Have you been told not to test your blood sugars?

[lucylocket61]

I believe in the acronym KISS

Keep
It
Simple
Stupid

Simple is not the same as misleading due to incomplete essential information. Especially around health matters.

 

[Jaylee]

Lovely people.

Can we not derail the topic with disagreements.

The moderator team thanks you all in advance.

 

[Angela64]

Hi everyone, When I was diagnosed as T2, they found it by accident during a hospital visit for something else. Then I was prescribed Metformin and began a journey of diet and weight loss. Was told that I didn't need to test blood sugars. Did really well, went from 3 to 2 tablets daily and my nurse was thrilled with my progress, as I was. A year on, I have slipped into bad habits, had my annual appointment and was told to test daily for a few weeks to monitor as I get back on track. Also have the addition of taking Gliclazide daily.

Testing daily is causing me huge anxiety. The machine is very sensitive to errors. I seem to waste strips almost every time because either there is not enough blood (have changed the depth of the lancet to hopefully help) or there is random error readings.

My morning fast readings 6.8, 8.5, 7.8, 7.9, 8.4 for the last few days. I feel quite sad about it all. Am confused about regular readings because this is so new. My nurse is calling me tomorrow and I will ask further questions so hopefully help with my anxiousness. I guess I am reaching out for support from you lovely people.

Although I am determined and will turn this around, I am feeling battered and every morning when it is time to test, I have immense dread. I feel like I am failing my body, and my body is failing me.

I can resonate with you. I was taken to hospital, emergency, my HBA1C was 138!
June 2920. Went low carb and got it down at first to 43, it’s now 51‍
Been a bit more relaxed with having carbs but still monitoring. My diabetes nurse enrolled me on a course for diabetes run by locally. This helped quite a bit.
Since July my levels have fluctuated similarly to yours. My brother died suddenly, he shouldn’t have, long story, so stress and upset in the mix. Been feeling all sorts AND suffering shoulder, head neck pain plus PAF which luckily hasn’t kicked off. I do have home baked bread but very limited and some other carbs but limited.
My nurse said I’d need to cut even those ‍ but my consultant endocrinologist said when I asked her for a carb level ‘you’ve got to live’!
The level you need to look at in the back of packets is total ‘carbohydrates’ not the sugar level, carbs turn into sugar. I was told this by the diabetes tutor on the course, the course was very useful. Maybe ask at your surgery.
Anxieties will increase the levels ‍
My GP has said to me to stop testing as he thinking it making me anxious but not knowing the levels I can’t adjust my diet‍
So, I need to try and address my anxiety and cope with grief‍
I swim and water exercise 3x a week, I know I need to do more exercise. Drinking enough water is also a must.

 

[lucylocket61]

PAF

What does this stand for please?

 

[Riva_Roxaban]

What does this stand for please?

Several versions of PAF, I like these ones.

Pakistan Air Force, Patent Applied For.

 

[Pipp]

I think those wondering what PAF is will find in the post by @Angela64, it refers to a heart condition (paroxysmal atrial fibrillation) . please forgive me if I am mistaken.

 

[Pipp]

I would also echo my colleague, Jaylee, and ask for kindness and respect to be shown to each other, so as not to derail the thread. Or cause upset or distress.

 

[Member559176]

PAF are also my initials.

 

[lucylocket61]

PAF are also my initials.

interesting - but it doesnt help with the question I asked @Angela64

 

[Angela64]

Several versions of PAF, I like these ones.

Pakistan Air Force, Patent Applied For.

Peripheral Atrial Fibrillation

 

[whyme_again]

I am in a similar situation, my blood sugar's have been persistently high since January but at first. I put it down to steroids as was on increased dosage. However, normally the levels reduce and return to normal within s few days of going back to my maintenance dosage. Not this time, this time it's remained high and I've been feeling really ill.

So few months ago, I contacted my GP surgery after having terrible time whilst out, vision going funny, shaking, feeling like I hadn't eaten at all, tingling every where etc, asking if the GP could call me the next day. The receptionist said no, you need to speak to them today its dangerous for them to be at that level. I thought it was s hypo but turns out was hyper...14.9!

So, GP rings me...I couldn't believe what she said, 'you are testing your blood sugar's too often (I was told to do in waking, before meals and bedtime plus if any symptoms of hypos/hypers in between by the pharmacy technician). To me, that was not as bad as had been before when had to test as above but also 2 hours after each meal ..was absolute nightmare.

So, couldn't understand her logic, as it was them that told me to test each day etc. She then said 'you are testing too much, it's why your blood sugar's are raised. You are testing and getting anxious, stop testing and things will be ok'

So, I stopped testing as she said and tried to deal with my symptoms without knowing if they were hypo or hyper (unfortunately, my symptoms appear to be the same regardless of the type).

Que hospital admission for elective surgery, all hell breaks out. Not only do they register that I'm having frequent hypers but also hypos every day. But confusing though, as it appears contrary to my understanding of blood sugar levels, being in low 4's is considered hypo as well...I always thought it was below 4...which means I've been having hypos for a while if that's the case as my eyesight gets issues once blood sugar drops to 4.2.

Anyway, apart from one at 4.1, the rest were in the higher 3's and the nurses appeared to be taking all this very seriously. Before some meals, my readings were well over 10, some as high as towards 20.

I can only presume that it was the change around of medication that was creating the issues.

Once home, things were still happening, still having both forms and feeling so unwell as was falling about like was drunk, as was happening frequently, I decided to talk to GP and last week rang the surgery only to find it had a training day. I just couldn't be bothered to contact 111 as I didn't want to go back to hospital again, so thought I'd wait and see how things were the next day and I managed to get a morning reading of 6.1, so thought all was getting back to normal.

How wrong I was, a hypo the next morning while alone. I had a banana, a rice crispie bar plus another banana, a tea and coz still feeling ill, sone juice. 20 mins later had gone from 3.6 to 6.1.

My son went to the surgery on the Monday, earliest appointment was next week as apparently, a lot of diabetic patients with issues. However, come Tuesday and another hypo this time, whilst talking to someone on the phone. I just felt really disconnected like weird, started with the AF playing up, then getting confused and struggling to concentrate and understand and maintain the conversation, tingling in my limbs and lips,, eyes going blurred and really felt really ill, just had to end the call. My son got me jelly sweets, fruit juice and then had toast and jam.

I decided would ring the ACP Dr this tine as my son was unsuccessful in getting an earlier appointment. She immediately emailed the GP and I got a call back. This GP told me that I should have been testing at regular intervals, but she also thought the glizitine (don't know how to spell it) medication could be causing the issue so I've stopped that and despite all the blood tests already done, I have to have another one next week to see what's going on. The good thing is that I am treating the hypos correctly. Guess it's the hypers that are the problem ones.

I did like you were told, stopped testing, so I had no idea what I was trying to treat, hypo or hyper and suffered as a result. This issue has really cemented the poor relationship that has now appeared between my named GP and myself over the last few years when I'm treated like I'm a nuisance rather than a patient with worrying symptoms. I'd I hadn't been hospitalised when I was, things would have continued I'm guessing till it got so bad and ended up in A and E, probably being classed as a patient who didn't take her condition seriously.

Perhaps I'm being paranoid.

 

[Angela64]

OMG! I’ve been away on a residential course for a week. I get anxious driving distances. I knew the food would be like school dinners, all carb high and not so much veg‍ I’d taken a cool box with some cheese and milk. I could take boiled eggs for later in the day to swap. Levels had increased but not as high as yours but……
After posting this quest and reading answers, I decided to ignore the Dr & nurse, I’m only testing twice a day ‍
Back home levels gone down a bit, but difficult to get proper informed information you can rely on.
Sorry for your problems, terrible. I’ve an appointment with a nutritionist soon see What she says.

 

[Angela64]

I am in a similar situation, my blood sugar's have been persistently high since January but at first. I put it down to steroids as was on increased dosage. However, normally the levels reduce and return to normal within s few days of going back to my maintenance dosage. Not this time, this time it's remained high and I've been feeling really ill.

So few months ago, I contacted my GP surgery after having terrible time whilst out, vision going funny, shaking, feeling like I hadn't eaten at all, tingling every where etc, asking if the GP could call me the next day. The receptionist said no, you need to speak to them today its dangerous for them to be at that level. I thought it was s hypo but turns out was hyper...14.9!

So, GP rings me...I couldn't believe what she said, 'you are testing your blood sugar's too often (I was told to do in waking, before meals and bedtime plus if any symptoms of hypos/hypers in between by the pharmacy technician). To me, that was not as bad as had been before when had to test as above but also 2 hours after each meal ..was absolute nightmare.

So, couldn't understand her logic, as it was them that told me to test each day etc. She then said 'you are testing too much, it's why your blood sugar's are raised. You are testing and getting anxious, stop testing and things will be ok'

So, I stopped testing as she said and tried to deal with my symptoms without knowing if they were hypo or hyper (unfortunately, my symptoms appear to be the same regardless of the type).

Que hospital admission for elective surgery, all hell breaks out. Not only do they register that I'm having frequent hypers but also hypos every day. But confusing though, as it appears contrary to my understanding of blood sugar levels, being in low 4's is considered hypo as well...I always thought it was below 4...which means I've been having hypos for a while if that's the case as my eyesight gets issues once blood sugar drops to 4.2.

Anyway, apart from one at 4.1, the rest were in the higher 3's and the nurses appeared to be taking all this very seriously. Before some meals, my readings were well over 10, some as high as towards 20.

I can only presume that it was the change around of medication that was creating the issues.

Once home, things were still happening, still having both forms and feeling so unwell as was falling about like was drunk, as was happening frequently, I decided to talk to GP and last week rang the surgery only to find it had a training day. I just couldn't be bothered to contact 111 as I didn't want to go back to hospital again, so thought I'd wait and see how things were the next day and I managed to get a morning reading of 6.1, so thought all was getting back to normal.

How wrong I was, a hypo the next morning while alone. I had a banana, a rice crispie bar plus another banana, a tea and coz still feeling ill, sone juice. 20 mins later had gone from 3.6 to 6.1.

My son went to the surgery on the Monday, earliest appointment was next week as apparently, a lot of diabetic patients with issues. However, come Tuesday and another hypo this time, whilst talking to someone on the phone. I just felt really disconnected like weird, started with the AF playing up, then getting confused and struggling to concentrate and understand and maintain the conversation, tingling in my limbs and lips,, eyes going blurred and really felt really ill, just had to end the call. My son got me jelly sweets, fruit juice and then had toast and jam.

I decided would ring the ACP Dr this tine as my son was unsuccessful in getting an earlier appointment. She immediately emailed the GP and I got a call back. This GP told me that I should have been testing at regular intervals, but she also thought the glizitine (don't know how to spell it) medication could be causing the issue so I've stopped that and despite all the blood tests already done, I have to have another one next week to see what's going on. The good thing is that I am treating the hypos correctly. Guess it's the hypers that are the problem ones.

I did like you were told, stopped testing, so I had no idea what I was trying to treat, hypo or hyper and suffered as a result. This issue has really cemented the poor relationship that has now appeared between my named GP and myself over the last few years when I'm treated like I'm a nuisance rather than a patient with worrying symptoms. I'd I hadn't been hospitalised when I was, things would have continued I'm guessing till it got so bad and ended up in A and E, probably being classed as a patient who didn't take her condition seriously.

Perhaps I'm being paranoid.

Do not go down the ‘paranoid’ route! This is what my GP was insinuating These people need to have it to really know what it’s like!

 

[Keethb]

Highlights part of the issue: not every nurse that you see in a GP surgery is qualified as a Specialist Diabetes Nurse. Fewer and fewer are qualified to a high enough degree. I'm afraid a 2 day course doesn't qualify a nurse as a Specialist......and these are the people who are meant to advise us!

 

[Keethb]

I have also been told testing is unnecessary for type 2.

I was told that I will have blood tests so many times a year to check my blood sugar I was advised not to get a monitor

 

[Robo42]

I have been told over the years not to test myself & only rely on 6 monthly HbA1C blood tests. But originally when diagnosed type2 I tested pre/post meals & logged everything I ate, this gave me a good idea of what I could eat & what

affected me. No Carbs for breakfast but I handled some better in the evening, checking help me plan meals, if I had taken notice of dietician I would not have been diet controlled for over 10 years.

Last few years the Hba1C test has been rather less than yearly. I used to review with a good Diabetic nurse but not seen for 3 years now. Recently my review was a blood test followed by phone call with a clinical pharmacist.

Basically I would say, find a blood tester that has test slips a reasonable price and at least when first diagnosed test yourself pre meal & 2 hours after to make a note of effect of blood sugar. Really does give a good idea on managing meals.

Funny that I used to get ‘test strips’ on prescription then told not to test & then refused to give on prescription. Yes the Hba1C is the medical guide for the average sugar level, but Drs just keep giving more medications to manage numbers.

Know your food & many can be diet controlled with work.

 

[Diablo T2]

I got some strips myself when I suspected diabetes and just before formally diagnosis. A few months later when I saw the hospital consultant for a periodic review I went prepared and appraised the consultant about how my blood glucose was trending. This was all noted down by the consultant (and later in the report) but then at the end to my surprise the consultant said I do not need to test as I was not at risk of hypos (my only medication at the time being metformin). The consultant knew I was testing for the purpose of seeing how I was managing with the dietary and other changes I had made (i.e. getting my high blood glucose down from a high level), and not because I was worried about hypos (i.e. a low blood glucose level). This statement that I did not need to test was all very peculiar to me as I paid for my own strips and was making real progress partly because I tested. If I had been getting the strips from the heath service then I could have understood even if I disagreed with the policy. But it was my money. Needless to say I continued to test.

 

[MrsA2]

I got some strips myself when I suspected diabetes and just before formally diagnosis. A few months later when I saw the hospital consultant for a periodic review I went prepared and appraised the consultant about how my blood glucose was trending. This was all noted down by the consultant (and later in the report) but then at the end to my surprise the consultant said I do not need to test as I was not at risk of hypos (my only medication at the time being metformin). The consultant knew I was testing for the purpose of seeing how I was managing with the dietary and other changes I had made (i.e. getting my high blood glucose down from a high level), and not because I was worried about hypos (i.e. a low blood glucose level). This statement that I did not need to test was all very peculiar to me as I paid for my own strips and was making real progress partly because I tested. If I had been getting the strips from the heath service then I could have understood even if I disagreed with the policy. But it was my money. Needless to say I continued to test.

In a way he's right. There is no NEED, no immediate life saving necessity for T 2s to test.
We do it because we want to, we choose to, it's informative, helpful and leads to healthier lives.

 

[filly]

I personally think it is pretty essential. Especially in the early days. You can tell what it good or not. Last night proved that when I ate a very small fresh fig before bed! 9.7 this morning. So, if I hadn't tested maybe would have carried on today or another day. I won't now. Smacked hands as already knew I was bad with fruit. Also friend gave me 2 jars of homemade sauce. Defo can't eat those. So on a general basis it is a good idea as I have found over the last 4 months. I shall continue. Said friend is a specialist and said it doesn't help! Oh yes it does. Carry on.

 

[Outlier]

As we often say; "Knowledge is power". Some medics like us to be involved with our own health, others seem to prefer the mystery of them knowing and us being kept ignorant. It is probably an ego problem.