Obsessive testing???

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rachelha

rachelha

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Relationship to Diabetes
Type 1
Hello

I am constantly being told by my consultant, DSN and psychiatrist that I test & record too much and would actually get better control if I tested less. I currently test about 8 -10 times per day. They believe that I am too obsessed with the small details, rather than looking at the overall trends.

I have managed to persuade them to leave me testing as I am whilst I am pregnant, as to cut down would just cause me more stress, not knowing what is going on. They seem determined to get me to cut down testing was I have given birth. I am currently meant to finally be getting my pump in November, but I am worried they will put this back. My psychiatrist described me going on the pump with my current testing regime as "a car crash waiting to happen".

I do suffer from anxiety for which I am taking medication, but not knowing what my blood sugar is just increases my anxiety. I think what they will want me to do is only to test about 5 times per day and to only keep a diary of carb intake and insulin amounts once per week. I dont see how this can work.

Has anybody else been accused of obsessive testing/recording.

Rx
 
hi rachel

Last time i went to my dsn and dietitian meeting i was told i was testing too much as well! i have been diagnosed for only 4 months and so have been testing 6-9 times a day to find out how foods are affecting me so i can get better control.....well the dietitian thinks this is too much and asked me to only test before meals!!!!! how am i supposed to know what the food is doing to my blood sugars if i do that exactly??!!

she said that when i test between meals and i get a high reading i panic....well yea because if i wasnt testing between meals then i would not see the high reading and therefore woudlnt know how to avoid it next time! Grrr!

So am just doing it my own way dont care what she says....i thought you were supposed to test more if you are pregnant anyway? to make sure control is tighter for the baby, or am i mistaken?
 
Rachel, I really don't think you are being obsessive. 8-10 is not testing too much. My GP thought 6 was too much, they just don't seem to get it! There are so many reasons why someone on insulin might need to test, let me count the ways:

Essential: waking, pre-meal and pre-bed. Before and after exercise. Before and during driving. Before and after hypos (before to see how much to treat and after to see if it worked!). When feeling hyper, to see what correction might be needed, and after to see if it worked. During the night, to check for overnight lows or highs.

Others: periodically after trying new foods, eating out, after/during a night out with a few drinks (we're only human and need to stay safe). Wasted tests when the strip failed or not enough blood.

I'm sure there are a multitude of other reasons why some people need to test. My understanding is that going on a pump means you need to do MORE testing, not less, so you can calibrate and work out basals, temp basals, dual/square waves, and so on, and so on...

My levels are fairly steady, and my diet fairly fixed, but some days I do 4 tests, others 8.

You should NOT be made to feel under pressure for managing your diabetes the way you choose. It's NOT fun to test a lot, we are aware that strips are expensive, but so are the possible consequences of NOT doing those tests.
 
It's about what works for you, and that will be a different number for different peopl at different times.
From my perspective it's not the number of tests that's important, it's what you're doing with the results. So long as you're using the data to inform on something (eg medication, future action, spotting trends etc) then I feel it's an important test. If it's testing for testing's sake then less so.
In my pre dafne days I was testing a lot more than I do now (pretty much hourly a lot of the time). My control has benefitted from cutting that down as at the time all I was doing was stressing at the results and micro managing them, meaning I was bouncing up and down all over the place as I reacted to each reading. It took fewer tests for me to take that step back and view my results as a whole which has steadied things for me.

That's not if course a suggestion that this is what others should do, only what worked for me which will likely be very different for other people. If the number of tests you're doing each day works for you then that's the strongest indication that it's the right amount for you.
 
I remember bringing this subject up before and feeling the wrath of many on here lol. But even I don't believe 8-10 times is excessive. Especially as you are anxious about your levels.
 
When I did a Carb counting course there was a girl there who when first diagnoses was using 100 strips in 2 days. She was just panicing all the time and testing. With reassurance she realised that this was too much and cut down. She wasn't having issues with hypos it was just a what if I am not OK thought that she was dealing with. She admitted to have been obsessed at the time.
 
estimate then test

One strategy I've found that could help to control anxiety is always to estimate blood glucose before testing. Although i do this to help for situations when I can't test, and I don't get anxious about blood glucose levels, as I have good hypo awareness and also feel a bit different if levels get above 12 (higher than I'd like, obviously), often it's pretty close, which indicates I could have relied on the estimate.
Personally, I test on rising (before breakfast) and at bedtime (to coincide with Humalin I doses), and before midday or evening meal, plus before / 30 mins after completing unusual exercise (don't always have to bother after usual exercise), before driving and every 2 hours on long journeys. So, anything from 3 to 8 per day. Routine days, like working, generally mean fewer tests.
 
Test test and test again.🙂 If it helps you to gain good control throughout pregnancy then what is the harm? I would also add that if your going on a pump - YOU WILL BE TESTING MORE!

If your team dont know that you test more on a pump - then i would be worried. Alex's record for testing is 27 times in one day. He was ill and it was a very hot day and bouncy castles involved etc. He wouldnt always test that much - but he does routinely do 11 or 12 tests per day. It is essential if you are pumping as things can go wrong very quickly. I think i would put the question back to your team and ask them is it about the cost? If yes, then it really shouldnt be an issue - you need to test to keep good control - especially in pregnancy! If its about the fact that they are worried that you are anxious - tell them that its your personal choice to test that often and your not complaining so why should they?

As for your phsychiatrist saying its a 'car crash waiting to happen' - what on earth is that all about? The problem with diabetes and physchiatry is that unless you are trained in diabetes care - how can you possibly advise whether going on a pump is beneficial or not? What do they know about pumps? What do they know about diabetes? The two professions are worlds apart and your phsychiatrist should stick to what he knows - and that isnt diabetes!

You should be proud of yourself for keeping your baby safe and helping to make sure that it has the best possible start in life - there are lots of people who just wouldnt bother and you need to be praised for your pro-active approach to pregnancy.🙂Bev
 
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I test about the same as you, and I'm on a pump. I like to know what's going on with my levels, and when you factor in testing before meals, before bed, before exercise etc, the amount of tests soon add up. There have been a couple of times when I've picked up a bad infusion site before it's hit the ketone stage because I test fairly often. I agree that you have to look at the trends, but you need enough of the small details to be able to do that!

i completely disagree with only filling in a carb/insulin diary once a week! How on earth would you know it's accurate if you're trying to remember what you did a week ago? On DAFNE we were encouraged to fill our diaries in regularly, and I think it's completely reasonable to do it once a day, while watching tv in the evening or something. I work on a computer a lot during the day, so I tend to just fill it in as I'm going along. In addition, I've just figured out that I'm having issues with rising on the third day of my site at the moment (probably due to the heat), and how would I have noticed that if I was only recording once a week?

Is there any way you can get a second opinion? It sounds difficult if your doctor, DSN and psychiatrist are all in agreement, but I've never had any issues with how often I test, so it is possible to find a doctor who feels the same! Is there anywhere else you can go in Edinburgh? Would it be possible to venture further afield?
 
I completely agree.

8 is not excessive at all. If testing for fbg, pre meals and before bed that allows just 4 tests for EVERYTHING else (including the DVLA's driving requirements which would be another 2 if you drive to and from work).

To suggest you fill in a daily food/dose diary only once a week is completely absurd.

If the advice is to hit bg targets after meals to reduce the risk of complications then to recommend you don't test after eating is insane. I've found out in the last few weeks that Weetabix (which I had always assumed fine since wholewheat/high fibre) causes a huge post-breakfast spike for me. I may as well be eating cake for its release pattern. There is no way to tell what a food will do for you without testing post meals.

On the other hand though... I know that some weeks I do feel that I am testing too much. Trying too hard. Banging in correction doses too early and having little hypo dips as a result.

Sometimes I have to say to myself, "relax, let's just see if this 12 comes down by itself". And sometimes that is exactly what happens. I avoid the rollercoaster.

Perhaps your care team sense that your testing is increasing your anxiety? If your tests are causing to worry, or to overreact to high readings then it is up to you to decide what to do about it. For example, if your breakfast is a consistent meal and you know how your body behaves with it, you might decide to only test fbg and pre-lunch (unless you felt hypo/were driving during the morning of course!).

A test is worth nothing if you don't use the information it gives you in some way (to learn, to adjust next time, to confirm something you believe to be the case).
 
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rachelha said:
Hello

I am constantly being told by my consultant, DSN and psychiatrist that I test & record too much and would actually get better control if I tested less. I currently test about 8 -10 times per day. They believe that I am too obsessed with the small details, rather than looking at the overall trends.

I have managed to persuade them to leave me testing as I am whilst I am pregnant, as to cut down would just cause me more stress, not knowing what is going on. They seem determined to get me to cut down testing was I have given birth. I am currently meant to finally be getting my pump in November, but I am worried they will put this back. My psychiatrist described me going on the pump with my current testing regime as "a car crash waiting to happen".

I do suffer from anxiety for which I am taking medication, but not knowing what my blood sugar is just increases my anxiety. I think what they will want me to do is only to test about 5 times per day and to only keep a diary of carb intake and insulin amounts once per week. I dont see how this can work.

Has anybody else been accused of obsessive testing/recording.

Rx
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I was, but just when I was pregnant! I took my bloods up to 15 times a day (depending) only recorded 5 of those (a day)in my diary everyweek when I seen the consultant 😱
Im not as bad now though 🙄
I think its an enotional time as it is carrying a baby, having diabetes at the same time is truly draining and hard work and anxiety filled so if it makes you feel better testing more, then I dont see the problem... Its better knowing everything is ok diabetes wise (when pregnant) than to not test and something going wrong with your levels :confused:

well thats my opinion anyway 😱 xxx
 
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I tested much more whilst pregnant but I had to to make sure my levels were between 4-7 as much as possible. I completely agree with lou being pregnant is stressful enough but having diabetes on top makes it worse. I used to test 2 hours post meal too but didn't write it down because I could have been accused of over testing as well. I would just ignore what they are saying and carry on as you are especially because you are not getting the growth scans that you need. Your team really do sound terrible. How long have you got left now? xx
 
rachelha said:
Hello

I am constantly being told by my consultant, DSN and psychiatrist that I test & record too much and would actually get better control if I tested less. I currently test about 8 -10 times per day. They believe that I am too obsessed with the small details, rather than looking at the overall trends.

I have managed to persuade them to leave me testing as I am whilst I am pregnant, as to cut down would just cause me more stress, not knowing what is going on. They seem determined to get me to cut down testing was I have given birth. I am currently meant to finally be getting my pump in November, but I am worried they will put this back. My psychiatrist described me going on the pump with my current testing regime as "a car crash waiting to happen".

I do suffer from anxiety for which I am taking medication, but not knowing what my blood sugar is just increases my anxiety. I think what they will want me to do is only to test about 5 times per day and to only keep a diary of carb intake and insulin amounts once per week. I dont see how this can work.

Has anybody else been accused of obsessive testing/recording.

Rx
Click to expand...

Hi Rachel,

For me I can test rather obsessively. I my personal best I think is twenty in a single day. On a bad day now that I am pumping fifteen tests isn't uncommon.

I don't think you're being obsessive. Some days I find that I need to test less, others, like today, I need to test more to see what's going on as I have been a little higher than I want to be. I'm currently sat at about 9.6 mmol/L before lunch and I want that down so I've been keeping a close eye on things. The cannula change I did this morning hasn't helped my cause but I have stayed below 10 mmol/L since 3am when I had a 10.2 which I corrected. I suppose today is one of those days when I want to keep a really close eye on things.

Given that you are pregnant, I don't think you're testing too much. Then again I am very much a layman. However, as I understand it, good control in pregnancy is vital and I only find that I can gain good control if I test alot to identify patterns and to make slight adjustments.

Hope all gets better,

Tom
 
Hi Rachel

Your not testing too much or being obsessive!! Your pregnant & need to know what's happening with your blood sugar levels.
Before i was pregnant i was testing 8-10 times a day (sometimes more & thats the minimum my pump team wanted me to test)
now i'm pregnant i test over 20 times a day my team want me to test.... i'm encouraged to test every hour & before i drive (my job means i drive alot i'm always in & out of my car) i'm also asked to test at least once during the night. I'm in daily contact with my dsn & i have to email her a diary of my blood sugars, carbs, insulin requirements etc & we make changes as needed. I've had a pattern of rising blood sugars over the last week which i've been able to pick up & alter my basal rates these changes happened really quickly & if i wasn't testing so often then i'd be running high for hours
Your doing the right thing for you & your baby 🙂
Take care
Chrissie xx
 
Hello all - thanks for your responses. Unfortunately the psychiatrist I am seeing is at the same hospital as the diabetic clinic and is the person that they refer people to so I can not just tell him to shut up as he knows nothing about diabetes.

I am not sure if I was clear about the record keeping bit, they are saying that I will be allowed to test 5/6 times a day, but only on one day of the week I am to keep a note of all my insulin injections and carbs. This makes no sense to me, apparently it is so that I see any changes week to week, but what if that day is not "normal" - more exercise/hypo etc. Then you could not compare the results with anything.

I just have a horrible feeling they are going to futher delay my pump start. I have already been waiting for it for 15 months.

Thanks for listening
Rx
 
That's shocking advise!! 😡 How can you look at patterns of what's happening if your only recording for 1 day per week, rather than daily? :confused:
I make changes in my basal rates if i have a pattern for 2 days in a row that i've had to use temp basals with etc
When i got my pump (3 1/2yrs ago, from a different pct to where i live now) they wanted me to test 10 times daily & was told that if i was unsure test test test.
I was really lucky that my team "lent" me a cgms for a few months (i've only just given it back) as i was having loads of hypo's & lost my awareness. I don't know how i would have coped if i couldn't test & look for patterns
If i can help in anyway just send me a message & keep testing at least you know what your doing & what is happening to your body xxx
 
Chrissie said:
That's shocking advise!! 😡 How can you look at patterns of what's happening if your only recording for 1 day per week, rather than daily? :confused:
I make changes in my basal rates if i have a pattern for 2 days in a row that i've had to use temp basals with etc
When i got my pump (3 1/2yrs ago, from a different pct to where i live now) they wanted me to test 10 times daily & was told that if i was unsure test test test.
I was really lucky that my team "lent" me a cgms for a few months (i've only just given it back) as i was having loads of hypo's & lost my awareness. I don't know how i would have coped if i couldn't test & look for patterns
If i can help in anyway just send me a message & keep testing at least you know what your doing & what is happening to your body xxx
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I asked my team about the possibility of a CGMS and they basically laughed at me, the only one they have does not show the results at the time you have to download them at the end of the week. I mentioned that I had been looking into getting one from elsewhere, and told me they did not think one would be good for me, as I would become even more obsessed. This is despite at the time losing alot of my hypo awareness and having a number of 1.x readings especially during the night.

I am basically at the moment just ignoring them completely and managing things my way. I get my last hba1c result on Monday. It had been creeping up slowly (but still under 7) I really hope this one is a bit lower again. With not getting growth scans either I really wonder what the point of the weekly appointments is. 😡
 
I'm testing 6-10 times a day and writing everything down at the moment. Even so, when I try to compare like-for-like I still struggle to find a similar day to use as a basis for an informed decision (is it a gym day? is it a weekend? what were levels like to start with, how hot is it? etc etc etc).

If you are only to write things down on one arbitrary day of the week I'm not sure how that is supposed to help when discussing those results.

Today is a classic for me.

I spiked to 12 about 2.5 hours after lunch (Humalog dragged its heels for some reason and failed to cope with a wholemeal sarnie). But, since I'd been to the gym this morning I knew I should leave it. True enough I've just tested and I've not only come down I've dipped slightly to 3.7.

Without lots of previous days results to go on (and experience obviously!) it would have been all too easy to panic into a correction dose.

To say you are not 'allowed' to record your activities is a nonsense and does not seem to treat you as a 'Partner in your own Care'. How can more information be problematic? How can it do anything but help you see what is going on? If you want to compare week-to-week just look at the same day the week before (but not the ones in between!)
 
everydayupsanddowns said:
I'm testing 6-10 times a day and writing everything down at the moment. Even so, when I try to compare like-for-like I still struggle to find a similar day to use as a basis for an informed decision (is it a gym day? is it a weekend? what were levels like to start with, how hot is it? etc etc etc).

If you are only to write things down on one arbitrary day of the week I'm not sure how that is supposed to help when discussing those results.

Today is a classic for me.

I spiked to 12 about 2.5 hours after lunch (Humalog dragged its heels for some reason and failed to cope with a wholemeal sarnie). But, since I'd been to the gym this morning I knew I should leave it. True enough I've just tested and I've not only come down I've dipped slightly to 3.7.

Without lots of previous days results to go on (and experience obviously!) it would have been all too easy to panic into a correction dose.

To say you are not 'allowed' to record your activities is a nonsense and does not seem to treat you as a 'Partner in your own Care'. How can more information be problematic? How can it do anything but help you see what is going on? If you want to compare week-to-week just look at the same day the week before (but not the ones in between!)
Click to expand...

I am so relieved to know that people see it the same as I do. I think the answer maybe 2 diaries/spreadsheets. One with the full record on it for me, and one for them with just what they want to see. How ridiculous is that though?
 
The advice they are giving you is shocking, IMHO. To treat you as if there is something wrong with you because you want to be an involved, motivated person in taking care of *your* diabetes is so unbelievably wrong. The fact that they denied you use of a CGMS when your hypos were so bad is appalling. I want to send my DSN up to your team to give them a piece of her mind. 😡

The whole idea of only recording results one day a week is so antiquated. It was what I was told to do when I was a kid and monitoring wasn't so common, and everyone was on two injections of mixtard. It's just ridiculous to suggest that it's a feasible way to manage your diabetes in this day and age.

I'll...umm...get off my soapbox now. *hugs*
 
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