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Possibly Type 1.5? Or am I being paranoid?

curiouser

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I was recently diagnosed with Addison's disease - my adrenals have failed. Treatment is 'just' replacement steroids for life.

Around 50% of people with addison's also have diabetes - half Type 1 (or 1.5) and half Type 2. In a cortisol crisis your BG plummets, and I had a few up and down readings in hospital, so I've been using a BG meter to track hypos to help me get my steroid replacement dose correct.

What I've discovered is that I also have dramatic hypers. So far my record is 22 (white rice in a japanese restaurant). I regularly get post-meal levels in the teens. I am not a big eater and I don't have a sweet tooth, and I'm on a low carb diet, so I'm never eating large quantities of anything particularly high carb. A couple of small roast spuds in an otherwise carb-free meal is enough to send me to 12 or 13.

I did a home glucose tolerance test last weekend (410ml of lucozade original) - peaked at 14 after 1 hour, and at 2 and 3 hours was still at 9. Then I did a minimal amount of housework and plummeted rapidly to 3.5. I have needles and have learned IV access as part of my addision's crisis management, so I've confirmed that my finger-prick levels and venous levels are consistent enough. I always repeat test a level that is unusually high, so I'm confident that the high readings I get aren't just errors.

My GP says my GTT shows that clearly I'm glucose intolerant, and probably diabetic. The complication in confirming that diagnosis is that I'm on steroids, and other asthma meds, that can cause hyperglycaemia, so it's hard to know whether it's 'me' or the meds causing the problem.

I have temporarily dropped those meds that I can, so I'm now only on the minimum maintenance dose of steroid that I need to keep me alive - my BP is on the low side so that confirms that I'm not over-steroided right now, and shouldn't be contributing to hyperglycaemia.

I'm going to repeat the OGTT tomorrow now that I'm on minimal meds, but in making sure that I've eaten 150g of carbs per day for the last 3 days I've regularly had readings of over 11, more than 2 hours post-meal.

My fasting glucose is around 5.8 in the morning, and as I also regularly have hypos I don't think my HbA1C would be high.

My Dad has your classic Type 2 - tipped over to diagnosis at around 60 after 30 years of being seriously overweight. My sister has insulin resistance and is on metformin since her mid 20s, but she has all the classic metabolic syndrome features. On the other hand my BMI has never been over 18.5, it's currently about 17. I'm 37, never been overweight, never overeaten (ever) though I was a big drinker in my 20s (now abstinent for 8 years).

I have severe polyuria and polydipsia - that's actually how my addisons got picked up, as they were testing for diabetes insipidus. On those occasions I didn't have sugar in my urine, but it hasn't been tested while my BG was high.

Assuming my OGTT this weekend is also spiking over 11 and then coming into the 'pre-diabetes' range, what should I do next?

My concern is that if I am early 1.5 (given that I have multiple auto-immune problems this seems at least as likely as Type 2), I'd like to get on supportive treatment asap so that I can put off my insulin production failing completely for as long as possible.

Any time my sugar is over 11 I jump on the treadmill to get it down as fast as possible, but of course also when it suddenly swings from 10 to 3.5 I feel like a rageful toddler!

I have a great, engaged, young, interested GP, but I have so much going on with the Addison's as well that this keeps getting pushed to the bottom of the list. (I'm currently on weekly GP appointments because we have so much to sort out).

My questions are:

1) Does it matter? Am I being daft in thinking that it's not ok to just ignore these kinds of hypers?

2) What else can I test myself? Is it worth buying urine-ketone test strips to use when my BG is up in the teens?

3) How significant are spikes at 1-hour post-meal? If I'm coming back down to 10 or less within 2 hours, does it matter if after an hour it's 14?

4) Can I get the auto-immune / c-peptide tests via my GP or do I definitely have to be referred? I'm already under multiple specialists and can't face the thought of another...

Thanks for any perspective or advice,

Cx
 
No you are not being paranoid!

I am also on the underweight side with a few autoimmune conditions and diabetes in the family but usually doctors don't bother check unless you are overweight AND over 40. T1s have to wait until they go into DKA, young, slim T2s wait until complications and T1.5s almost never get diagnosed unless they do some detective work!

Well done for being proactive and it's good your doctor is listening. Your medication could indeed be playing into it but you have many other risk factors.

We need a sub forum for those waiting for diagnosis lol. Lost unclassified people..

It's good that you can get the numbers down with exercise as some of us fund they go up >_<

Keep at it with your trial whilst off the medication and keep recording results and patterns. Like you my BG can swing from the high and low end without being on insulin on Metformin though this is considered weird. (I've read between just plain 'Low' and 19.4)

Hopefully everything will become clear with more results and perhaps your doctor could run antibody tests to properly determine what kind of diabetes you have and how best to treat it? You're being really proactive yoursel but even if it is just the mess probably best to avoid your kind of numbers

Wish you all the best xxxxx <3


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Thanks for the reply LittleWolf. I like the idea of a subforum for the as-yet-unclassified folk still wandering in the wilderness.

So, I ran my GTT off the asthma meds, and just about scraped a pass.

Unfortunately my lungs objected so I'm back on the drugs - with consequent return to the same highish levels as before.

And just as I was thinking that at least I had proved that it was the drugs and not my pancreas, someone pointed out to me that as I'd stopped my steroids, I'd be low on cortisol so I should have been hypo at least at the start and end of the test.

So I feel a bit like I'm none the wiser, really. I guess I need to ask about autoimmune testing and so on anyway.

Cx
 
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