Nightmare diabetes appointment

[Ian DP]

It does seem that NHS staff are trained specifically to look out for lows and question your awareness.
I am not on insulin yet, but twice now have been interrogated on lows.
My DSN questioned my low hba1c..... Why do you want it to be that low (5.2%)... She said there was no point in having that low a hba1c.... I quickly gave 5 reasons why I wanted a low hba1c, and to her credit she accepted them.
My GP when looking at my 3 month graph of my BG readings went straight to a couple of 3.8 lows..... And asked if i have any hypo awareness? Taken by surprise I said no...... I will be better prepared next time. I had a 3.2 once, immediately did another test on my other hand and it was 3.9...... Likewise a couple of times I have had a surprising high and immediately did another test on other hand and it was 2 point lower....... So worth double checking.

I am beginning to feel that my nurses and dieticians are learning more from me than I am from them.
But so far I have been very fortunate in that all have ended up supporting me and not fighting me..... Mainly I believe because one of the diabetic nurses in the dept (that I have yet to see) is a diabetic and on a LCHF diet.

I spent half an hour with the diabetic dietician a couple of months ago. I was very apprehensive about it. She asked me to detail my diet, which I did (LCHF with 80% fat 5% carb). She said it clearly is working for me and the only thing she recommended I change was the coconut oil in the bullet proof coffee, she said all butter would be better as it has more vitamins in it.... I still take coconut oil!!!!, but only after a Google check.

When you have been trolling through all the forum posts on this site, gaining experience and knowledge on a daily basis, maybe it is not surprising that many are more knowledgable than NHS staff who are all trained in line with NHS policy, including a one third carb diet.

 

[elaine77]

It's interesting that you have hypos Ian when u are not on any medication. I thought it was impossible! This gives me even more ammunition in my fight with the DVLA!!

 

[noblehead]

...And just because you listened does not mean you have to take it on board

Absolutely right Conrad

 

[jack412]

She never said anything about them saying her hba1c was too low, just a very small percentage of readings.

I was just commenting on how blind they can be, they have their leaflet and it's Gold

 

[noblehead]

Noblehead, if Smidge is raising concerns about high spikes and they're banging on about lows I don't see how listening to THEM will be helpful when they were not prepared to listen to Smidge. Also, dieticians are not doctors and so I would rather listen to a diabetic consultant than a dietician, which is what was done.

Just my opinion.

Reading Smidges post you will that she's having some big swings from high to lows and is obviously concerned enough to ask for help from her HCP's, dietitians are not consultants your quite right, but some (not all) dietitians are DAFNE trained and may have been able to help with the wide fluctuations in her bg levels, who knows..........

Listening to advice is good, and as Conrad says earlier you don't have to take that advice on board if you don't want to, but I'm sure we all learn something new when it comes to living with diabetes, whether that is reading this forum, reading a book or researching the net, or picking up new information from our HCP's,

I think Smidge and the Dietitian got off on the wrong note and it all went downhill from there.

 

[AndBreathe]

It's interesting that you have hypos Ian when u are not on any medication. I thought it was impossible! This gives me even more ammunition in my fight with the DVLA!!

I think much depends on how you categorise or define a hypo for someone not taking any meds. I also take nothing, and my current 7 and 14 day averages are 4.1, with the 30 and 90 days running at 4.2, so I clearly have lots of readings under 4. Indeed my fasting 7 day average is currently 3.9 and my pre-dinner for 7, 14 and 30 days is 3.9 (rising to 4.0 for 90 days). I feel absolutely fine down to around 3.2 and as I consider by organs to have recovered since diagnosis, I don't consider those to by true hypos When I go under 3.5, I'm usually hungry, so I just crack on with whatever meal is due.

I'm clearly not a T1, or any of the T1 variants, and I can understand the need for T1s to be very vigilant, but to have that hypo label applied at a set number - right across the board, for everyone, is unhelpful. For T2s and those not on potentially hypo inducing I believe there should be different approach.

Clearly anyone experiencing a low number and feeling "off" should act accordingly. I'm not advocating anyone ignoring hypos.

 

[Ian DP]

It's interesting that you have hypos Ian when u are not on any medication. I thought it was impossible! This gives me even more ammunition in my fight with the DVLA!!

Not sure that 3.8 on a meter should necessarily be seen as a low. With a 15% allowable inaccuracy a 3.8 reading could be 4.4.... But it could be 3.2!!!!.... So best to do another another test.

One of my 3.8s was at 3:00am. I don't often check my BG in the middle of the night. It was very low pre breakfast too, 4.1.

I think many non diabetics get BG lows, especially after exercise and alcohol.

 

[tim2000s]

One of the reasons that I state a target range of 4-8mmol/l is that it keeps HCPs happy. The other is that I function properly at BS levels under 4 mmol/l , in spite of physically knowing that my blood sugar is in that range (principally due to the LCHF diet) but few HCPs will accept that this is possible, let alone condone it.

Having said that, the US DCCT study showed that consistent Hba1C levels for T1 diabetics over a long period of time that are < 6.5% versus those that are between 6.5% and 7% are statistically insignificant in terms of the onset of complications, so it does beg the question as to whether an extremely tight control is worthwhile?

 

[elaine77]

Having said that, the US DCCT study showed that consistent Hba1C levels for T1 diabetics over a long period of time that are < 6.5% versus those that are between 6.5% and 7% are statistically insignificant in terms of the onset of complications, so it does beg the question as to whether an extremely tight control is worthwhile?

I agree I think the HCPs have no idea what causes some people to have huge complications and some to have very few. I think it's completely different for every person, as is diabetes.

My optician who does my eye tests actually said to me "you will need glasses when you are 40 as you are diabetic" despite having no ophalmological evidence to suggest anything was wrong with my vision!! It's not helpful and quite upsetting!!

 

[jack412]

it seems that A1c around 5.5 may be best for T2's and CVD, but bad hypo's would probably be worse for T1's

www.youtube.com/watch?v=9BFRi-nH1v8




Figure 2. Adjusted Hazard Ratios for Self-Reported Diagnosed Diabetes and Coronary Heart Disease, Ischemic Stroke, and Death from Any Cause, According to the Baseline Glycated Hemoglobin Value.

The hazard ratios are per each absolute increase of 1 percentage point in the glycated hemoglobin value at baseline. The shaded area is the 95% confidence interval from the restricted-cubic-spline model. Both models are centered at the median (5.4%) and the plot was truncated at the 2.5th and 97.5th percentiles of glycated hemoglobin (4.7% and 6.8%, respectively). The hazard ratios were adjusted for age, sex, and race (black or white), low-density and high-density cholesterol levels, log-transformed triglyceride level, body-mass index, waist-to-hip ratio, hypertension (yes or no), family history of diabetes (yes or no), education (less than high school, high school or equivalent, or college or above), alcohol use (currently, formerly, or never), physical-activity index score, and smoking status (current smoker, former smoker, or never smoked). The data are shown on a natural-log scale.

 

[AndBreathe]

One of the reasons that I state a target range of 4-8mmol/l is that it keeps HCPs happy. The other is that I function properly at BS levels under 4 mmol/l , in spite of physically knowing that my blood sugar is in that range (principally due to the LCHF diet) but few HCPs will accept that this is possible, let alone condone it.

Having said that, the US DCCT study showed that consistent Hba1C levels for T1 diabetics over a long period of time that are < 6.5% versus those that are between 6.5% and 7% are statistically insignificant in terms of the onset of complications, so it does beg the question as to whether an extremely tight control is worthwhile?

There was a bit of discussion of this very thing yesterday, here: http://www.diabetes.co.uk/forum/thr...ing-blood-glucose-in-a-morning.23574/page-499

 

[phoenix]

Here's me March 10 2006 http://www.diabetenet.com/index.php?Rubrique=111 sorry it's in French. Hba1c 5.1% hypos mainly when exercising , mainly in the threes but just had one of 31(1.7mmol/l )
The doctor on the' forum 'I wrote to thought my levels I mentioned were dangerously low and I was 'too well controlled'. You can read his advice which involved increasing low G1 carbs and decreasing insulin
Fear of higher levels, probably induced by opinions on forums meant I didn't really take his advice on board fully. The level at which I sensed hypos gradually descended I still felt fine and felt my cognitive function was fine( I 'proved it' showing how well I could do on a reaction game when hypo) Eventually there came a time when even I realised that I was going too low, too often (no not caused by a serious hypo but having two 'los' on my meter within a few days, the second as I got off my bike made me really think of the possible consequences
Now my HbA1c is a bit higher but I know I'm going hypo at around 4. I have no evidence but I suspect my profile is flatter also. (libre has 1% below , 90% within and 9% above target 70-144.)

 

[Robinredbreast]

Even though my recent diabetes hospital appointment was good, Mr T, still seems to disregard the high's and is only interested in the lows, "how low, how many per week" as to me, it's the highs that concern me the most as I do feel both are are equal, regarding striving for good control.
About a couple of years ago I asked for a half unit pen ( I'm on NovoRapid) and I got one straight away. It has been a godsend because, for me, that 1/2 unit is invaluable. My granddaughter has a 1/2 unit pen, one click and it administers the Insulin in a second

RRB

 

[noblehead]

Even though my recent diabetes hospital appointment was good, Mr T, still seems to disregard the high's and is only interested in the lows, "how low, how many per week" as to me, it's the highs that concern me the most as I feel both are are equal, regarding striving for good control.
About a couple oif years ago I asked for a half unit pen ( I'm on NovoRapid) and I got one straight away. It has been a godsend because, for me, that 1/2 unit is invaluable. My granddaughter has a 1/2 unit pen, one click and it administers the Insulin in a second

RRB

Have to agree, the half unit pens are invaluable, they help to fine-tune bg levels.

Most consultants are pre-occupied by hypo's and want to reduce them for the sake of the patients, running low bg levels over time will undoubtedly lead to hypo unawareness issues and this is not something anyone would want when injecting insulin, hence why they want us to keep them to a minimum.

 

[CollieBoy]

Nevertheless, it is frustrating for the patient, when the consultant (or other HCP)is over preoccupied with hypos which are not actual problems, merely theoretical.

 

[Robinredbreast]

Yes noblehead I do understand about hypo unawareness and trying to keep our BS at a good level. It does seem that when 'highs' are mentioned, it's dismissed quickly by the consultant. Whereas I would like him to explain, but his time is precious and what is important for me, isn't always important to the medical profession, I mean it is a diabetes habit that I seem to have.

RRB

 

[noblehead]

Yes noblehead I do understand about hypo unawareness and trying to keep our BS at a good level. It does seem that when 'highs' are mentioned, it's dismissed quickly by the consultant. Whereas I would like him to explain, but his time is precious and what is important for me, isn't always important to the medical profession, I mean it is a diabetes habit that I seem to have.

RRB

I know your aware of hypo unawareness RRB, I was just trying to explain why our diabetes teams are so focussed on reducing low bg levels in insulin dependant diabetics, it's a shame that yours doesn't seem to be interested in your higher levels, both are important and need to be addressed/ controlled.

 

[LucySW]

It
My GP when looking at my 3 month graph of my BG readings went straight to a couple of 3.8 lows..... And asked if i have any hypo awareness? Taken by surprise I said no...... I will be better prepared next time. I had a 3.2 once, immediately did another test on my other hand and it was 3.9...... Likewise a couple of times I have had a surprising high and immediately did another test on other hand and it was 2 point lower....... So worth double checking.

Ian, that's nonsense! You CANNOT hypo when not taking any drugs. No insulin has passed your .. well, not lips, nor anything else. It just shows they are looking at you as a typical Type 1. Don't fall for it!

 

[LucySW]

I think much depends on how you categorise or define a hypo for someone not taking any meds. I also take nothing, and my current 7 and 14 day averages are 4.1, with the 30 and 90 days running at 4.2, so I clearly have lots of readings under 4. Indeed my fasting 7 day average is currently 3.9 and my pre-dinner for 7, 14 and 30 days is 3.9 (rising to 4.0 for 90 days). I feel absolutely fine down to around 3.2 and as I consider by organs to have recovered since diagnosis, I don't consider those to by true hypos When I go under 3.5, I'm usually hungry, so I just crack on with whatever meal is due.

I'm clearly not a T1, or any of the T1 variants, and I can understand the need for T1s to be very vigilant, but to have that hypo label applied at a set number - right across the board, for everyone, is unhelpful. For T2s and those not on potentially hypo inducing I believe there should be different approach.

Clearly anyone experiencing a low number and feeling "off" should act accordingly. I'm not advocating anyone ignoring hypos.

AndBreathe, if you look at the Christiansen presentation on Jenny Ruhl's Blood Sugar 101 page, those numbers are just perfectly normal blood sugars. That's what normal blood sugars are. The body isn't following a rulebook (as I understand it). Those include the perfectly normal blood sugars that we all long for. - And maybe, if you like to try Dr B, maybe can even get back ourselves.

 

[LucySW]

One of my 3.8s was at 3:00am. I don't often check my BG in the middle of the night. It was very low pre breakfast too, 4.1.

I think many non diabetics get BG lows, especially after exercise and alcohol.

Yes, that time of the night is when all the body's systems are at their lowest. It's when people die, apparently. Ask a doctor or nurse!

non-diabetics getting lows after booze: have you seen TimS's screenshot from the FB Libre group page? Tim, can you post it again? I'm technically incompetent - um, if you see what I mean.

One of the reasons that I state a target range of 4-8mmol/l is that it keeps HCPs happy. The other is that I function properly at BS levels under 4 mmol/l , in spite of physically knowing that my blood sugar is in that range (principally due to the LCHF diet) but few HCPs will accept that this is possible, let alone condone it.

Having said that, the US DCCT study showed that consistent Hba1C levels for T1 diabetics over a long period of time that are < 6.5% versus those that are between 6.5% and 7% are statistically insignificant in terms of the onset of complications, so it does beg the question as to whether an extremely tight control is worthwhile?

Tim, if you read around more widely you see lots of evidence about complications starting at a much lower level. Personally, I feel that only truly normal blood sugars will reverse any complications I've already sustained - and I just notice general slight deteriorations in sight, coordination etc. They only check for eyes and feet. There is so much more ...