Anyone else feel their Doctor(s) let them down ?

Member496333 · Jan 17, 2019

garyb888 said:
Jim:
So are you saying that if you're not carrying excess protein, and don't have excess glycogen in the liver, then 1) the dawn phenomenon does not happen, or is reduced, and 2) stored body fat doesn't get used in that case to fuel the dawn phenomenon?

And thanks for the detailed explanation in your post.

I believe that the body will be less inclined to turn to gluconeogenesis if it is able to efficiently burn ketones instead. GNG is apparently largely demand driven, but one way or the other excess protein has to be excreted or reconstructed into glucose. It cannot be stored directly as fat. In the event that some portion of the amino acids are not used for cell repair and growth, and not excreted, they must first be converted into glucose and either used for fuel or then converted to fat. It’s all sliding scales, not absolutes, but in my experience you can tip the scales in your favour armed with knowledge, and practical experience of those principles on your own body.

Anyway this is all drifting terribly off topic, and the last time I rambled on about protein I got a ticking off...

Fruitella · Jan 17, 2019

Christoforo said:
2 years ago I requested a blood test which included HbA1c. The normal practice after blood tests is to call the surgery for results – which I did – and was told by the receptionist – everything was normal. For a few years I have kept all blood test results after being diagnosed with fatty liver and subsequently requested a copy of my blood test results. When I arrived home to read through the test results all the other blood test results were fine but I was not happy to read the lab comment “High risk of developing DM suggest repeat in 1 year” against a reading 0f 42 mmol/mol for the HbA1c test – especially after being told everything was normal. I met with a doctor at the practice a couple of weeks later and brought this up – i.e. that receptionists or whoever should be better trained to properly read and flag up anything out of the ordinary in lab results and that any mention of “high risk” must surely be flagged up for immediate preventative action. For me, this was tantamount to negligence. However, not a very positive response from the doctor and, amazingly, no proper advice on how to proceed, dietary recommendations etc. It just looked to me as though “we’ll wait until he gets diabetes” then add him to the statistics. Then the adage is trotted out – You can sell more “cures” than you can for “prevention”. Reading through the comments on this and other sites, shares in the makers of Metformin must be on a never ending roll! While searching on line for what could be done, I found an Australian specialist who confirmed that diabetes is reversible, primarily through diet, although I guess it depends on the extent at the time it is diagnosed. I have been vegetarian for a few years now, nearly vegan more recently and my last two results have been 39mmol/mol, but will closely monitor future test results to hopefully stay out of the woods. Incidentally, another local surgery charges £5 for a copy of blood test results and, when challenged about this extortion, said they can charge whatever they like!

Hi, if in the UK then you can also get a copy of test results fron the hospital that the blood is sent to for testing. Useful if the gp surgery is dragging its feet.

garyb888 · Jan 17, 2019

Jim Lahey said:
It’s all sliding scales, not absolutes, but in my experience you can tip the scales in your favour armed with knowledge, and practical experience of those principles on your own body.

Well said, and thank you very much!

Alison Campbell · Jan 17, 2019

Patrick66 said:
I think my hba1c will be about 7.2 when they test me next week. In fact I expect it will be higher...so no operation for me. We will see. I simply haven't had time to turn it around.

I don't know where it comes from but I read on here that although the HBA1C covers 3 months, it is weighted toward the last few weeks, you maybe presently pleasantly surprised.

sbnz · Jan 17, 2019

Robinredbreast said:
Hi, my new GP ( 2 years ago) whom I had never met, changed my diabetes type from Type 1, to ' late onset type 2' this was said to me at my diabetes check up with DSN at my surgery and she said my GP was very knowledgeable about diabetes and then nurse said type 1 only happens in children and adolescents !!
My latest results weren't great last week, so I rang the diabetes nurses at my hospital asking for help and advice and 9 days later still nothing. I wonder what the point is at times and feeling worthless and invisible.
30 years type 1 and it's hard going

Wow - did I read your message right? You were diagnosed over 30 years ago (so probably quite young then?) with type 1 and now they are 're'- diagnosing you as late-onset type 2?...has your Doc completely missed reading your diagnosis of 30 years ago and casework since? And isn't type 2 (traditionally) a late-onset condition - why point it out? Sounds like your Dr and team are a confused group? Totally get your knocking head against wall emoticon. Maybe get the emoticon enlarged and wear it printed on a tshirt next time you see them? Sorry that probably not helpful. Oh b###er it - do it anyway.

Patrick66 · Jan 17, 2019

Alison Campbell said:
I don't know where it comes from but I read on here that although the HBA1C covers 3 months, it is weighted toward the last few weeks, you maybe presently pleasantly surprised.

Live in hope, die in despair....

Robin101 · Jan 17, 2019

Now is it me being cynical or do I suspect that funding initiatives for Type 2, 'under the spotlight' lifestyle changes may be different to those for Type 1 ' genetic' non-life style linked? I have to suspect that reviews over 30 years couldn't have stayed as T1 and now suddenly change without some sort of reason?

sbnz · Jan 17, 2019

chris66 said:
Thanks, had thought it was just me, reading through this forum it seems obvious there are plenty in the same boat!

It seems to be an issue all over the place. I'm a type 1 in New Zealand. Some regional diabetes clinics here seem to get good reviews from their patients re their efforts and understanding of the conditions and best managements but a lot fall short - including mine in many ways. Medical care in many ways suffers from its status as a career path - yes Doctors and Nurses etc deserve respect for their efforts in training and application - however they in our government systems are largely entrusted with our healthcare, even when it's acceptable for them to no longer update their knowledge and over and above those that challenge that status quo. Basically it's up to individuals to gather their info, team up with others with similar needs and call for change. The internet can be a huge aid in this self-empowerment - take the complaint to a forum that aims to transform it. Create that forum. No apologies for my soapbox. Embrace your health.

Robinredbreast · Jan 17, 2019

Patrick66 said:
Live in hope, die in despair....

"Expect the worse, but hope for the best "

Robinredbreast · Jan 17, 2019

sbnz said:
Wow - did I read your message right? You were diagnosed over 30 years ago (so probably quite young then?) with type 1 and now they are 're'- diagnosing you as late-onset type 2?...has your Doc completely missed reading your diagnosis of 30 years ago and casework since? And isn't type 2 (traditionally) a late-onset condition - why point it out? Sounds like your Dr and team are a confused group? Totally get your knocking head against wall emoticon. Maybe get the emoticon enlarged and wear it printed on a tshirt next time you see them? Sorry that probably not helpful. Oh b###er it - do it anyway.

When I told my hospital diabetes team about the sudden change( it has been changed back) they told me not to take any notice, as I am Type 1. I was 31 when diagnosed, I was 8 1/2 st and then went down to 7st 1, I had infections, a terrible ferocious thirst, drinking out of the tap, always tired, lethargic too.
This was my new GP, who I had never met, maybe he had a crystal ball in his room that needed cleaning, or maybe trying to cut down on cost. As the diabetes nurse said to me ' Dr **** is very knowledgeable about diabetes and only children and young adolescents get type 1' you couldn't make it up.

How's NZ ?

sbnz · Jan 17, 2019

Ugggghhh. So much for scientific method.

johnme said:
It is. But this runs through the nhs. An (admittedly retired) gp friend was unable to differentiate between ketosis and ketoacidosis (just don’t let your carbs drop too low John) another dr friend (we are are buddies of more than 30 yrs standing) asked me ‘do you know exactly how metformin works?’ ie he didn’t. When I was in hospital in the autumn with PE they would come round taking orders for lasagne and spotted **** and handing out metformin.

sbnz · Jan 17, 2019

Robinredbreast said:
When I told my hospital diabetes team about the sudden change( it has been changed back) they told me not to take any notice, as I am Type 1. I was 31 when diagnosed, I was 8 1/2 st and then went down to 7st 1, I had infections, a terrible ferocious thirst, drinking out of the tap, always tired, lethargic too.
This was my new GP, who I had never met, maybe he had a crystal ball in his room that needed cleaning, or maybe trying to cut down on cost. As the diabetes nurse said to me ' Dr **** is very knowledgeable about diabetes and only children and young adolescents get type 1' you couldn't make it up.
How's NZ ?

Oh okay, you were a little (more mature) than I had projected - but nonetheless your Doc sounds like his perception of his knowledge was larger than his knowledge. You poor thing for going through that time. I'm glad the hospital corrected it. Makes me wonder - do they ever give feedback to each other when misdiagnosis leads to problems for patients or are they more concerned with looking after each others reputation/ ego?. I'm off for a swim now - here in NZ its summer! Woohoo!

TerriH · Jan 18, 2019

I`m afraid that in spite of years of promises from the health professionals, unless there is a specific interest in diabetes, then we are left very much to fend for ourselves and although there has been some progress, lack of dietary advice is as prevalent now as it was 53 years ago when I was first diiagnosed. Use the web to find out if there are any good support groups where you live and the Diabetes Uk Learning Zone coulp prove very useful to you. Another thing you could try is a talk with one of the Diabetes UK advisers. You can get the number from the Diabetes UK site. I have managed to survive through sheer willpower and learning and NOT from doctors

jjraak · Jan 19, 2019

Robinredbreast said:
Hi, my new GP ( 2 years ago) whom I had never met, changed my diabetes type from Type 1, to ' late onset type 2' this was said to me at my diabetes check up with DSN at my surgery and she said my GP was very knowledgeable about diabetes and then nurse said type 1 only happens in children and adolescents !!
My latest results weren't great last week, so I rang the diabetes nurses at my hospital asking for help and advice and 9 days later still nothing. I wonder what the point is at times and feeling worthless and invisible.
30 years type 1 and it's hard going

MODS..where oh where is the FURIOUS Emoji we so desperately need for far too many posts like this..?

We are (to quote john merrick) NOT animals , we are HUMAN beings.

So GP's / HCP treat us as such,, with respect and as Adults.

jjraak · Jan 19, 2019

HSSS said:
There are courses for dietary advice offered on the nhs. Mine took 4 months from diagnosis and was ordered by my low carb advocate DN. that was a low gi thing pretty much.
This forum gave far better advice that worked better.

However apparently only 3/10 offered the course took it up.
Of the dozen people on the course about 9 barely knew what a carb was or how it affected them. (That was ME, Sadly )

At least 6 walked away poo pooing the advice and thought changing their diet was too much trouble and they’d just take the easy pills instead. You can lead a horse to water.......
maybe some gps assume almost everyone would ignore the food advice and so don’t bother in the limited time they have.

I think drs and even diabetic nurses get very little in the way of dietary training. They then often fall back on the standard advice if the eatwell plate and starchy carbs. Some go to the low gi method of eating. Which I guess is an improvement on the empty added sugars options, slow release being marginally better than fast release carbs. And a very few educate themselves further about diabetic specific nutrition.

Totally agree on the forum point.
and the desmonds course..no idea about carbs..?
where YOU on my course watching ME :***:

agree on the time restraints and training for many HCP.

I don't doubt the good intentions of the DESMOND type course...
but for me, it was barely informative i had been on here and probably knew as much if not more then the trainers, in some respects...... barring CARBS, obviously..

The patient AND T2D Survivor meeting..( See @Debandez posts for more info )

I personally would have benefited tremendously having such a meeting,
the advise of what to eat, how to eat, etc would have been invaluable,
and in terms of increasing meds and hospital interventions further down the road,
would in my mind be COST effective, regarding the states cost,
AND Cost effective on the Patient, in regard to complications and quality of life.

Major Buckmaster · Jan 19, 2019

I fear our case is not as strong as merricks lol.

jjraak said:
MODS..where oh where is the FURIOUS Emoji we so desperately need for far too many posts like this..?

We are (to quote john merrick) NOT animals , we are HUMAN beings.

So GP's / HCP treat us as such,, with respect and as Adults.

[/QUOT

jjraak · Jan 19, 2019

Major Buckmaster said:
I fear our case is not as strong as merricks lol.

True @Major Buckmaster lol,
But we are still deserving of SOME respect, though.

Major Buckmaster · Jan 19, 2019

jjraak said:
True @Major Buckmaster lol,
But we are still deserving of SOME respect, though.

True lol.

JAT1 · Jan 19, 2019

I have been given loads of bad advice from doctors and not just about diabetes but also about other critical situations. However, thanks to several life-saving operations, one lasting 12 hours under the knife, my life was saved on several occasions. I am very much grateful for that. Often we have no option but to accept the doctor's educated opinion and have faith that they are recommending what's best. Bad advice is worse than no advice so at least with diabetes blind faith is not required.

SlimLizzy · Jan 22, 2019

Feeling very let down and low indeed. Just had results for new HbA1c 42.
Doctors comment "No action needed"
Lot of you will be looking at that and thinking its good - except two months ago was 37. First one was 43, so almost back to start.
Have to assume its because I am now less active and consuming more carbs in an effort to slow/halt the weight loss.
Went from 100g carbs to 120, but like I said also less active, not much need for gardening, decorating all done, bar a bit of touching up. Daily XBX programme and walking to town 3-4 times a week is about all the exercise atm. Its cold, wet and am lacking the will to go out there just for the sake of it.
So yes this week, small weight gain, but if HbA1c is up, thats not a good sign at all.

Anyone else feel their Doctor(s) let them down ?

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