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feeling like a pin cushion - but MUCH better...

M

mufngruf

Member
Messages
5
Type of diabetes
Type 2
I was diagnosed as a type 2 about 8 years ago and did very little about it except diet and listening to the doom and gloom nagging from the doc and nurse and gradually take more pills..... but, in general, I felt no symptoms at all, save for a slight neuropathy in the soles of my feet... but nothing that I worried about.
I recently had a UTI and my sugar spiked. I had been taking 2x500mg met a day, and 1x10mg lisinopril.. but increased it to three mets and added glic.
That was about two months ago..
Since (obviously) I am unable to take my own Ha1bc readings.. I had no real way to "control my diabetes" as I kept getting instructed to do by the surgery staff and docs, because I had no way of knowing what was affecting it and by how much and how often.
I asked if I could please get a "sticker" and FINALLY (after all these years of telling me how DANGEROUS raised BG can be) they agreed.. but kept assuring me that THOSE readings don't really matter - only the quarterly bloods and the results of the H-test.
I was also, after all this time, now advised to eat three meals a day - having previously been a "tea'n'toast 'til teatime" type.
I began on June 15th, this year, taking readings and my first one was 13.0. I kept a spreadsheet of readings, food and drink consumed and exercise taken...
I bought strips off eBay.. and took readings almost every hour... for over a month.. and I kept track of each reading and also my daily average reading.. and they gradually went down from the 13's to the 12's, then the 10's and 9's.. and so on until, this past week my daily average reading (at least four per day) is in the mid 7's.
My average reading since I began at 13 is now 8.7.. an average of all the dailies..
I KNOW that's not ideal... but it's only been a month or so... and I feel better..
BUT MOSTLY what I feel better about is the CONTROL...
I NOW understand... I can now actually MONITOR MY OWN BG.. I can see what affects it.. and when.. and how much...

I had a Ha1bc test done this week (three months since the last one) and my reading had gone from the high nineties to the mid 70's.. again, not perfect.. but a whole lot better...and these readings were from a period BEFORE I began monitoring and included the period of the great UTI spike.
So - I feel that, so far, it's been a success and will ask the doc next if I can drop the glic, as I've heard it can hinder weight loss (my REAL problem)..
but I am SO **** ANGRY that a doctor shouted (literally) at me over a year ago "You'd just not controlling your diabetes" - but would not explain to me exactly what he meant or how I could do it... it was all so VAGUE...
I already ate a healthy diet.. with, like EVERYONE else, the occasional binge.
For other, who may be in my once -semi-perilous situation, PLEASE.. no matter what you have to do, buy a sticker....(ask your doc first if you can get an NHS one but they'll only give you enough reading strips for three months at one-a-day, so you'll end up buying them off eBay anyway..)
It'll cost you some money that you may feel you cannot afford.. but I URGE you.. with all my heart.. to feel the same way that I now feel with this sense of CONTROL...
Don't be afraid of the pin-pricks.. they aren't very painful and you will very quickly learn that the info they give you is well worth the temporary discomfort.
Start a chart.. spreadsheet if you can, notepad if you find it easier.. but for at least a month, take the reading at least four times a day - more at the beginning. I generally take one day a week and take a reading every two hours, morn to night...
What I have now is the KNOWLEDGE that my diabetes is coming under control.. and heading towards reversal. My lo-carb diet is working out well, my exercise level is increasing from zero to.. well, something, at least.
As with most of those "diseases" that you may be told is life/limb threatening, progressive and generally irreversible, the biggest fear is lack of control... the idea that you're suddenly placed on an ever increasing medication and diet carousel and have no control over the speed, direction or whether or not you'll fall off.
Today, after about seven weeks, I can eat what I want, when I want... and I'm still losing weight and my BG readings are still going down.. BECAUSE I can measure and know what is happening within my body..

and I'm not afraid anymore.

PS - I'll give y'all one more piece of advice which helped me ENORMOUSLY... I asked my doctor to give me the last three years Ha1bc results and the time periods they covered.. and GUESS WHAT...??
The high ones covered periods when I had..
1. Spent a week in Mexico (eating and drinking without a care)
2. Spent a week in Jamaica (ditto)
3. Had a big family Xmas/New year blowout (ditto again)

and yet, each time these actual circumstances were not taken into account - the meds were simply increased...
and yet all the readings covered by periods when I was just at home, eating/drinking normally and getting at least SOME exercise.. were hovering in the high fifties/low sixties... which is not exactly panic stations for a 67 year old fat guy...

So - when you get these readings after the tests, keep track of when they were produced and what you were doing in the months since the last one...
and that's the end of my lecture.
 
Terrific post, @mufngruf - so glad that you went for it 'alone' - ie despite advice that was at best unhelpful and at worst entirely unsupportive - and with your own experience and expertise you are clearly reaping dividends.

Keep up the good work!

:)
 
mufngruf said:
I was diagnosed as a type 2 about 8 years ago and did very little about it except diet and listening to the doom and gloom nagging from the doc and nurse and gradually take more pills..... but, in general, I felt no symptoms at all, save for a slight neuropathy in the soles of my feet... but nothing that I worried about.
I recently had a UTI and my sugar spiked. I had been taking 2x500mg met a day, and 1x10mg lisinopril.. but increased it to three mets and added glic.
That was about two months ago..
Since (obviously) I am unable to take my own Ha1bc readings.. I had no real way to "control my diabetes" as I kept getting instructed to do by the surgery staff and docs, because I had no way of knowing what was affecting it and by how much and how often.
I asked if I could please get a "sticker" and FINALLY (after all these years of telling me how DANGEROUS raised BG can be) they agreed.. but kept assuring me that THOSE readings don't really matter - only the quarterly bloods and the results of the H-test.
I was also, after all this time, now advised to eat three meals a day - having previously been a "tea'n'toast 'til teatime" type.
I began on June 15th, this year, taking readings and my first one was 13.0. I kept a spreadsheet of readings, food and drink consumed and exercise taken...
I bought strips off eBay.. and took readings almost every hour... for over a month.. and I kept track of each reading and also my daily average reading.. and they gradually went down from the 13's to the 12's, then the 10's and 9's.. and so on until, this past week my daily average reading (at least four per day) is in the mid 7's.
My average reading since I began at 13 is now 8.7.. an average of all the dailies..
I KNOW that's not ideal... but it's only been a month or so... and I feel better..
BUT MOSTLY what I feel better about is the CONTROL...
I NOW understand... I can now actually MONITOR MY OWN BG.. I can see what affects it.. and when.. and how much...

I had a Ha1bc test done this week (three months since the last one) and my reading had gone from the high nineties to the mid 70's.. again, not perfect.. but a whole lot better...and these readings were from a period BEFORE I began monitoring and included the period of the great UTI spike.
So - I feel that, so far, it's been a success and will ask the doc next if I can drop the glic, as I've heard it can hinder weight loss (my REAL problem)..
but I am SO **** ANGRY that a doctor shouted (literally) at me over a year ago "You'd just not controlling your diabetes" - but would not explain to me exactly what he meant or how I could do it... it was all so VAGUE...
I already ate a healthy diet.. with, like EVERYONE else, the occasional binge.
For other, who may be in my once -semi-perilous situation, PLEASE.. no matter what you have to do, buy a sticker....(ask your doc first if you can get an NHS one but they'll only give you enough reading strips for three months at one-a-day, so you'll end up buying them off eBay anyway..)
It'll cost you some money that you may feel you cannot afford.. but I URGE you.. with all my heart.. to feel the same way that I now feel with this sense of CONTROL...
Don't be afraid of the pin-pricks.. they aren't very painful and you will very quickly learn that the info they give you is well worth the temporary discomfort.
Start a chart.. spreadsheet if you can, notepad if you find it easier.. but for at least a month, take the reading at least four times a day - more at the beginning. I generally take one day a week and take a reading every two hours, morn to night...
What I have now is the KNOWLEDGE that my diabetes is coming under control.. and heading towards reversal. My lo-carb diet is working out well, my exercise level is increasing from zero to.. well, something, at least.
As with most of those "diseases" that you may be told is life/limb threatening, progressive and generally irreversible, the biggest fear is lack of control... the idea that you're suddenly placed on an ever increasing medication and diet carousel and have no control over the speed, direction or whether or not you'll fall off.
Today, after about seven weeks, I can eat what I want, when I want... and I'm still losing weight and my BG readings are still going down.. BECAUSE I can measure and know what is happening within my body..

and I'm not afraid anymore.

PS - I'll give y'all one more piece of advice which helped me ENORMOUSLY... I asked my doctor to give me the last three years Ha1bc results and the time periods they covered.. and GUESS WHAT...??
The high ones covered periods when I had..
1. Spent a week in Mexico (eating and drinking without a care)
2. Spent a week in Jamaica (ditto)
3. Had a big family Xmas/New year blowout (ditto again)

and yet, each time these actual circumstances were not taken into account - the meds were simply increased...
and yet all the readings covered by periods when I was just at home, eating/drinking normally and getting at least SOME exercise.. were hovering in the high fifties/low sixties... which is not exactly panic stations for a 67 year old fat guy...

So - when you get these readings after the tests, keep track of when they were produced and what you were doing in the months since the last one...
and that's the end of my lecture.
Click to expand...


Really well done on taking such positive steps to improve your health. If you continue as you has rercently begun, I think you can look forward to a lower number next time.

I really do empathise with your frustration about testing. At diagnosis, I was told there was no need to test, as I wouldn't understand them. This comment without any enquiry into my background or likely aptitudes), and to the very hub of it all. How can testing be unimportant when it it gives us such immediate feedback. being told only the HbA1c matters is bonkers. It's a bit like being told that when a builder is building a house, each brick doesn't matter, only the whole house. Like blood scores, the odd one being slightly off (as our bloods might be if we slip up on a food choice, or have a naughty treat), too many of those will impact the end result.

To be honest, when reviewing an HbA1c, I agree that periods like Christmas, birthdays, holidays and the like should be ignored, as these tend to be things that keep rolling round. A birthday arrives with great regularity, and every year, so that's just life, and one of life's ebbs and flows. Once you've got a handle on things, these special days will of course still happen, but maybe not as spectacularly, in terms of impacts on your bloods.

Keep testing. Please keep testing. It's such a crucial factor, in my view.

The reality, in my view, is the NHS can't afford to fund testing for everyone. I can appreciate that, but why not just have the honest conversation?

I'll get off my high horse now, via my soapbox.

Good luck with it all. it's suddenly very empowering, isn't it?
 
mufngruf said:
I was diagnosed as a type 2 about 8 years ago and did very little about it except diet and listening to the doom and gloom nagging from the doc and nurse and gradually take more pills..... but, in general, I felt no symptoms at all, save for a slight neuropathy in the soles of my feet... but nothing that I worried about.
I recently had a UTI and my sugar spiked. I had been taking 2x500mg met a day, and 1x10mg lisinopril.. but increased it to three mets and added glic.
That was about two months ago..
Since (obviously) I am unable to take my own Ha1bc readings.. I had no real way to "control my diabetes" as I kept getting instructed to do by the surgery staff and docs, because I had no way of knowing what was affecting it and by how much and how often.
I asked if I could please get a "sticker" and FINALLY (after all these years of telling me how DANGEROUS raised BG can be) they agreed.. but kept assuring me that THOSE readings don't really matter - only the quarterly bloods and the results of the H-test.
I was also, after all this time, now advised to eat three meals a day - having previously been a "tea'n'toast 'til teatime" type.
I began on June 15th, this year, taking readings and my first one was 13.0. I kept a spreadsheet of readings, food and drink consumed and exercise taken...
I bought strips off eBay.. and took readings almost every hour... for over a month.. and I kept track of each reading and also my daily average reading.. and they gradually went down from the 13's to the 12's, then the 10's and 9's.. and so on until, this past week my daily average reading (at least four per day) is in the mid 7's.
My average reading since I began at 13 is now 8.7.. an average of all the dailies..
I KNOW that's not ideal... but it's only been a month or so... and I feel better..
BUT MOSTLY what I feel better about is the CONTROL...
I NOW understand... I can now actually MONITOR MY OWN BG.. I can see what affects it.. and when.. and how much...

I had a Ha1bc test done this week (three months since the last one) and my reading had gone from the high nineties to the mid 70's.. again, not perfect.. but a whole lot better...and these readings were from a period BEFORE I began monitoring and included the period of the great UTI spike.
So - I feel that, so far, it's been a success and will ask the doc next if I can drop the glic, as I've heard it can hinder weight loss (my REAL problem)..
but I am SO **** ANGRY that a doctor shouted (literally) at me over a year ago "You'd just not controlling your diabetes" - but would not explain to me exactly what he meant or how I could do it... it was all so VAGUE...
I already ate a healthy diet.. with, like EVERYONE else, the occasional binge.
For other, who may be in my once -semi-perilous situation, PLEASE.. no matter what you have to do, buy a sticker....(ask your doc first if you can get an NHS one but they'll only give you enough reading strips for three months at one-a-day, so you'll end up buying them off eBay anyway..)
It'll cost you some money that you may feel you cannot afford.. but I URGE you.. with all my heart.. to feel the same way that I now feel with this sense of CONTROL...
Don't be afraid of the pin-pricks.. they aren't very painful and you will very quickly learn that the info they give you is well worth the temporary discomfort.
Start a chart.. spreadsheet if you can, notepad if you find it easier.. but for at least a month, take the reading at least four times a day - more at the beginning. I generally take one day a week and take a reading every two hours, morn to night...
What I have now is the KNOWLEDGE that my diabetes is coming under control.. and heading towards reversal. My lo-carb diet is working out well, my exercise level is increasing from zero to.. well, something, at least.
As with most of those "diseases" that you may be told is life/limb threatening, progressive and generally irreversible, the biggest fear is lack of control... the idea that you're suddenly placed on an ever increasing medication and diet carousel and have no control over the speed, direction or whether or not you'll fall off.
Today, after about seven weeks, I can eat what I want, when I want... and I'm still losing weight and my BG readings are still going down.. BECAUSE I can measure and know what is happening within my body..

and I'm not afraid anymore.

PS - I'll give y'all one more piece of advice which helped me ENORMOUSLY... I asked my doctor to give me the last three years Ha1bc results and the time periods they covered.. and GUESS WHAT...??
The high ones covered periods when I had..
1. Spent a week in Mexico (eating and drinking without a care)
2. Spent a week in Jamaica (ditto)
3. Had a big family Xmas/New year blowout (ditto again)

and yet, each time these actual circumstances were not taken into account - the meds were simply increased...
and yet all the readings covered by periods when I was just at home, eating/drinking normally and getting at least SOME exercise.. were hovering in the high fifties/low sixties... which is not exactly panic stations for a 67 year old fat guy...

So - when you get these readings after the tests, keep track of when they were produced and what you were doing in the months since the last one...
and that's the end of my lecture.
Click to expand...
Well Done. You have followed a similar progression as I did, and we reached similar positions. I published my progress in a thread My Personal Journey, and the graph I uploaded shows a huge spike over Christmas, so you are not alone there. I have been able to reduce my Glic tabs due to an LC diet, and am in the process of dropping one more tab there. My daily average based on 3 reading/day is running at 5.4, having dropped from around 15, so you should be able to get there soon. As you get closer to these low figures, then you will be approaching hypoland, and get readings sub 4.0 This may send your HCP team into a spin, but I found it an ideal way to request strips on scrip. On Glic, they are obliged to support self monitoring where you can provide evidence of risk. It would be an idea to do the Hypo Awareness online course here on DCUK so you can allay their fears.

I find my 'hypo' episodes are quite gentle and no problem. I was more concerned when I was on 4xglic tabs a day, but now I am on 2 a day its a doddle. It is so nice to see daily readings falling into the 3.5 to 5.5 range repeatedly. I am on a ketogenic diet (LCHF) and I think this helps with the low sugar levels.

Perhaps you could upload a graph from your spreadsheet for the Low Carb Succcess thread. It might inspire others to motivate themselves and bring their monsters into line too.
 
AndBreathe said:
Really well done on taking such positive steps to improve your health. If you continue as you has rercently begun, I think you can look forward to a lower number next time.

I really do empathise with your frustration about testing. At diagnosis, I was told there was no need to test, as I wouldn't understand them. This comment without any enquiry into my background or likely aptitudes), and to the very hub of it all. How can testing be unimportant when it it gives us such immediate feedback. being told only the HbA1c matters is bonkers. It's a bit like being told that when a builder is building a house, each brick doesn't matter, only the whole house. Like blood scores, the odd one being slightly off (as our bloods might be if we slip up on a food choice, or have a naughty treat), too many of those will impact the end result.

To be honest, when reviewing an HbA1c, I agree that periods like Christmas, birthdays, holidays and the like should be ignored, as these tend to be things that keep rolling round. A birthday arrives with great regularity, and every year, so that's just life, and one of life's ebbs and flows. Once you've got a handle on things, these special days will of course still happen, but maybe not as spectacularly, in terms of impacts on your bloods.

Keep testing. Please keep testing. It's such a crucial factor, in my view.

The reality, in my view, is the NHS can't afford to fund testing for everyone. I can appreciate that, but why not just have the honest conversation?

I'll get off my high horse now, via my soapbox.

Good luck with it all. it's suddenly very empowering, isn't it?
Click to expand...
Although test strips on scrip is an upfront expense, it is a false economy to withold them purely on cost. As a T2D on orals, I had reached the stage where it was being seriously mooted that I had to go on insulin. Now this would have meant I needed much more support from the HCP in terms of education, DCN overview, hospital appointments, GP visits, possible A&E admissions, maybe a pump. And on top of that even more strips than i require now. Its a no brainer, and my GP agrees.

I have reduced my GP visits to an annual review, one HbA1c a year, halved one of my meds, been discharged from DCN overview, and managing very nicely thank you.

Of course, I will need to take at least 1 glic a day to keep within NICE guidelines so GP can justify strip support officially, and I must be careful to avoid a RESOLVED ticket. However as an Oldvarty I am on scrips anyway due to age, so that is not a problem I can still get my Viagra if I need to!!!!!!!
 
Oldvatr said:
Although test strips on scrip is an upfront expense, it is a false economy to withold them purely on cost. As a T2D on orals, I had reached the stage where it was being seriously mooted that I had to go on insulin. Now this would have meant I needed much more support from the HCP in terms of education, DCN overview, hospital appointments, GP visits, possible A&E admissions, maybe a pump. And on top of that even more strips than i require now. Its a no brainer, and my GP agrees.

I have reduced my GP visits to an annual review, one HbA1c a year, halved one of my meds, been discharged from DCN overview, and managing very nicely thank you.

Of course, I will need to take at least 1 glic a day to keep within NICE guidelines so GP can justify strip support officially, and I must be careful to avoid a RESOLVED ticket. However as an Oldvarty I am on scrips anyway due to age, so that is not a problem I can still get my Viagra if I need to!!!!!!!
Click to expand...

I wholly appreciate the short-sightedness of T2s not testing, and the very likely false economy of that stance. My point was the approach adopted of blanking the patient's (in this case, me) willingness to be proactive in exploring their condition.

In your case, surely your GP would realistically only be able, under current NICE guidelines be able to justify ceasing your strips if you gave up driving? Surely, notwithstanding other factors, you have a duty to yourself, your passengers and other road users to test before driving?
 
AndBreathe said:
I wholly appreciate the short-sightedness of T2s not testing, and the very likely false economy of that stance. My point was the approach adopted of blanking the patient's (in this case, me) willingness to be proactive in exploring their condition.

In your case, surely your GP would realistically only be able, under current NICE guidelines be able to justify ceasing your strips if you gave up driving? Surely, notwithstanding other factors, you have a duty to yourself, your passengers and other road users to test before driving?
Click to expand...
Actually the Driving aspect you mention is not actually covered by NICE guidelines from what I remember. i think it is (a) dependant on using certain prescribed medications, and (b) evidence of potential hypo risk. Yes, I am a driver, but not on insulin so DVLA does not directly require me to test. But if I was on insulin, then I would also be given strips as per NICE. So it works one way, but not the other.

I think the other point you make is important. The older NICE guidelines definitely made the point that self monitoring could lead to confusion and anxiety in some patients, so should be discouraged. There is also a feeling that T2's on orals could not affect the outcome directly (i.e. could not 'bolus' for a meal, and their chances of a hypo were low anyway, so what point was there in promoting self monitoring.

As has been said in this thread, nowadays patients are told to control bgl by diet, but only find out at HbA1c time if that was successful. We know on this forum that self monitoring is actually essential to gaining control, but how many GP's follow this Forum? (Apart from SouthportGP, of course) I have responded to the UK.GOV Poll on this matter, but have had no response yet, but the level of response was very low when I voted.

Edit correction: As luck would have it the NICE guidelines got posted today, and here is the link
https://www.nice.org.uk/guidance/ng28
Seems I got it wrong. The latest edition does say the DVLA driving rules should be taken into consideration.
 
Last edited by a moderator:
a quick update...
The "control" continues to make me really feel as if I have put a face and body on this silly disease... I refer to it that way because it diminishes the power of the word diabetic... and, because, as my recent diet change and a bit more exercise has demonstrated, it's relatively easy to gain control over..
My average daily readings continue to go down..
june average 9.57
july average 8.28
august average (as of today) 7.42

for the last two weeks, I have cut my metformin down from three a day, to two a day... with no apparent differences to my sense of well-being... no spikes in BG.. and the daily measurements remain good and falling...
I am now eating - more or less - the same as I was six months ago - before I started watching the sugar and carbs. It's the carbs that really seems to have made the main difference.. I never did have much sugar.
I am due for my next HbA1c test in mid-September.. the last one, back in mid June, showed that my blood glucose had dropped from a high of 92 down to 79.. even though I had only been on the "new diet" for half of that time.. and also that the period included my UTI complication.
I fully expect a drop down to the low sixties from my next test.
 
I can't agree with this more.
I had GD in my last pg and was given dubious advice regarding eating carbs. I had a monitor, but the results were always high. It didn't go well but on the birth of my daughter I went back to "normal".
Recently I was told I was t2d. All the info I was given was "cut out sugar and sweets, eat leas carbs. Come back in 6 weeks for an hba1c."
I did a tonne of research, found this forum and went as low carb as possible. I monitored my BG with the kit I had from being pg. When I ran out of strips, I asked the gp surgery for more.
I was told in no uncertain terms by the practice nurse, that I don't need to test, I just need to eat properly, take my metformin like a good girl and come back for my Hba1c and to have my meds adjusted.
I took issue with this. The info I'd been given was minimal. I had no idea what my BG was doing without testing and I could really easily have spent the next however long, eating totally wrongly and damaging my health, before being treated retrospectively with metformin dose adjustments.
So I bought a new cheaper test kit and tested a lot! I ate really low carb and in 6 weeks I got my Hba1c down to non diabetic levels, and lost 2 stone.
Testing is really important. There's nothing more vital than taking control of your own health. I will stress this strongly to anyone I meet who is type 2.
In my opinion the nhs is really failing people on this.
 
ok - I was asked about uploading a copy of my progress.. and I don't really know how.. so I saved it as a PDF and I'm gonna hit the "upload a file" tab and see what happens...Well - it showed up.. let's try to open it...
maybe it's my browser, but all I get is the option to download it... which will, I'm sure, work fine... I promise there's no nasties in it...just DATA...
But it does show that one can maintain a pretty decent diet and still "get better"...
Hope it works/helps...
 

Attachments

ok - here's the update..
In the month of August, my daily readings were doing so well, that I mostly stopped taking my lunchtime metformin tablet... and just took the morning and evening ones.
And then, in September, I started taking them again because I knew that I would be getting a proper blood test (HbA1c) in September...
Well, I just had it..
In June, my HbA1c reading was 92... at the end of July, thanks to my being able to monitor and adjust my meals and MOST IMPORTANTLY my CARBS... it was down to 79 for a period which included the first month - when I wasn't taking my own daily readings.
Today, I got back the latest results.. covering the period from July to now.. and it was 47....

FOURTY FREAKIN" SEVEN....

The doctor/quack tried to tell me that it was the gliclazide tablet that had made all the difference, until I pointed put that I often forget to take that tablet and told her that i has switched to a low-carb diet...

she didn't know what to say... except... "well done"

Starting October first, I shall no longer take several readings every day and will not be keeping my food diary spreadsheet any longer. I shall have my bloods tested again in mid-December, before the Christmas pig-out... and then again in late january.. but, as I now have CONTROL and a way to check myself, I no longer fear the Christmas blow-up.. 'cos I now know how to bring it back down.

my average daily readings for the last four months are

june average 9.57
july daily average 8.28
august daily average 7.28
sept daily average 7.14

so - be of good cheer.. you CAN win.
 
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