Started testing again pending "official" diagnosis

ButtterflyLady · Sep 21, 2015

Brunneria said:
Hi,
Just wanted to interject an alternative viewpoint into the thread.

I am a type 2 diabetic. Have been for 3-5 years. After 10+ years of pre-D. But i am not diagnosed T2. I have kept my blood glucose tests low by diet and exercise. My HbA1c has been too low for diagnosis (so far), and while my fasting bg is often over 7, it hasn't been on the rare occasion that my surgery gives me the test (averages every 1 x every 18 months).

Reversal is a lovely idea, and a possibility for some of us. Assuming that clamping down on diet, and losing weight MAY work for you is a great goal, but it may not work for you. It doesn't always. I have never had a fatty liver, so losing the fat won't reverse D for me.

So, here i am, 5 ish years after developing T2. Undiagnosed. No foot or eye checks. No HbA1c, unless i can persuade them. No metformin (which would help my morning readings, and my appetite, and maybe help a little with heart protection). If i had an accident, and was hospitalised, my diabetes would not be factored in to my treatment regime. I have paid privately for HbA1cs. If i was on metformin, i would get free prescriptions and (maybe) free test strips.

With a diagnosis, I would receive all of those, which would give me far more information, checks and backup when managing this condition. It isn't about the money. It is about checks for retinopathy, neuropathy, kidney failure.

In your place, i would go for reversal and dietary control, and i would bust a gut to do so, but i would wait until AFTER that next fasting blood test, and if i came away from it with a diagnosis, i would see it as a positive thing. And THEN i would turn my life around and stun the doc and nurse with my impressive control and hoped for reversal.

The benefits of having been diagnosed outweigh the cons - IMHO.

I have read about some prediabetics being prescribed metformin, which I think can be a good idea. I'm assuming you have asked and been turned down? You mention FBG and HbA1c but were your OGTT results also not diabetic?

Prior to this post I didn't know you were in this situation. I think it's such a shame they didn't diagnose you.

ButtterflyLady · Sep 21, 2015

JenniferW said:
I wasn't going to rush to ask for metformin because partly from what people here have said and partly what they're teaching on the course, I wonder if that might not be the most appropriate start. But I was already thinking about asking for another Hb1ac sooner than they're planning.

In general, now I've thought of having a week or two of making very careful records of food and exercise as well as test results, I do actually want to do that. One thing, for example, is that I think I've been regularly having dawn phenomena high readings, and I have the impression metformin might not be the most appropriate medication for that. And if the morning readings stay high, regardless of lower levels later in the day, the HbA1c is going to stay higher, isn't it?

I feel I'm hi-jacking someone else's thread here, though. I gave the details of my experiences because I saw some similarities. Where are you yourself now at, TigerLily?

If you're concerned about stomach and bowel side effects, only some people get those, and you won't know until you try the medication. I'm one of the lucky ones who has never had those side effects in 4 years. What are they teaching about it on the course? One of the things metformin works on is to lower the morning readings, by reducing the glucose the liver produces. This article explains what I'm talking about:
http://www.phlaunt.com/diabetes/14045911.php

JenniferW · Sep 21, 2015

[QUOTE="CatLadyNZ, post: 951558, member: 43498"..... This article explains what I'm talking about:
http://www.phlaunt.com/diabetes/14045911.php[/QUOTE]

I want time to learn about all of this before talking to the GP again. I've got other health issues in the equation, and some of that's what makes me want to have time to think (and learn) before trying to steer the GP one way or another.

Brunneria · Sep 21, 2015

CatLadyNZ said:
I have read about some prediabetics being prescribed metformin, which I think can be a good idea. I'm assuming you have asked and been turned down? You mention FBG and HbA1c but were your OGTT results also not diabetic?

Prior to this post I didn't know you were in this situation. I think it's such a shame they didn't diagnose you.

As always, things more complicated than at first sight.
I had borderline FBG and OGTT about 5 years ago, followed by a pre-D hba1c.
The OGTT made me feel dreadful, nausea, headache, blurred vision, massive body ache from the insulin resistance. I ended up with time off work unable to drive or focus on the computer screen.

So i refused the next OGTT, and asked for more FBGs, which were borderline again. And my doc said that since i was borderline, the OGTT was the only decider he would accept. Achieving my low carb hbaic confused him, apparently. Explaining did no good, and I am not going to come off low carb, for weeks, to get to point where i can tolerate another OGTT. I would put on weight, feel dreadful, burn up beta cells, and add fat to my un-fat liver. No way.

As for the metformin, i have asked (to treat my PCOS, of course!) but different nhs trusts have different prescribing rules, and this one won't prescribe met without a clear diagnosis of diabetes. Too expensive.

I actually quite sympathise with my doc. If i was a normal patient, he has made the right decisions, and followed his standard protocols. But I'm not. I'm interested, responsible, pro-active, breaking all his nhs diet rules, not following his instructions, controllong my T2 without his help (except for that pesky dawn phenomenon!) and i have a history of medical symptoms that were dismissed as hypochondria by previous docs (turned out to be pcos, reactive hypoglycaemia and prolactinoma), so I bet it says something like 'non compliant, neurotic troublemaker' all over my notes.

Bluetit1802 · Sep 21, 2015

CatLadyNZ said:
If it was me, I wouldn't wait, I would just make an appointment and ask for metformin. And also for 3 monthly blood tests until below 42 HbA1c, then 6 monthly.

I don't understand why you are pushing Metformin on this poster. With an HbA1c of 47 she is very borderline, and still just under the diabetic standard, which is 48 and above. It is fair to allow her time to do something about this by diet and a bit of added exercise only before pushing chemicals down her throat, when they may not be needed. It is unusual to prescribe Metformin to newly diagnosed where the A1c is 53 or under.

Diet is the key, not Metformin at this stage.

I do agree she should ask for an interim A1c at 3 months though.

ButtterflyLady · Sep 21, 2015

Bluetit1802 said:
I don't understand why you are pushing Metformin on this poster. With an HbA1c of 47 she is very borderline, and still just under the diabetic standard, which is 48 and above. It is fair to allow her time to do something about this by diet and a bit of added exercise only before pushing chemicals down her throat, when they may not be needed. It is unusual to prescribe Metformin to newly diagnosed where the A1c is 53 or under.

Diet is the key, not Metformin at this stage.

I do agree she should ask for an interim A1c at 3 months though.

I'm not "pushing chemicals down her throat", bluetit. No hyperbole necessary.

It may be unusual to prescribe metformin in prediabetes but there is good reason for it, and many people use it when their blood levels are 42-47, because there is research evidence of complications at this HbA1c level, believe it or not.

If you read this article by the very knowledgable Jenny Ruhl you will see all the reasons why metformin is an excellent choice in prediabetes and diabetes, including at diagnosis. Since it's a long article, here is the part that backs up my view:

"Metformin Started Early Far More Effective than Metformin Started Later
A study published of 1,799 Kaiser patients who were able to lower their A1c below 7.5% using Metformin found that when patients were started on Metformin immediately after diagnosis, they were able to stay at an A1c lower than 7% for longer than did patients whose doctors waited a year before starting them on the drug.

Secondary Failure of Metformin Monotherapy in Clinical Practice
Jonathan B. Brown. Diabetes Care Diabetes Care March 2010 vol. 33 no. 3 501-506 doi: 10.2337/dc09-1749

A more detailed discussion of this study can be found here:

Diabetes in Control: Early Treatment Doubles Chance of Success for People with Diabetes

This is important. Many people with diabetes resist taking a drug thinking that it is better to attempt to lower blood sugar with diet or exercise alone. Because the action Metformin is different from the effect of cutting carbs or exercising, this may be a mistake. It may be better to start metformin along with other approaches as soon as you receive a diagnosis of abnormal blood sugar (including a diagnosis of pre-diabetes) rather than waiting."

Source: http://www.phlaunt.com/diabetes/14045911.php

I do suggest you read the whole article, so you gain a better understanding of the chemicals that many of us happily push down our throats.

ButtterflyLady · Sep 21, 2015

Brunneria said:
As always, things more complicated than at first sight.
I had borderline FBG and OGTT about 5 years ago, followed by a pre-D hba1c.
The OGTT made me feel dreadful, nausea, headache, blurred vision, massive body ache from the insulin resistance. I ended up with time off work unable to drive or focus on the computer screen.

So i refused the next OGTT, and asked for more FBGs, which were borderline again. And my doc said that since i was borderline, the OGTT was the only decider he would accept. Achieving my low carb hbaic confused him, apparently. Explaining did no good, and I am not going to come off low carb, for weeks, to get to point where i can tolerate another OGTT. I would put on weight, feel dreadful, burn up beta cells, and add fat to my un-fat liver. No way.

As for the metformin, i have asked (to treat my PCOS, of course!) but different nhs trusts have different prescribing rules, and this one won't prescribe met without a clear diagnosis of diabetes. Too expensive.

I actually quite sympathise with my doc. If i was a normal patient, he has made the right decisions, and followed his standard protocols. But I'm not. I'm interested, responsible, pro-active, breaking all his nhs diet rules, not following his instructions, controllong my T2 without his help (except for that pesky dawn phenomenon!) and i have a history of medical symptoms that were dismissed as hypochondria by previous docs (turned out to be pcos, reactive hypoglycaemia and prolactinoma), so I bet it says something like 'non compliant, neurotic troublemaker' all over my notes.

We have a few things in common, as it happens I had similar symptoms after my OGTT and I would never have another one. It's a cruel and unusual punishment for some people. I'm surprised (and saddened) that they don't give metformin for your PCOS. Especially since you also need it for your blood sugars. I hope something happens like a new doctor comes along or the rules change.

Brunneria · Sep 21, 2015

Well, watch this space i've just had another periodic FBG test (this morning) which is probably why i thought to post on this thread! And it was probably over 7, in which case, the wonderful world of nhs diabetic monitoring lies at my feet. Lol.

runner2009 · Sep 21, 2015

In Internet Marketing we have a saying that states ranking number 15 is the same as ranking 150 and I believe the same applies to determining when one is a diabetic / borderline diabetic / pre-diabetic. What's a couple of points either way especially when you factor in each individuals genetics, testing errors, etc.

Most MDs and the ADA have the fasting numbers too high - I had a fasting BG of 100 for years and was good.

In truth these normal or borderline numbers are too high especially if you want to avoid complications later in life.

The bottom line is that overall 30% to 35% of the world's population has a genetic propensity to having metabolic problems when eating high carbo diets, with some populations like Marshallese and the Pima Indians reach 90% of the population with metabolic issues on high or dense carbo diets.

Maybe this was an adaptive trait when feast and famine ruled the day?

If you have a genetic predisposition for metabolic disorders - you can manage it with a combination of drugs, diet and exercise you can't reverse it you can only manage it.

The key is not about how you control your BG levels but controlling it so that is as close to the consensus of low normal / including spikes / as possible IF you want to live a long life and possibly reverse damage that you've done.

That in my mind can be accomplished in many ways and as has been stated many times just because you have had to use meds and insulin to control you BG levels doesn't mean you failed it means your disease in all likelihood advanced.

It is my opinion that many type 2 would have much better control using insulin and in many cases protect their remaining beta cells.

With insulin - especially in small dosages with a low carbo diet - you can get normal readings.

There are 2 reasons why Type 2 and Type 1.5 don't get insulin - one is cost and two the MDs are afraid of hypos - its malpractices if someone dies of a hypo but normal if you die from a cardiovascular event that could have been prevented with lower BG levels.

I'm not advocating insulin along with a high carb diet because you do have a big risk of hypos.

I don't know about in the UK but here in the US its all about controlling the expense and maximizing big pharmas profits

JenniferW · Sep 21, 2015

Wow! Lots of interesting things got said along the way in those last few posts - lots more to read and get my head around.

ButtterflyLady · Sep 21, 2015

runner2009 said:
In Internet Marketing we have a saying that states ranking number 15 is the same as ranking 150 and I believe the same applies to determining when one is a diabetic / borderline diabetic / pre-diabetic. What's a couple of points either way especially when you factor in each individuals genetics, testing errors, etc.

Most MDs and the ADA have the fasting numbers too high - I had a fasting BG of 100 for years and was good.

In truth these normal or borderline numbers are too high especially if you want to avoid complications later in life.

The bottom line is that overall 30% to 35% of the world's population has a genetic propensity to having metabolic problems when eating high carbo diets, with some populations like Marshallese and the Pima Indians reach 90% of the population with metabolic issues on high or dense carbo diets.

Maybe this was an adaptive trait when feast and famine ruled the day?

If you have a genetic predisposition for metabolic disorders - you can manage it with a combination of drugs, diet and exercise you can't reverse it you can only manage it.

The key is not about how you control your BG levels but controlling it so that is as close to the consensus of low normal / including spikes / as possible IF you want to live a long life and possibly reverse damage that you've done.

That in my mind can be accomplished in many ways and as has been stated many times just because you have had to use meds and insulin to control you BG levels doesn't mean you failed it means your disease in all likelihood advanced.

It is my opinion that many type 2 would have much better control using insulin and in many cases protect their remaining beta cells.

With insulin - especially in small dosages with a low carbo diet - you can get normal readings.

There are 2 reasons why Type 2 and Type 1.5 don't get insulin - one is cost and two the MDs are afraid of hypos - its malpractices if someone dies of a hypo but normal if you die from a cardiovascular event that could have been prevented with lower BG levels.

I'm not advocating insulin along with a high carb diet because you do have a big risk of hypos.

I don't know about in the UK but here in the US its all about controlling the expense and maximizing big pharmas profits

I too am in favour of insulin therapy for T2s an T1.5s who need it (and that doesn't mean everyone of course).

Some people can control BGs with diet, some can't, and it is not necessarily due to their choices, it might just be the way their body is.

It's also possible and reasonable to use metformin or insulin or both from the time of diagnosis and then to stop later on if they are shown to be unnecessary. This is explained at Blood Sugar 101.

My HbA1c has been well below 48 for 18 months, and I still happily take metformin, and my GP agrees with me, and my HbA1c is now 33. It has about 5 benefits including protecting me from heart disease and cancer, and I have never had any side effects. So for me, it makes sense.

I don't "push" metformin on anyone (tempted to roll my eyes again)... I provide information about it so people can understand more about the benefits and side effects to help them with their decision. And I intend to keep doing so

Mike d · Sep 21, 2015

CatLadyNZ said:
I don't "push" metformin on anyone (tempted to roll my eyes again)...

What might work for you is fine. I hate pills and prefer diet and exercise. I trust you wouldn't make similar comments about statins.

Metformin (for me) was OK .... but FIRST opportunity I had to dump them, I did.

ButtterflyLady · Sep 21, 2015

Mike D said:
What might work for you is fine. I hate pills and prefer diet and exercise. I trust you wouldn't make similar comments about statins.

Metformin (for me) was OK .... but FIRST opportunity I had to dump them, I did.

Thanks for recognising that I have enough intelligence to distinguish between different types of medication.

Just curious, why do you "hate pills"? Do you hate all pills? What about when the benefits outweigh the risks in a given situation?

Mike d · Sep 21, 2015

CatLadyNZ said:
Do you hate all pills? What about when the benefits outweigh the risks in a given situation?

Yes I do. Benefits are down to the individual and as perceptions / opinions have so many variables, I'm in agreement with @Bluetit1802

If you are borderline, NO way would I take metformin. Something else first yes, but that as a resort? No.

ButtterflyLady · Sep 21, 2015

Mike D said:
Yes I do. Benefits are down to the individual and as perceptions / opinions have so many variables, I'm in agreement with @Bluetit1802

If you are borderline, NO way would I take metformin. Something else first yes, but that as a resort? No.

You hate all pills. Does that include any pills you have taken that may have saved your life, such as antibiotics?

I'd like to respond to your second sentence but I'm afraid I don't really understand it. Can you explain what you mean? And, what part of what bluetit said are you in agreement with?

What I meant about benefits and risks was that for each patient, thinking about their own medical condition at a given time, there are benefits and risks to be considered. So I'm not sure how hating all pills (without saying why) is helpful in optimising one's health?

As for those doctors who offer metformin to prediabetics, did you read the article I linked? If not, I'm curious as to what you base your view on.

If a drug can help reduce the risks of complications like retinopathy, and the person doesn't have side effects like constant diarrhoea, I'm puzzled as to why they wouldn't try it.

By all means, if someone wants to try reducing their BGs without metformin, that's fine and not an unreasonable decision. But if they find after genuinely low carbing for say 4 weeks that their BGs are not coming down enough, and they don't get constant diarrhoea or other side effects from metformin, why rule it out? Because pills are bad? I guess I don't get that.

Pipp · Sep 22, 2015

I understand the concept of avoiding medication if there is another non-medication solution.
All too often I have seen elderly relatives and friends have all sorts of complication from polypharmacy.

ButtterflyLady · Sep 22, 2015

Pipp said:
I understand the concept of avoiding medication if there is another non-medication solution.
All too often I have seen elderly relatives and friends have all sorts of complication from polypharmacy.

I agree, polypharmacy increases risk because 5 or more meds will have unpredictable interactions plus there is more risk of error in taking them.

I'm on more than 5 meds, because each one is necessary and beneficial and in most cases there is no non-medication alternative. I've learned over the years to make each medication decision carefully and to be prepared to change if it doesn't work out.

Needing lots of meds is no fun. For example, I'm trying to decide whether I'd rather have restless legs syndrome or chronic fatigue. I would love it if there were effective alternatives but I haven't seen convincing research evidence for anything other than the meds I'm trying.

Mike d · Sep 22, 2015

CatLadyNZ said:
You hate all pills. Does that include any pills you have taken that may have saved your life, such as antibiotics?

I'd like to respond to your second sentence but I'm afraid I don't really understand it. Can you explain what you mean? And, what part of what bluetit said are you in agreement with?

That first sentence is a distraction. Antibiotics can save your life, so of course you'd take them. Temporary.

The second point I've already made ..... why would you take a pill to (supposedly) control a condition that might well be corrected thru diet / exercise?

Everything @Bluetit1802 said I agree with, despite the fact you might not. Line of least resistance first, pills a distant second.

Pipp · Sep 22, 2015

I have more than 5 prescribed medications too. Probably would not be alive long without them. If there was any way of managing conditions without I would, even if that meant I needed to put in a fair bit of effort or make changes to diet or something else I could adjust. I have also managed to stop taking Metformin after making changes to diet to bring about non-diabetic BG levels, and have refused some of the meds offered for other conditions because I can tolerate the conditions' symptoms better than the meds. It would depend on individual tolerance levels, I guess, but my own preference is to ingest as few toxic substances as possible. Physicians are quick to reach for the prescription pad, and the consequences are not always as intended.

ButtterflyLady · Sep 22, 2015

Mike D said:
That first sentence is a distraction. Antibiotics can save your life, so of course you'd take them. Temporary.

The second point I've already made ..... why would you take a pill to (supposedly) control a condition that might well be corrected thru diet / exercise?

Everything @Bluetit1802 said I agree with, despite the fact you might not. Line of least resistance first, pills a distant second.

I'm only going by what you said, that you hate all pills. Potentially, metformin can save lives too. But for the most part it improves quality of life, which is a perfectly fine reason to take a med IMO.

I've explained why I disagree with bluetit, and provided my source, which I don't think has been read. The article explains why people take metformin to help control BGs when diet and exercise are not enough. Why allow 3 or more months of damage that can be avoided (and let's remember that this started with me giving info to someone whose doctor had left them untreated for 3 months already). That's what we do at this forum - when a doctor makes a mistake, we give the person info that may help them get better care. A lot of doctors seem to ignore prediabetes, but the more enlightened ones do something to help before things get worse.

I'm at a loss to understand why people wouldn't make use of a technology that can help them, based on a hatred of pills or a belief that they are "chemicals" and that makes them bad. Each to their own of course. People interested in learning about metformin will read the article and those who want to maintain their existing view won't.

Started testing again pending "official" diagnosis

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