Ship of Fools: Diabetes, Revisited

Thread: Diabetes, Revisited Board: Oblivion / Ship of Fools.

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Posted by Paddy O'Furniture (# 12953) on :

Hi, all. I was hoping to spur a new discussion about diabetes since I have "fallen off the wagon" as of late and am getting back to the serious business of taking care of myself. I just visited my new endocrinologist last Thursday and sort of lied to him about how my blood sugar numbers have been. They're not horrible but they could be a lot better. My last A1C (February 2011) was 5.4 but my overeating is still a problem. The endo suggested I go on Byetta, a.k.a. "Lizard Spit" and said that I would lose a lot of weight and it would suppress my appetite so I could live without constantly craving food.

Any Ship mates using Byetta? I'm still rather needle phobic and want to know if injecting it hurts?

Posted by Sober Preacher's Kid (# 12699) on :

Your A1C was 5.4 and your readings were off? [Confused]

I'm Type 1, so frankly I'm far more variable.

Though I suck back insulin in the morning and hardly need a whiff of it in the afternoon. Crazy body.

Posted by Zappa (# 8433) on :

Hosting

Hopefully an unnecessary reminder, but please note there must be NO giving or taking of medical advice on a thread like this. I shall consult with my heavenly and saintly colleagues to see where best a Diabetes Support type thread belongs, but suspect it may be in All Saints ...

Zappa
Heavenly Host

Posted by Paddy O'Furniture (# 12953) on :

Sorry, Zappa. Do what you must. I hope you don't kill this thread entirely, though.

Posted by PeteC (# 10422) on :

It wouldn't be killed; it would just be moved.

Posted by PeteC (# 10422) on :

And I'd kill for 5.4. That's high-end normal (i.e. watch it!)

Posted by Paddy O'Furniture (# 12953) on :

Well, yeah, my A1C is great and the 500 mg of Metformin is keeping my blood glucose fairly normal but I'm still fat to the tune of 100+ pounds and my endocrinologist suggested Byetta. He says it curbs your appetite and just helps you lose weight quickly. But it's an injectable medicine, so I'd have to revisit my fear of needles and the side effects of Byetta can be pretty bad, from what I've read.

Posted by Paddy O'Furniture (# 12953) on :

Okay, so in order not to violate any more Ship commandments, I'll just ask: Does anyone inject diabetes meds and if so, did it hurt like hell when you started? I've heard it hurts less than pricking your finger to test your blood sugar but I don't test on my finger, I test on my arm. And it only hurts on my arm when I can't get any blood and I have to repeatedly lance it or when I hit a nerve.

Needles, needles, needles, I hate 'em!

Posted by Evangeline (# 7002) on :

Hi Paddy'O.

Like SPK, I'm a type 1 and would "kill" for an a1c of 5.4 without hypoing severely 5 times a day. My sugars have been baad lately-I expect an a1c of about 9-ooops I've managed to keep around 7 for years now but have falled off the wagon of late-not really doing much differently but just having more highs.....oh well back tot he question.

I've not heard of Birretta. I of course inject insulin (well I'm on a pump now but was on multiple daily injections for about 30 years before the pump)-insulin's not painful and it's a small needle just under the skin, although sometimes you get an "ouchy" spot. My motto is if it works do it-so if this new med is going to work, then I wouldn't let a needle prevent me from giving it a go.

Posted by Firenze (# 619) on :

Wafting Saintwards.

Firenze
Heaven Host

Posted by Zappa (# 8433) on :

quote:
Originally posted by Paddy O'Furniture:
Sorry, Zappa. Do what you must. I hope you don't kill this thread entirely, though.

Who? Me? I'm Mr Nice Guy. [Axe murder]

(self-love, since no-one else was offering)

Go well: I have many diabetic friends, and know something of their battles.

Posted by Darllenwr (# 14520) on :

You probably won't thank me for this thought, but if patterns of treatment on your side of the pond are in any way similar to ours, you may well have to come to terms with needles in due course.

I am taking it as read that you are type 2 on tablet treatment. I have a number of friends who were in that position, but who are now injecting insulin. The logic of this move was that they achieved better sugar control by injection than they could with tablets. One, in particular, has stated that he wishes he had gone to injection years ago - he feels better in himself now that he is injecting that he had for a very long time.

Speaking for myself, when I was newly diagnosed (at age 35), I dreaded the possibility of having to inject - who wants to go sticking needles into themselves? (Barring an out-and-out masochist!). I was allowed to try tablets, subject to review after 3 months. Surprise, surprise, the 3-month review found that I needed to inject.

I found that I rapidly became resigned to injecting. With a very little care (and a sharp needle of the minimum size you can find) it does not hurt at all and, goodness knows, I am pretty pain averse. I find that, when the alternatives are taking a minimum 4 injections a day or having my next overcoat made by a carpenter, I can come to terms with injecting pretty easily. [Big Grin]

Posted by Sober Preacher's Kid (# 12699) on :

I don't remember not being diabetic, I've had it since the age of two. So Paddy's question is quite beyond me.

I do get grumpy at injecting needles every once in a while, but getting angry it like howling at the moon, it doesn't do anything and I still have to take needles.

Posted by Lothlorien (# 4927) on :

I've just heard that ex-MIL has gangrene in two toes. She's Type II but has never been reliable in diet or medication. She's now in a nursing home so is tested regularly and injected regularly. However she's been refusing to eat much. It was also discovered that she was browbeating maids into giving her morning and afternoon tea sweet goodies and hiding them away. She had her own stuff she was supposed to eat. Her long term tests show levels are far too high and erratic as well.

Many years ago, her brother with same stupid attitudes to exercise and diet died in an operation to amputate gangrenous leg. MIL is now 90 and somewhat demented, but gangrene is still an awful thought.

So, please take care of yourselves.

Posted by Paddy O'Furniture (# 12953) on :

quote:
Originally posted by Darllenwr:
You probably won't thank me for this thought, but if patterns of treatment on your side of the pond are in any way similar to ours, you may well have to come to terms with needles in due course.

I am taking it as read that you are type 2 on tablet treatment. I have a number of friends who were in that position, but who are now injecting insulin. The logic of this move was that they achieved better sugar control by injection than they could with tablets. One, in particular, has stated that he wishes he had gone to injection years ago - he feels better in himself now that he is injecting that he had for a very long time.

Speaking for myself, when I was newly diagnosed (at age 35), I dreaded the possibility of having to inject - who wants to go sticking needles into themselves? (Barring an out-and-out masochist!). I was allowed to try tablets, subject to review after 3 months. Surprise, surprise, the 3-month review found that I needed to inject.

I found that I rapidly became resigned to injecting. With a very little care (and a sharp needle of the minimum size you can find) it does not hurt at all and, goodness knows, I am pretty pain averse. I find that, when the alternatives are taking a minimum 4 injections a day or having my next overcoat made by a carpenter, I can come to terms with injecting pretty easily.

Well, my last A1C was a very good 5.4 but sometimes in my day-to-day living I don't take care of myself as well as I should. I don't test as much as I should either because my doctor only signed off on me being able to test 3 times a day and I would like to do at least 4. From reading posts on the American Diabetes Association website, it seems that Type 2's can expect to wind up having to inject Byetta or some similar drug even if their blood sugar is under control. And injecting medication is far better than losing one's legs, eyesight, other limbs... LIFE!

I saw an ad for BD brand needles--and the new BD "Ultra-Fine Nano" which is a mere 4mm compared to the original 12.7mm. So, I could handle that, I'm guessing.

Posted by Janine (# 3337) on :

My doctor is happy I've gone from 6.4 to 6.2 in my A1C. 5.4 is, like, a goal for me.

And I'm gonna look up that appetite-suppressing injectable...

Posted by Darllenwr (# 14520) on :

I guess I'm about to be the pork pie at the Bar Mitzvah (or something [Big Grin]

) but the length of needle that you use for your injections depends upon your physique. Being less eliptical, the less fat you carry, the shorter the needle you can use. I'm 5'10" and about 165 pounds (at 50 years of age) and use 6mm (1/4") needles. I doubt that I would be able to use a needle appreciably shorter than that.

The point that is important, from the pain point of view, is not the length but the thickness (diameter) of the needle. The smaller the diameter, the less likelihood of pain. My needles (supplied by Novo Nordisk) are 31 SWG (Standard Wire Gauge) and are about as fine as they come. I used to use 28 SWG needles (when I was first diagnosed) but went to the finer gauges as they became available. Just to be awkward, in SWG (and, I believe, in AWG as well) the higher number denotes the smaller diameter. It is probably something to do with the number per lineal inch.

I went to finer needles with no noticeable effects upon my condition. The amount of force needed to make the injection rose slightly but, other than that, the only significant effect was that injections hurt less. I have now reached the point (with 16 years practice) that I seldom even feel the injection at all. It could be a whole lot worse ...

Posted by Mr. Spouse (# 3353) on :

quote:
I saw an ad for BD brand needles--and the new BD "Ultra-Fine Nano" which is a mere 4mm compared to the original 12.7mm. So, I could handle that, I'm guessing.

There is a good visual guide
here on recommended lengths. I have recently switched from 8mm to 10mm needles (29G) after putting on a bit of weight and find them good to use.

Posted by Paddy O'Furniture (# 12953) on :

Darllenwr: Well, for injecting Byetta, which is what I initially made this post about, one has options for where one injects it. I forgot about that until this morning when I read your post. I could inject it in my upper arm as well as my large stomach, so I think I could still use the shorter (lengthwise, not diameter) 4mm needle.

This is all just supposition at this point. I am still attempting to lose the weight by exercising and eating better. I have to give it a bit more time before I give up and try Byetta.

Posted by Paddy O'Furniture (# 12953) on :

quote:
Originally posted by Mr. Spouse:

quote:
I saw an ad for BD brand needles--and the new BD "Ultra-Fine Nano" which is a mere 4mm compared to the original 12.7mm. So, I could handle that, I'm guessing.
There is a good visual guide
here on recommended lengths. I have recently switched from 8mm to 10mm needles (29G) after putting on a bit of weight and find them good to use.

Mr. Spouse: Thank you so much for including that wonderful link! Now I see that the 4mm probably would be too small for me, especially if I injected into my stomach. You've saved me from buying the wrong size needles, if ever I should go that route! [Big Grin]

Posted by Darllenwr (# 14520) on :

Echoing Paddy O'Furniture - thank you Mr Spouse; I inject into the upper thigh and have had a couple of unpleasant experiences when, even using a 6mm needle, I have clearly hit a vein with my Lantus (slow-acting) dose of 24 units. The ensuing half an hour or so was fraught with activity as I fought to stave off coma. I don't recommend blood sugar levels down under 2 mmol/litre - very unhealthy. I noticed at the bottom of the linked page that they recommend that one always inject at an angle when using the thigh - wish I'd known that sooner!

Posted by Gee D (# 13815) on :

This is not any sort of medical advice, but a recounting of experience with needles etc. One of Dlet's mates was diagnosed with diabetes about 3 years ago when they were all 15 or 16. A change of diet, of course, and injections. He somehow managed those for a while, even at school and playing sport, but it became a bit hard on cadet camps. He had a cannula type device installed, and can "inject" quite easily. Matters are well under control.

These are matters which really need discussion with your specialist support - perhaps even a referral to dieticians to help with the sort of diet you need and also with any necessary and lasting weight reduction.

Posted by Taliesin (# 14017) on :

I don't think a pump is an option for type 2 diabetics though.

Isn't the pump a Godsend?? Changed our lives. Both my sons went to scout camp last week and although I got one panicky phone call where they took him to A&E due to blood in the canula and tube (all very thin so a few drops of blood looks like a haemorrhage) everything was calm and under control. Incidently, I told them to bail out of A&E (emergency room?) get back to the campsite and just change the whole set, because the chances of finding someone who knew any more than basics about dibetes in general and pumps in particular were pretty slim.

Posted by Evangeline (# 7002) on :

quote:
He had a cannula type device installed, and can "inject" quite easily. Matters are well under control.

Ah, yes it does look easy and done and dusted from the outside and good on Dlet's friend for making it look so easy. It ain't that easy though. You have to insert the canula via a needle, yourself every 3 days or so, you have to take care of the site and be pretty vigilant in making sure your pump isn't empty, your sites not blocked etc and if you have a problem you need to take immediate action or you end up in DKA. It's a lot of work and you have to do all the thinking for the pump, it's still a pretty primitive device compared to a working pancreas.

That said I Loooove my pump but that's only cos it means I no longer have severe hypos as a result of peaky/unpredicatable long acting insulin and I can sleep in and snack if I want to. You don't get a pump just 'cos it's easier than needles-it's not and it's also about 10 times more expensive than needles. it's worth it when you are a type 1 but most medical experts do not recommend it for type 2s. In fact the Aust govt will only provide funding support for pumps for type 1s who also meet certain other criteria as well, as signed off by their endocrinologists.

Posted by Taliesin (# 14017) on :

... the reasoning here is that although a pump costs more as a piece of equipment, it causes the diabetic to cost less over the years, as levels are managed better and self care is easier.

Unfortunately, a lot of families would apply for and get a pump, then find it was too much hassle (the setting up takes a long time, blood tests every two hours round the clock for the first 2 - 3 weeks) and then a lot of kids find the pump a bulky and annoying thing to have attached 24/7. So they'd go back to injections, but NOT give the pump back. So now the process of getting one has been made more complicated to weed out the uncommitted.

It really did make life easier though (SPK, have you ever considered one?) A few weeks after getting connected, my son went to a birthday party on his own for the first time - just when he was getting to an age when he minded having a parent tag along. He dialed up for every single cake and handful of cheesy things, and came home with a reading that was spot on amazing.

Course, now he's 11 and a bit of a wosit, he occasionally 'forgets' to test or dial up or whatever, and he doesn't exactly enjoy the set changes, and we battle with a higher-than-it-should-be A1C, but the pump itself is great.
He broke the clip on camp last week and I'm not sure how to go about getting a replacement, but it's lasted over a year and the pump itself should do 3, I believe.

[ 02. August 2011, 09:47: Message edited by: Taliesin ]

Posted by Evangeline (# 7002) on :

quote:
He broke the clip on camp last week and I'm not sure how to go about getting a replacement, but it's lasted over a year and the pump itself should do 3, I believe.

I broke the clip on mine-here in Australia I was able to phone the Minimed office and use my credit card and they sent me out a new clip. It cost something crazy for a bit of plastic-$80 or something but what can you do? I suspect that your pump manufacturer would have an office in the UK, you could ring them and I'm sure they'd tell you how to get a replacement clip.

Posted by Sober Preacher's Kid (# 12699) on :

No, I have never given the Pump serious consideration. I have a deep-seated hatred of IV's and medical staff inserting them, same with venous blood tests. So I have never had one, nor do I plan to get one. I admit I am a stick in the mud.

I have lost a considerable amount of weight over the past five years and I'm now around my ideal weight for my height. I'm down to 21 units of Levemir per day which I find varies very proportionally to weight. If you lose a few pounds you'll find yourself having four low reactions per day.

No, this fuddy-duddy likes his needles.

Posted by Darllenwr (# 14520) on :

{Cross-pond confusion} And Levemir is what, exactly? [Confused]

Posted by Sober Preacher's Kid (# 12699) on :

The Novo-Nordisk competitor to Lantus. It's a direct equivalent. I've been a lifelong Novolin user, that being the brand of Connaught Labs, the originators of insulin. Novolin in Canada was sold to Novo-Nordisk.

The main brands here are Eli-Lilly's Humulin line and Novo-Nordisk's Novolin line.

Lantus, a Sanofi-Pasteur brand, is an also-ran.

Posted by Evangeline (# 7002) on :

SPK, medical staff don't have to insert anything when you pump and there's nothing IV about it-the needle goes just under the skin, same as a normal jab, you pull the needle out and leave a little plastic canula.

Levemir and Lantus have slightly different chemical makeups-they're not exactly the same in the way that Humalog and Novorapid are the same thing-but they're both long acting/basal insulins.

Lantus & Levemir What's the difference?

Posted by Sober Preacher's Kid (# 12699) on :

Still, I'm a Novolin user, Novorapid and Levemir. I used Lantus for a while but I wasn't happy with it. Levemir and Lantus are marketed head-to-head. I never got into the details because I was at university when they came out and had my head in other things. Canada was a laggard in approving them for release.

I'm not a fan of anything stuck inside me. I don't want a pump and I'm doing just fine without one.

It would cost me a considerable amount of money since Canada's health system is not what it's cracked up to be, particularly when it comes to drugs and equipment. But my primary objection is I don't want one on lifestyle and personal choice grounds.

Like many youths I fell into a gap when transitioning out of the youth diabetic clinics into the adult stream. My care had a gap. It now has another gap as I don't have an endocrinologist right now.

I'm praying that a job I really, really want and would be very good at (from what I can tell) comes through. If so I would be moving to Ottawa and I would have to get a new family doctor and they would refer me to the Ottawa diabetic clinic. There's only one in the city as far as I can tell due to hospital amalgamations.

Hehe, I already have an idea of the apartment I'd like, the clinic I'd go to for the family doctor and the endocrine clinic they'd refer me to.

Posted by Evangeline (# 7002) on :

Good luck for the job SPK. Yeah my care's had plenty of gaps-including trying to find adult care that is type 1 appropriate as opposed to type 2 focused.

Blah-sounds like Canada and Aust are pretty similar-I went on the pump initially because, for me it was cheaper than Lantus as my private insurance covered the initial cost of the pump but not Lantus and Lantus wasn't approved on the Aust Pharmaceutical benefits scheme-which meant you paid full price as opposed to about 1/10th of the full price of every other insulin cos the govt makes up the difference. Lantus is subsidised now-strangely enough Levemir is only subsidised for type 1s in Australia 'cos that's all that Novo asked for in their application-which I find sort of strange.

Posted by Sober Preacher's Kid (# 12699) on :

Canada relies on employer-provided coverage for drugs. [Mad]

Medicare as we know it was implemented without drug coverage as it was the 1960's and they were trying to be a bit economical. Drugs weren't so expensive then.

Universal drug benefits are considered a provincial matter. Only Quebec has a universal plan for working-age people.

The Province of Ontario recently reviewed its drug plan for senior and poor people. It turns out that pharmacies devote 60% of their volume to provincially-covered patients, yet derive almost 100% of their profits from the remaining 40% of private-pay (emloyer plan or own pocket) patients. [Mad]

The Government of Canada provides money to each province each year to implement a catastrophic drug plan, but fat lot it does. It is insane as my disease does not end when my employment does. It's not the 1950's anymore. But try telling that to Government.

Actually, that's part of the plan. [Devil]

Posted by Darllenwr (# 14520) on :

A curious article appeared in Metro (free newspaper distributed on public transport) this morning, claiming that diabetics using insulin pumps were at risk from computer hackers. The article claimed that insulin pumps use WiFi to connect to the internet, enabling health care professionals to monitor their use. It then went on to claim that the links in question could be hacked, enabling the hacker to kill diabetics.

My immediate reaction was along the lines of, "Yeah, right, pull the other one. Just another silly season scare story, picking up on the current preoccupation with hacking." But, second thoughts raised the question, "Is this possible? Could it be true?"

Anybody any better informed than I am?

Posted by Moo (# 107) on :

I came across this article. The author appears to be well-informed.

Moo

Posted by Evangeline (# 7002) on :

That's a very interesting article. I've always felt uncomfortable about the remote control feature of the pump-I mean do you really need it? The remote control features were banned for some time in Australia because of an issue with frequencies-the problem was other remote control devices interferring with the signal. I was afraid somebody opening their garage door would give me a bolus.

It's a scary thought. I must say it wouldn't be silent though, I always hear the alarms and vibrations my pump gives when it is off, or bolusing or "doing something".

IMO it's easily fixed, just by getting rid of the remote control function on pumps-I've never even used my remote.

Posted by Sober Preacher's Kid (# 12699) on :

There was a Law & Order episode 15 years ago where somebody hacked a diabetic clinic's glucometers to cue an insulin overdose in the patients.

Life imitates Art?

Posted by Taliesin (# 14017) on :

what is this 'root' thing? getting/taking?

apart from that:

Any technology that proposes doing all the thinking for a person is a bad thing, and if sci-fi speculation like this means an extra safety check is left then hurrah.

Certainly, there's no way my son's pump could take any action without his knowledge and consent - it makes suggestions, but have to be confirmed manually, and can be overridden.
When he removes his pump for washing or wet/dirty activities, we let it continue to drip as if still attached - we were advised at the beginning not to 'suspend' the pump unless it's still attached to him, as the alarm that goes off after an hour would advertise the presence of expensive medical kit in a sports locker. We'd suspend the pump if he was hypoing badly, and it would alter him if it was still off an hour later.

So, I think there's minimal danger for diabetics as it stands, since they understand their own condition, but it's a good warning for the people who like to tinker with technology and probably have less understanding.

Posted by Evangeline (# 7002) on :

quote:
it makes suggestions, but have to be confirmed manually, and can be overridden.

The article claims that the hacker-using the remote control function, can from within about half a mile radius, actually turn the pump off and/or deliver boluses etc. So the manual confirmations etc are actually being done by the hacker.

it's all a pretty unlikely scenario but from what this guy is saying it's possible.

Posted by Darllenwr (# 14520) on :

I find that pretty disturbing. OK, so the individual in question is, if you like, a *professional hacker* - it's his job to hack his way into things to determine their vulnerabilities and it was his own insulin pump he hacked into - but it is disturbing that it could be possible (and this could include inadvertantly) to kill a pump-using diabetic remotely by tampering with their pump settings. The joy of killing somebody in this fashion is that it would be the perfect crime - almost impossible to determine who was responsible, if it were even determined how the victim had died. To my mind, it is a great pity that a garbled version of this story appeared in Metro - it will certainly give some people ideas.

As all will have gathered, I don't use a pump and don't anticipate ever doing so, but I am concerned for those who do. I hope that the pump manufacturers have been taking notice ...

Posted by Sober Preacher's Kid (# 12699) on :

About the thing that dare not speak it's name: cure.

I have kept my eye on an interesting line of research out of Harvard which is summarized here.

They have some some excellent research and are now into Phase II trials, the do-or-die phase. Phase II determines if the therapy works and the therapeutic dose.

The real innovation here is in the principles than in the tools. The chief researcher, Dianne Faustmann, attacked Type 1 Diabetes as an autoimmune disease, not as an absence of insulin disease. It turns out the pancreas can recover once you get rid of autoimmunity. She attacked the cause, not the symptom.

Even better, her initial experiment was on natural, true diabetic mice rather than once with removed pancreases. She used a better mouse model.

And on top of that, her therapeutic agent is a drug called BCG, which has been around for decades. It's generic. However this is a completely innovative use and in far larger doses than in normal. To be fair to science, none of this would have been possible without the recent advances in genetics and computers.

To their credit the Faustmann Lab did a Stage I study where you inject a tiny amount of BCG and watch for any ill effect. Since BCG is decades old and well-known no ill effects or unexpected things were observed, but it does make the whole project more credible when it moves on to the Stage II phase where the rubber meets the road.

I'm simply delighted that something has got this far and will be cheap to administer. No expensive patented drugs.

Posted by Darllenwr (# 14520) on :

That's fascinating - maybe there's some hope for we Type 1's yet! I had always assumed that the condition was auto-immune and therefore irreversible, though I cannot remember where I got the idea that it was an auto-immune condition - it may be that my wife's auto-immune condition (MS) set me thinking along those lines. I shall watch the space with interest.

Posted by Sober Preacher's Kid (# 12699) on :

Doctors will frankly tell you Type I Diabetes is an auto-immune disease. But they long thought what was done was done. Faustmann's Lab turned the idea that the damage is permanent on its head and that is their controversial point.

I came across a website which said that Diabetes wasn't treated like other auto-immune diseases. Instead of trying to suppress the immune system and stave off the damage, things were allowed to run their course and then you got a replacement through insulin. It's an atypical therapy actually.

It comes from Banting and Co. groping around in the dark at the University of Toronto in the 1920's. By current standards they really didn't know what they were doing and they were flying by the seat of their pants. It took decades for science, especially genetics and cellular biology to catch up and let us really get a handle on what was actually going on in the pancreas.

Usual warnings about disappointment but they do have an innovative insight, they have used good models and have done everything in full so far as far as testing requirements go. It's clear they did this so that when the make-or-break test comes at the next stage their results are solidly grounded.

The fact that their therapy is based on a generic drug with negligible cost is a bonus, but delightful all the same, if not to you then to the Minister of Health.

Posted by Taliesin (# 14017) on :

Thank you for this. A family at church yesterday were in bits because their 4 year old grandson has just been diagnosed with type 1. They're upset about the needles and the 'no sweets' stuff, but more about the permanence and no hope of a cure. This might be something that lightens their load a bit.

Posted by Sober Preacher's Kid (# 12699) on :

There are the usual warnings about getting one's hopes up. But I'm amazed they have made it this far and are going into the make-or-break phase soon. So it is of interest but don't get too invested emotionally. But if it works then the UK Minister of Health should fall all over himself to dose every Type 1 in England & Wales.

Modern diabetes therapy for Type 1's is more into carbohydrate counting. Really fast insulins like Novo Rapide make this possible, so when the kid grows and can be more self-responsible they can get more freedom. The usual routine though is a healthy diet that everybody, the whole family *should* eat if dietitians had their way.

Scaling insulin off the carb count of food labels is actually pretty accurate. Fast Food restaurants here will actually post the nutritional information for their products on a poster. Add up the carbs, scale the insulin, and my blood sugar has been fine after a McDonald's Double Quarter Pounder with Large Fries. My blood was 5 mmol/L afterward, which meant the insulin worked.

Yes, I ate that heart attack on a bun.

If the dietitian and other medical team is not being so flexible, the family should look into a transfer. Type 1's lumped into clinics geared to Type 2's don't do well, the lifestyles and problems are just too different. They might do better at a clinic that specializes in Type 1's.

I know it's the NHS but there are valid medical reasons for asking, though they might have to go to London, Cardiff or another big medical centre for this.

Posted by Taliesin (# 14017) on :

Thank you, yes, my son has total freedom within sensible, normal-for-everyone limits, and he is on a pump, and carb counts.

Little just diagnosed 4 year old at church is starting on long acting insulin, fights every injection and every blood test and is still having the diabetic team come to adminster insulin.

(I was surprised at this new service - when my son was diagnosed at 4, they just gave us a bag of needles, insulin cartridge, prescription for more of same, and a pen. And a BM kit with a few test strips and a prescription for more of same. And a book of FAQ. Actually, I'm very glad people didn't keep coming round to do it for us - I think people are better left to their own devices to figure out their new kind of normal. But YMMV)

Posted by Sober Preacher's Kid (# 12699) on :

My parents had the same experience with a screaming two-year-old. In Northern New Brunswick. I had the first glucometer on the whole North Shore.

I do Novolin Levemir with Novo Rapide, but to each his own.

The fact of being stuck in a Type II clinic with people unable to follow their diets vs. a more Type 1 clinic where the question is "how to I make this work 'cause I want a life" is a major issue of youth diabetic care.

The fact is insulin gives you more freedom IF you can count carbs and use some sense and moderation.

When I was diagnosed you were handed a diet and told to follow it, the doctors nurses didn't care what your previous diet was and you were told to forget your old routine.

Diabetic care has made quantum jumps in attitude, accommodation and use of dynamic insulin adjustments but you have to be in a clinic that embraces those principles. Type II clinics have different fish to fry.

Posted by Evangeline (# 7002) on :

quote:
Diabetic care has made quantum jumps in attitude, accommodation and use of dynamic insulin adjustments but you have to be in a clinic that embraces those principles. Type II clinics have different fish to fry.

Absolutely! I find it irritating that in Oz and I think other places, there is this talk about helping type 1 young adults transition to "adult care". The problem is that the "adult care" is type 2 centric and completely unhelpful to type 1s [Mad]

They need to improve care for adults with type 1-we are the forgotten ones when we turn 18.

Faustman is quite controversial SPK, although so were Banting and Best. I suspect that if there is a cure or a massively improved treatment for type 1 it will come from somebody out of the mainstream. I don't expect a cure anytime soon (like within 20 years) something would have to be close to a human clinical trial but we're years away from that-but perhaps the 18mo diagnosed tomorrow will be cured before they're 40. I doubt it, but perhaps....

Posted by Darllenwr (# 14520) on :

[Cynicism alert]

Bear in mind that it is very much against the interests of the drug companies that a cure should be found for any chronic condition. Paliatives make for much better sustained profits than do curatives. So, whilst it may well be that the use of the indicated generic can offer a genuine cure for Type 1's, I anticipate that Big Pharma will do their best to suppress this information or to rubbish it - it is very much in their interests that diabetics (of whatever hue) should not be cured of their condition.

Which may very well explain why diabetes is not treated in the same way as other auto-immune conditions - there is good money to be made by life-time treating diabetics ... [Paranoid]

[/Cynicism alert]

Bear in mind that I worked in medical device R&D for 6 years - I know of what I speak.

Posted by Sober Preacher's Kid (# 12699) on :

I know she's controversial. I've been disappointed by research before (the laser-based bloodless glucometer, next best thing for a six year old) so I'm cautiously enthusiastic.

She's using well-studied decades old drugs as the therapeutic agent, she put her therapy through every test demanded including ones that might be dispensed with as extra, and she does have enough money to run a Phase II clinical trial in the next two years. The fact that she isn't inventing a new drug helps stack the deck in her favour.

I will give her the benefit of the doubt and wait for the test results to come in, though I won't hold my breath. The next two years will mean Faustmann is either totally discredited or she gets the Nobel Prize.

Posted by Welease Woderwick (# 10424) on :

HWMBO has recently been found to be diabetic, his mum and brother are, too - do any of you folks know any recipes for good cookies or cakes or similar that we can introduce into our repertoire that will be suitable? If so, can you pop them on the recipe thread in Heaven with a mention here as well?

Thanks.

Posted by Taliesin (# 14017) on :

Is it type 2 diabetes?

If it's type 1, it's my understanding that you're better off eating occasional nice things with ordinary fat and sugar, and taking appropriate insulin. As for anyone, this shouldn't be more days than not.

If type 2, I don't know. My daughter made brownies that used ultra low fat mayonaise instead of butter.

Posted by Gwai (# 11076) on :

WW, I recommend baking with one of the faux sugars. My mom's guy has it, and that's what they do. Some of the fake sugars don't work for baking, so do be sure to check, but they are really decent these days. I personally can't even taste the difference, though my sister can.

Posted by Zacchaeus (# 14454) on :

But don't forget that the flour in cakes and biscuits and any other carbohydrates, when digested are basically sugar too, and have to be taken into account in working out a diabetic person diet. There is no point replacing sugar with other forms of sugar.

Posted by Gwai (# 11076) on :

No point just replacing the sugars. However, a whole wheat thingie might be okay if taken with some protein, etcera--IF it doesn't have sugar in it.

Posted by Zacchaeus (# 14454) on :

Yes, it was a very quick answer before going to bed - just trying to say diabetes is a complicated subject and it is not so simple as merely cutting out sugar..

Posted by Jengie Jon (# 273) on :

Welease Woderwick

I spent sometime on this when my mum was diagnosed as type II diabetic. A friend who was in pancreas research (working on the anti-diabetic condition) suggested than when mum did bake that she used fructose instead of sucrose.

When I get home I will look up the cake I created at the time as a treat. It is ginger and sweet potato cake.

Jengie

Posted by Evangeline (# 7002) on :

quote:
friend who was in pancreas research (working on the anti-diabetic condition) suggested than when mum did bake that she used fructose instead of sucrose.

I strongly suggest that anyone with any type of diabetes have a consult with a dietitian. Food and diabetes is pretty complicated as somebody else has mentioned. In my understanding there's little difference in terms of effect on blood sugar levels between sucrose and fructose-they both cause a quick spike in blood sugar if you've got diabetes. It's carbohydrate of all types that are the issue with diabetes, so potatoes, fruit, honey, glucose, sucrose, lactose, corn syrup, bread etc all need to be counted in a diabetic diet.

The Joslin website is a source of good info, also the ADA if you want to understand more about diabetes.

Posted by blackbeard (# 10848) on :

One very hacked-off Type 2 wussy reporting in.

Recently diagnosed from blood sugar and HbA1c samples when "in" for a potentially more serious condition; they were a bit (not very) high. No other symptoms.
And I am FURIOUS.
Latest bloods were OK (that's with Metformin).
I'm still furious.
And, yes, I know that if one is going to have an incurable condition, Type 2 is a good choice; you can still do anything that's physically possible (happy thought!). And I'm still furious.

quote:
Originally posted by Welease Woderwick:
HWMBO has recently been found to be diabetic, his mum and brother are, too - do any of you folks know any recipes for good cookies or cakes or similar that we can introduce into our repertoire that will be suitable? If so, can you pop them on the recipe thread in Heaven with a mention here as well?

Thanks.

WW, there's a lot more to this than food. Even with type 2 there's a whole heap of bother; food, weight, exercise, drugs, regular blood tests, eye tests, you get to know your GP and the diabetes nurse; but, for my part, I am mostly pissed off by the feeling that my body has failed, let me down, is now imperfect. Illogical, I know, especially as there are so many people with real problems.

Food: so far as I can make out, I can eat anything but I have to watch when and how much. Green and Black's chocolate, OK but I must stop after a few squares, beer OK and red wine good, but again I must know when to stop (one pint or one glass, respectively).

This should apply to cake too. Better a slim slice of something good than several slices of something less tasty.

Meanwhile. Can anyone help me to become a bit less furious, a tad less upset? can someone remind me that I really should be grateful for the mostly good health I've got? and for escaping so lightly from my latest medical misadventure?

And you with proper type 1 diabetes; just tell me to stop bitching.

Blackbeard, wussy

Posted by Welease Woderwick (# 10424) on :

I can fully understand the anger, it seems pretty reasonable to me.

We think there is a diabetic clinic at the local hospital and if not there is bound to be one at one of the others, not too far away. As diet is so very here from typical Western that is going to be our first port of call. He knows he has to reduce rice and has been advised by the GP to increase wholewheat foods and millet - he loves millet based stuff so no problems with that.

It should be an interesting journey.

Posted by PeteC (# 10422) on :

Reduce rice?

Posted by Sober Preacher's Kid (# 12699) on :

As far as I understand, moderation period is better than picking and choosing foods. There is an old understanding that different types of sugar metabolize differently but that has been disproved. It is the total count and the general health of menu that really count, not rice over wheat or whatever.

I imagine a little more walking and a cut in portion size combined with good Indian cooking would be the best way. Don't pick favourites.

blackbeard:

You have my sympathy and I am a genuine Type I. You aren't a wuss at all. I have always though that Type II's have the harder time as you have to break a lifetime of habits. Young people have fewer ingrained habits to break and have parents to lean on them to do so.

Type II's often have more painful struggles of the mind, it seems.

Posted by Zacchaeus (# 14454) on :

Blackbeard - T2 diabetes is 'proper' diabetes, it may not be as dramatic at times and may not have the 'must be dealt with immediatley issues'. But make no mistake it is just as serious a T1, it too has long term effects,it can also cause blindness loss of limbs and kidney problems etc.

I'm T2 and the child of a long term insulin dependant mum. So have spent years with counting carbs and watching diets all around and in some ways mum had it easier, for example she could eat those cakes sometimes and cover it with insulin.

T2 have to watch and consider what they eat without that option - of course in lots of way mum had it much harder. I'm not trying to say one is easlier than the other, just to say that they are both serious even though there are differences.

And any sudden diagnosis is a shock and will bring out lots of feelings incuding anger.

My way of coping was to read up and get informed and take control of this damm condition, this is my body I know it best and I will be I charge, not the diabetes, it will not be doing things inside me that I am not aware of.

Others I know go to the oppoisite extreme - my brother-in-law's way is to say 'doctor knows best I will leave it to the medical proffesion' and eat what I like and just keep taking and increasing the medication that they give me. He refuses to lets the diabetes alter his lifestyle at all.

It is perfectly understandable if you are angry and confused, but only you can decide what ot do with this anger........

Posted by Mr. Spouse (# 3353) on :

quote:
Originally posted by blackbeard:
Meanwhile. Can anyone help me to become a bit less furious, a tad less upset? can someone remind me that I really should be grateful for the mostly good health I've got? and for escaping so lightly from my latest medical misadventure?

What Zacchaeus said. I coped by learning about the condition and deciding that I wanted to be in control of it, not the other way round.

My initial diagnosis was similar to yours - tests for something else discovered higher than normal blood glucose. A shock to the system (literally) but over time, I'm grateful that I have never been really ill solely due to my diabetes. There are times when it's made viruses and the like harder to shake but that's life, etc. I was originally diagnosed Type 2 then they said I was really Type 1 when tables stopped being effective - now there is a suspicion I may have been Type 2 after all; I'm waiting for tests to determine that.

Get yourself a decent blood test meter and stay in control. Ignore the myths about sugar being evil. And find people that will support you, both professionally and socially. Sounds like you have made a good start!
[Cool]

Posted by Lamb Chopped (# 5528) on :

The anger is what forced me over the edge into weight loss surgery--given certain other issues, regular diet and exercise weren't doing it for me, and I was so angry at the diagnosis that I said "to hell with diabetes" and did the one thing supposed to be most effective (short term, anyway) for resolving it.

Not that that guarantees me a diabetes free life, or means I get to stop living like a diabetic, etc. unless I want it to come back full tilt.

But my chances are better now. Anger can be useful.

Posted by Evangeline (# 7002) on :

quote:
There is an old understanding that different types of sugar metabolize differently but that has been disproved. It is the total count and the general health of menu that really count, not rice over wheat or whatever.

Hmmm, it's certainly not disproved that glucose metabolizes a hell of a lot of faster, than say, the sugar in pasta. That has been scientifically proven as has the fact that carbs in certain food do cause a faster spike in bsl despite containing the same total quantity eg glucose versus the carbs in lentils metabolise or affect the blood sugar levels at very different rates.

There is a whole school of thought about the glyceamic index-(the speed at which carbs affect your blood sugar) it's not been disproven-it's been quite rigorously proven acutally see the University of Sydney website -it's just that in implementing diet recommendations people were saying "oh I can eat anything that's low Glyceamic index" whilst disregarding the total quantity of carbs they were eating which is pretty stupid, so the tr glyceamic index has fallen out of favour, probably for good reason.

Posted by blackbeard (# 10848) on :

Thanks, everyone. I will try to be furious in a constructive manner.
A few weeks before I went down with pulmonary embolisms, which led indirectly to a diagnosis of type 2 diabetes, I completed a half marathon; current ambition is to compete in next year's running of the same event. Maybe - maybe - in a quicker time. The "other half" is on hold for the moment.
We shall see. If I'm furious enough I might even take training a bit more seriously!

Posted by Darllenwr (# 14520) on :

Backtracking a little (quite a lot, in fairness), was this what folk had in mind when we were talking about devices that might be vulnerable to computer hackers? Unfortunately the on-line version of the article does not include the photograph that was in the paper copy, but the 'handset' looks very much like an i-phone. The pump would appear to be little bigger than a matchbox.

Posted by Janine (# 3337) on :

Had the quarterly blood & urine tests with the family doctor today, done for the meds I take and to check on my diabetes. A1C was not as fabulous as I'd like, at 6.3, though anything under 6.5 is OK with Doc. And the fasting sugar was 130, which is also higher than I'd like, though it's the high end of "OK" on the charts I look up. (Maybe having a couple of infections going and being on an antibiotic gives me an excuse? [Biased]

)

Year-end checkups all around; did dental yesterday, doing vision tomorrow, gastro next week and cardio @ month's end.

Posted by Welease Woderwick (# 10424) on :

HWMBO seems to be managing to keep his blood sugar in some sort of control but his mum's figures continue to look pretty dreadful - and her vision was poor beforehand!

Posted by Janine (# 3337) on :

I have a yearly vision check, due to the diabetes. So far every year it's no damage / "perfect vision". I fail to see how I keep testing at 20/20 when I really need at least a 1.50 or 1.75 magnification for reading or working with my computer on the job. (If I take up some fine sewing or crochet any time soon I'll have to go get some 2.00 glasses for that.)

I shouldn't worry about all that, I know, so long as there's a yearly report of zero damage happening.

Posted by Sober Preacher's Kid (# 12699) on :

quote:
Originally posted by Welease Woderwick:
HWMBO seems to be managing to keep his blood sugar in some sort of control but his mum's figures continue to look pretty dreadful - and her vision was poor beforehand!

That's why I say Type 2 is the harder disease. It's difficult to impossible sometimes to break a lifetime of habits. Children are more malleable.

Posted by Taliesin (# 14017) on :

Looks like an anniversary worth celebrating.

http://www.diabetes.org.uk/About_us/News_Landing_Page/Insulin-90-years-on--but-rate-of-diabetes-still-soaring/

Posted by Evangeline (# 7002) on :

quote:
That's why I say Type 2 is the harder disease. It's difficult to impossible sometimes to break a lifetime of habits. Children are more malleable.

Warning Evangeline is feeling crabby because she's recently had her second eye operation-this one to correct a side-effect of the operation she had 10 years ago to save the sight of her left eye.

A lifetime of a disease and consequent complications is much worse IMO than a disease you get as an adult, especially an older adult. Statistically outcomes are worse and at a younger age for type 1s. Given that you should be able to get by for a long time on diet control alone, with type 2, I see type 2 as a nuisance, type 1 remains a tragedy.

Posted by Janine (# 3337) on :

Just got the results from my quarterly bloodwork; all the cholesterols were acceptable, though I want to goose up the "good" cholesterol; liver & kidneys & thyroid doing well.

The A1C was acceptable at 6.6, although I don't like it that high and will work on it. Fasting sugar has been on the highest end of normal the last few times I tested it, and was again on bloodwork day.

None of the figures were worrisome to my doctor, not even the triglycerides, though they were about 14 points above normal. We blamed them on the somewhat higher-than-usual alcohol intake of my recent vacation.

Doctor suggested I could raise my metformin/glucophage to 1000 mg daily, from the 500 I've been on.

One thing comes to mind:
Since I do, in general, eat what's good for me;
Since I do get a basic reasonable amount of exercise, and
Since it seems as if the bulk of the excess weight I've piled on in the past 10 years has fallen in a pattern consistent with insulin-resistant weight gain...

Wouldn't it be fantastic if I did raise the metformin and it resulted in better weight loss? Seriously considering this.

Any opinions or past experience with glucophage & weight?

Posted by Lamb Chopped (# 5528) on :

quote:
Originally posted by Janine:
I fail to see how I keep testing at 20/20 when I really need at least a 1.50 or 1.75 magnification for reading or working with my computer on the job.

I'm so jealous. [Biased]

You can stay 20/20 forever, that's your distance vision. What's changing for you is your close-up stuff, and that's not measured in the 20/whatever format. And it's due to a different cause anyway--lens flexibility or lack thereof. Says the woman who was just advised to get trifocals, [Waterworks]

Posted by Janine (# 3337) on :

Trifocals? Yeesh. I avoid bifocals 'cause they make me nauseated. Trifocals would probably give me projectile vomiting.

Posted by Lamb Chopped (# 5528) on :

Yep, that's what I'm afraid of. I told the optical shop I wanted two pair of glasses, one for distance only and one for computer/print, and they told me It Couldn't Be Done. In a very superior tone of voice, with lots of yaffling about powers and whatnot! When I got stubborn, they sighed and promised to ring my ophthalmologist, hoping he would put me straight.

Today I got a most conciliatory voicemail asking me for my credit card details. Apparently it's possible after all. [Two face]

Posted by Evangeline (# 7002) on :

quote:
Originally posted by Janine:
I have a yearly vision check, due to the diabetes. So far every year it's no damage / "perfect vision". I fail to see how I keep testing at 20/20 when I really need at least a 1.50 or 1.75 magnification for reading or working with my computer on the job. (If I take up some fine sewing or crochet any time soon I'll have to go get some 2.00 glasses for that.)

I shouldn't worry about all that, I know, so long as there's a yearly report of zero damage happening.

I'm sure you and everybody else already knows this but it's worth saying again, a huge amount of eye damage can occur BEFORE it affects your vision, that's why it's really important to have a retinal specialist examine your retinas with dilated pupils so that action can be taken to treat any wayward blood vessels or fluid in the macula before it affects your vision.

Posted by Evangeline (# 7002) on :

quote:
Originally posted by Darllenwr:
Backtracking a little (quite a lot, in fairness), was this what folk had in mind when we were talking about devices that might be vulnerable to computer hackers? Unfortunately the on-line version of the article does not include the photograph that was in the paper copy, but the 'handset' looks very much like an i-phone. The pump would appear to be little bigger than a matchbox.

Backtracking a whole lot more, sorry I missed this before. No that's not the sort of device that might be vulnerable to computer hackers that we were discussing before. It seems the think in your link is a way of virtually communicating blood sugar tests to your health care team. Not a life-threatening situation although not great if that got hacked.

An insulin pump is a device that delivers insulin via a tiny teflon catheter inserted under the skin, this is connected to plastic tubing and a device about the size of a deck of cards that contains the insulin and required hardware. These devices also come with a little remote control , which can be used to deliver insulin without touching the pump. Hence the major worry that a hacker could deliver you a huge dose of insulin without you knowing-murder by remote control.

Link to Medtronic insulin pump info.

Posted by Niteowl2 (# 15841) on :

quote:
Originally posted by Lamb Chopped:
Yep, that's what I'm afraid of. I told the optical shop I wanted two pair of glasses, one for distance only and one for computer/print, and they told me It Couldn't Be Done. In a very superior tone of voice, with lots of yaffling about powers and whatnot! When I got stubborn, they sighed and promised to ring my ophthalmologist, hoping he would put me straight.

Today I got a most conciliatory voicemail asking me for my credit card details. Apparently it's possible after all.

That's what I have for glasses and have had for years. Wonder what they were thinking.

Posted by Janine (# 3337) on :

Now that I've kicked my Metformin up to 1000 mg, and now that I'll be powerwalking uphill and down over the big bridge spanning the Intercoastal Waterway, we'll see how the weight loss goes.

When I first started the Metformin, I found I didn't really want the fun carbs any more, not even chocolate. Now, with double the dosage per day for only three days, already I notice I'm not ravenous any more.

Too soon to tell if it's really the Metformin making a difference in the sugar being processed and the insulin being over-produced, or if it's only a placebo effect. Food and I have a long and tumultuous love affair going, so it'll take more than a little reduction in appetite to make a substantial difference.

Posted by Evangeline (# 7002) on :

Good luck with it Janine!

Posted by Zacchaeus (# 14454) on :

Janine, I recognise that relationships with food - good luck with it all.

Posted by blackbeard (# 10848) on :

quote:
Originally posted by Janine:

.....Wouldn't it be fantastic if I did raise the metformin and it resulted in better weight loss? Seriously considering this.

Any opinions or past experience with glucophage & weight?

Haven't checked weight for a while, but it seems to be going down along with waist measurement.

500 mg Metformin twice daily.

However weight was going down a bit before I was diagnosed so I suspect Metformin has little to do with it; exercise probably has more effect. Realising the effect of weight on health may also have an appetite suppressant effect.

But I'm not very heavy anyway, my BMI is boring.

And having written above reminds me that I'm getting lazy and should get back to doing more exercise.

Posted by Janine (# 3337) on :

I can say that my (normally ravenous) appetite has quieted. It's not that I don't enjoy my meals -- good God, I love to eat! -- but I'm not driven to it, since starting the 1,000 mg on Sunday. I'd split it into 500 am/pm, but I know I won't successfully comply with that, would always be forgetting the pm or taking it at wildly different times. Staying with the whole 1,000 a.m. for now.

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