a urine stick was all I had, plus a fasting blood test from time to time. I was told I didn’t have diabetes. Carry on as normal. Eventually, I got lax with diet and mostly ate whatever I wanted. Rice, potatoes and everything carb was back on the menu. Why the diabetes didn’t return during that time, I’ll never know. It might have, but my testing and doctor follow up was pretty much non-existent, and so were symptoms.

I knew diabetes could rear its ugly head again anytime. When I fell pregnant 10 years later, I wondered when it would hit. I was a very normal weight and at around 18 weeks, having gained very little weight, I was loaned a meter, put on insulin and told that after pregnancy it would disappear again. Most women get it in the third trimester. Why did I get gestational diabetes at 18 weeks? No one knows.

I came out of hospital 2 lbs below my pre-pregnancy weight, with an unexpectedly small baby. My BGL control had been pretty awful. I was very insulin sensitive and I remember having many hypos with only a half to two units of insulin and also having what today would be considered unacceptably high BGLs at times. Why didn’t I have a large baby? No one knows.

My syringes thrown in the bin, I was off the insulin and supposedly ok. Unfortunately, at that time I was diagnosed with lupus, an autoimmune disease. Getting my head around that pretty much put everything else in the background.

Over the next year or two, I had a couple of fasting blood glucose tests. Results always came back ok, or just a little higher that normal. Nothing to worry about, I was told, but as time went on, I didn’t agree. I felt something was wrong on top of everything else that was wrong. In hindsight, could fasting too long before a blood test – 14-16 hours – have given me ok BGL results? No one knows.

I was feeling like I had high BGLs after meals, by which time I was already watching carbs a bit. Eventually I bought a blood glucose meter and tested for a few weeks. On showing the doctor my graphs, he panicked… er… packed me off to an endo. I was angry. It had been way more than a year after my daughter was born and I’d probably been spiking all over the place!

So started the next battle with Type 2 and tablets. They did work, but they all caused horrible side-effects, so most of the time I didn’t take as much as I was supposed to. At that time, I also didn’t care. It was all too hard. The doctor kept giving me new tablets, and I kept having problems with them including hypos and GI problems that the doctor said was IBS. It wasn’t. Inexplicably, I’d gained some weight and couldn’t lose it no matter what I tried. Why? No one knows.

— Confused

BMI around 26 and gaining, my clothing 2 sizes bigger, my BGLs going higher and I was angry.

In 2006 I finally went on insulin, after 2 years of urging by a new endo. I had been needle phobic and I wouldn’t hear of it. I finally relented after HbA1Cs that were truly shameful. I was starting to care again. Diabetes burnout was over.

By then I was in my 50s with nearly 30 years of an on and off diabetes history. I was clearly Type 2, the medications were horrid, and I switched to insulin. Needle phobia gone. I had pens this time. Too easy. From that day, I wanted an insulin pump, but no way to get subsidised supplies in Australia as a Type 2, only as a Type 1.

In January 2009, after asking for a year and being told, “Impossible! You’re definitely a Type 2!”, I was finally sent for some antibody tests. I’d nagged a lot! I wanted to know for sure that I was not eligible for subsidised pump supplies. To everyone’s surprise, including mine, I had highly positive GAD antibodies on 2 tests, 3 months apart and c-peptide almost zero (0.1).

I had LADA – Latent Autoimmune Diabetes of Adulthood.

So that was my second diabetes diagnosis, and in many ways a somewhat more welcome one than the first one because this time, something positive would come of it eventually – an insulin pump. While I don’t remember the date of my original diagnosis, I certainly remember my insulin pump start date earlier this year. Finally something to celebrate!

On the other hand, that diagnosis brought up a bunch of nagging questions.

Is LADA what I’ve had all along? No one knows. Did I first have Type 2 then LADA? No one knows. When did I get LADA? No one knows. Did I get LADA the same time as Lupus? No one knows. Did I have a short or long LADA honeymoon? No one knows. If I’ve always had LADA, then why did it virtually go away for the first 10 years? No one knows.

Does anyone know anything?

Note to self: Stop looking for answers! No one knows!

Reflections on Fasting with Diabetes on Yom Kippur

[This is my first guest blog post for diabetesdaily.com, the post can be found here and is reproduced below.]

Reflections on Fasting with Diabetes on Yom Kippur

Don’t get me wrong, I’m not a stick-in-the mud, but on some forums lately, I’ve seen some downright awful, inappropriate and uneducated advice. Perhaps it was advice given with the best of intentions, it nevertheless prompts me to write about the subject. Some of the info here is going to be obvious to most people, but maybe for some, not necessarily. I’m going to write about medical advice given and taken on the Internet. And finally, some advice about fasting on Yom Kippur.

Internet Advice: Beware!
We all know that we have ever-multiplying resources on the Internet – easy-to-find, immediate information for people who would otherwise not have access to it without the Internet. This includes the giving and taking of certain problem-solving medical advice – from small problems to life-saving ones. We learn, we explore, we take some advice, we dismiss some.

No doubt there’s a lot of rubbish out there to be waded through with an open but somewhat cautious and critical mind. That goes without saying. You come across it on the Internet during almost every possible information gathering mission.

I’ve watched and participated on the Internet since its beginning, in all different areas. This amazing, interesting and often engaging medium with websites, forums, blogs and so much more, in the area of health particularly, has often made me wonder how many have been helped! Too many for me to fathom. Despite all that, I’d like to talk about when that medical advice can be downright dangerous! While the dangers may seem obvious, sometimes being reminded to stop and think, especially for newcomers, can’t be all that bad, can it?

As it says in my blog disclaimer: Any personal information sent to me, will be kept strictly confidential. Please do not ask for medical advice. Only your medical team can see a full picture of your health. I don’t mean to offend, but I can’t, shouldn’t and won’t.

This, in my opinion, is part of responsible blogging and equally applies to participating in forums. The giving and taking of medical advice comes with a fine line that some people cross and don’t know they’re doing it.

I participate in blogs and forums as a patient. If someone has a problem I can identify with or know about, if I’m confident, I suggest reasons or solutions they may not have thought about. It’s entirely their choice what to do with the info. But I can’t always assume they’ll make the right decision, for them, and I hope I’ve communicated it properly too, but maybe I haven’t.

What We Don’t Know Can Hurt Them
I would almost never say, “you should”, and add some medical advice that I’m very enthusiastic about because it worked for me, or insist they take advice that a doctor should be giving. At least I’m aware that I shouldn’t, and I try not to. Unfortunately, I see this kind of advice all the time. While I assume everyone knows how to weed out the good from the bad, a small group of people still insist on giving advice in the most inappropriate way, often unknowingly.

If it sounds like I’m some kind of authority, I’m not, and don’t mean to lecture. I’m just giving a heads-up to those who haven’t thought about it in a while. It’s a subject that comes up often amongst my group of friends.

For example: diet advice. There’s lots of evidence out there that lowering carbs makes it easier to manage diabetes, especially if you’re having a problem. It works – both scientific and anecdotal evidence – so I don’t have much hesitation in suggesting it. No big deal, right? It’s just food. Yet, even diet changes sometimes need to be run past a doctor. Do I know that recommending what is usually a higher protein diet may be harmful for someone with kidney disease? Of course! Even recommending something so simple as eating different foods, comes with a lot of conditions and responsibilities. Many of us deal with much more serious and potentially hazardous advice.

If someone asks me what to change their insulin basals or boluses to, or what medication to take, I run for the hills. That kind of advice is definitely unqualified, inappropriate, and could be dangerous for the person adopting it. I can only hope that I responsibly relate what I’ve done and what has worked for me, and even then, it’s sometimes not appropriate to say anything at all.

Doctors giving advice on the Internet often have no real picture of the person’s full medical condition! Yes, of course, it depends on what kind of advice, but most doctors know what advice they can give and what they can’t, and will say so (unless maybe their egos get in the way). This is the line that patients sometimes unknowingly cross – the one that the doctors wouldn’t.

I’m neither saying that information given by patients isn’t knowledgeable (it very often is), nor that it’s right or wrong, but there are inherent dangers in giving certain medical advice to someone you don’t know. And there are also dangers in taking advice from others who don’t know you or your medical situation.

The onus is always on me, you, anyone to manage information responsibly – given or taken. That includes knowing when to adopt advice, and knowing when it needs to be checked with a medical team. That line will be different for everyone. It’s easy to cross that line in both giving and taking advice.

Unless I’m confident about the writer and about my ability to state the problem with all the background, and then correctly interpret information in the reply, I try to proceed with caution. Doesn’t always happen – enthusiasm often gets in the way.

Yom Kippur: Fasting With Diabetes
So that brings me to the issue of fasting on Yom Kippur, the Jewish day of atonement. It’s an arduous sunset to sunset fast with no food or water. In 2009, it starts this Sunday evening.

I thought about doing a blog post on fasting for Yom Kippur with diabetes, but hastily changed my mind. Then I thought about why not. Hence this post.

Any recommendations for altering medications during a fast, would be so individual that it would take a volume or two for a doctor or diabetes educator to give the kind of advice that would cover all people with all diabetes situations!

I thought about relating my own experience of Yom Kippur fasting and what I did with medications, but I doubt that would be helpful for anyone because everyone’s situation is different. How someone will react to something I’d do, could be different and maybe detrimental.

In no way would I want to give any medical advice on a fasting issue. I’m neither qualified, nor would I want to cause any harm. Too many scenarios as well. Here we go: Type 2s on diet only, Type 2’s on medication – both insulin promoting and insulin sensitivity enhancing – separately or both, Type 2s on insulin basals only, Type 2s on full insulin regime, Type 1s & 2s on injections, Type 1s & 2s on insulin pumps; Type 1s & 2s on a fixed insulin regime… and so on. I’m sure I’ve left out quite a few more scenarios. I think it’s minefield that few people should be stepping into as far as advice goes. I hope you agree.

Here’s some more interesting information about fasting on Yom Kippur that I am in no way promoting, endorsing or otherwise. Let that be the responsibility of the writer.

In the case of fasting on Yom Kippur, despite my warnings above, I would like to give you some “you should” advice!

If you want to fast, and your medical situation or treatment has changed since the last time you fasted, you should go to your Rabbi and your medical team. They should be the only ones deciding if you can fast or not, and if you can, how to do it.

Photo by Trodel (http://www.flickr.com/photos/trodel/ / CC BY-SA 2.0)

Lows For Days

A while ago I wrote about how I was battling with unexplained highs. Now I have the opposite problem. Lows for several days now, even on a reduced basal.

In the last 24 hours, a 70% reduced basal overnight (by that time, I’d given up and just wanted some sleep), still only put me a mmol/l over normal by this morning, and that was after not bolusing for dinner (around 30 carbs) and several snacks after. By dinner, I was on a 50% reduced basal and I did a half-strength correction at 10:30pm. By 3am I was having yet another hypo.

I’m pretty much hypo unaware these days, so I’m on hourly BGL checking.

My diabetes educator and I have had several conversations over the last few days, and we can’t come up with anything obvious to explain it. Now it’s more conjecture than anything else, unless we want to run a bunch of unnecessary blood tests, and even then there might be nothing obvious to explain it. No point really unless it doesn’t resolve.

The situation seems to be slowly improving as the day wears on, but it’s as tedious to deal with these unexplained lows as it is to deal with days of unexplained highs. It is, however, a fact of life for people with diabetes!

Healthy Diet Too Expensive

From The Age story, Healthy Diet Too Expensive

Eating a Mediterranean diet rich in fish, olive oil, legumes, fruit and vegetables may strengthen the heart but the cost strains the wallet and may deter healthy eating, according to Spanish researchers.

They’re not kidding! While a healthy Mediterranean diet has more carbs than a low-carb diet, try doing low-carb on a tight budget!

Don’t you love how doctors with six-figure incomes can sit there and pontificate about what we should and should not be eating. They haven’t a clue or any advice about how some people are going to afford to do so.

Consider a loaf of bread, often the whiter the cheaper, at say $2.50. Add to that some cheap toppings. The bread and the toppings most likely can last several days for lunches. So say $7 for all that. I’m dealing in Australian dollars, but would equally apply anywhere.

Consider a large bowl of salad. The lettuce alone would be $2-$3. The whole salad could easily cost $15-$20. Lettuce, tomatoes, cucumber, avocado, parsley, witlof, bell peppers, pea sprouts and more. No root vegetables. Or I could make a high-carb potato salad for a few dollars.

Add to that meat, chicken or fish, and you’ve got a very expensive meal. Multiply that for other meals in a week and you’ve got a healthy diet that is definitely too expensive.

If you’re on a pension or are a low-wage earner, trying to feed a family, it’s totally impossible.

Instead, it’s fine for governments and medical insurers to fork out millions in trying to fix the problem instead of being proactive and preventing it in the first place. Not sure what the answer is, but food production somehow needs to be subsidised. It’s getting far too expensive to eat well.

Rosh Hashanah Dinner – The Aftermath

As I’ve mentioned in other posts, my BGL tends to go high during exercise, and then I often have to deal with several lows some 4-6 hours later and beyond.

Today (actually it’s 3:00am the next day) I was out at a venue, cooking for Rosh Hashanah (Jewish New Year).. and eating. What’s that Jewish credo? We fought, we won, we ate. But on Rosh Hashanah, we pass commiserating over 1 & 2 in our history, and go straight to eating.

Managing diabetes can be a minefield at the best of times.

Today, I had activity on top of yesterday’s activity (cooking and prepping), and (between serving & clearing) eating an evening meal of several courses that promised to be a carb-fest of the worst kind! I blogged yesterday about how much restraint I might show. All that went to hell in a hand-basket!

Despite all that, I seem to have managed ok-ish, but could have done a whole lot better.

I got to the warehouse around 3pm and we started work in earnest around 4pm. I couldn’t have anticipated that timing as I left home and thought to increase my basal. Glad I didn’t because we sat around for more than an hour shooting the breeze before we headed for the kitchen. I would have headed low before we started.

I had some highs during the afternoon and evening (under 9mmol/L (160mg/dl), though), but fought the urge to treat them fully. Every time I BGL-tested, I got freaked out by the higher numbers, but I knew if I treated more than I did (1 small correction at 5pm), I’d get into trouble later.

At 7:15pm I bolused for food at 1/3 of pump-suggested dose for the big fat carb-lie I told it (brave, eh?).

On a combo over 2 hours, I’d told the pump only about 1/3 the carbs I really had!!! Tell it 1/3 and bolus 1/3 – interesting formula? And then had square of banana cake and pretended I didn’t have diabetes at all!

I had apple dipped in honey, at least 4 half-slices of semi-sweet bread (Challah), sweet fish (Gefilte Fish), a stew that was loaded with rice and potatoes, salad with a dressing I made (that had tons of honey-mustard in it)… and some other salads. All that, along with tasting from 4pm, and boy did I taste a lot of dishes,.. adjusting seasoning and tasting again. Yummmm!

Seriously, I can’t tell you all the stuff I ate that was loaded with carbs! While I didn’t have huge portions, it all added up, and kept on adding up.

Only the coleslaw (S&W Mayo) and beetroot salad (lemon/oil) were without added sugar or honey. It was like one big hypo-food fest! I think I told the pump 30grams of carbs and I’m sure I had at least 100+grams and more!

On the other hand, I had been standing and walking around the kitchen so long, I was in pain, which usually raises my BGL (I have lupus arthritis in all the wong places for being on my feet). A few hastily-bought (today) supermarket painkillers at various times really helped. After that I could hardly feel my aching feet, legs and back.

Right now, I can barely move! All pain meds have definitely worn off!!

Last thing I ate was around 8:30pm – 6 hours ago.

Highest BGL was a 9.9 mmol/L (178mg/dl) at 8:41pm, just after we’d finished eating, and while that number is high, I kept fighting the urge to treat.

I’ve been on a 40% reduced basal for about 4.5 hours, and at midnight started to head down… 9 (162) then 8 (144) and I’m now 7 mmol/L (126mg/dl).

Talk about exhausted! I fell asleep (sitting on the sofa) around 9:30 when we got home and woke around midnight. My BGL could have gone higher during that time, but I’ll never know. I doubt it though. Without treatment before or during those 2.5 hours I slept, it would probably have stayed high for when I woke.

The last insulin I bolused was that combo at 7:15pm with 4.30 units. Before that was 0.7u around 5pm.

I’ve dropped 2mmol/L (32mg/dl) in just over 2 hours since midnight with 40% less basal started at 9:15pm and no bolus.

It’s only 3am now (yes, this night owl should be sleeping) and I assume I’ll come down further by 4am. Who knows where I’d be if I fully treated every time I tested? Probably in the hospital by now!

How could I have avoided those early highs and not had hypos later? Maybe I should have corrected more early on, or increased the basal for 4pm, but I also didn’t know how much I had to do and when I could rest.

Not so easy.

Difficult to know what to do when you don’t know what you’re going to be doing 1-2 hours later, when the insulin has its peak effect!

Early in the evening, every time I thought to do an increased basal, or a correction, I simply couldn’t estimate at what time my body would start doing its usual post-activity BGL drop, or indeed when that activity would end – and that was on top of yesterday’s activity and hypo some 6 hours after.

So, I just didn’t do much correction all day or evening, and the one time I did, it was at half the pump-suggested dose.

Most of the time, I totally ignored the pump-suggested corrections when I entered my BGLs.

You’d think I’d run a marathon the way I’m carrying on, when in reality what I did was a little like working in a slow-paced restauant kitchen for one 5 hour shift! Nothing like my usual chained-to-the-desk work though.

I know I’m steady at 7 mmol/L (126mg/dl) now, a little higher than usual for this time of night, but I suspect a small, long-acting carb might still be necessary. Will assess in an hour, if I can stay awake.

I don’t want to reduce the -40% basal any further at this point, but I’d set it to 9 hours and I have 4.5 hours to go. Will see how I am before sleep, and readjust then, at least to beyond when I’ll wake up, just to be safe. I’ll deal with whatever in the morning.

And I get to repeat all this for lunch tomorrow? Maybe not! No idea how I’ll drag myself out there again by 10am!

I definitely have a much better picture of what happens with increased activity over several hours, over two days… FOR ME – and I can’t emphasise this enough. Someone else’s blood glucose reaction to the same experience, might be vastly different. So many people go low during increased activity or exercise.

Having only been on an insulin pump since June 1st, relatively speaking, I’m still pretty much a novice. Maybe it gets easier as time goes by and experience grows.

The management of diabetes during (for me) unusual and rare prolonged activity is certainly a minefield. I learned lessons tonight and for me, that was as important as not getting enormous and immediately dangerous spikes during the process, or having equally worrying hypos afterwards. The middle-ground, erring on the side of caution, is surely better than possible extremes.