We really are our own practitioners in this, cast to the wolves

Well, you're not alone.... My GP had no idea what a c-peptide level was, so I had to explain it to him because I was pretty sure I was becoming very insulin deficient... the result showed I was right. I will note it is good when they do listen to you. The problem seems to be those who will not listen and those who will not accept evidence of what you are doing as being correct. Whether it be your own results staring at them or printed out evidence.

You really do need to self educate and take charge as much as possible.

Ronancastled said:

Had a phone consult with my GP yesterday, needed my 6 month script for statins (yeah) & BP meds renewed.
Anyway the surgery are not doing any lab work at present due to Covid so no new HbA1c or FBG for me.
So she asked how I was getting on with my home measuring & I told her how my FBG had fallen into the low 4s & how I'd passed the 75g OGTT.

She just didn't want to know, wanted to put me on glucophage ??? & up my BP meds.
My BP isn't even that bad, I can get it down to 115/65 easily when resting.
Anyway, just before the tablet dispensing machine got off the phone she told me she was moving to another practice.
Of course I was courteous & wished her good luck but I'm honestly at a stage where I could take or leave medical practioners.
The surgery nurse had never even heard of a C-peptide test or fasting insulin last time I asked for it to be inclused on my blood panel.

If I didn't need an official HbA1c every 6 months & could order my own meds online I could easily ignore these professional services in the future.

Click to expand...

I didn't realise you could ask for the c-pep and fasting insulin to be included in your bloods test - I will ask the next time - did they agree and do it for you no problem?

Mrs T 123 said:

I didn't realise you could ask for the c-pep and fasting insulin to be included in your bloods test - I will ask the next time - did they agree and do it for you no problem?

Click to expand...

You can't get fasting insulin on the NHS.. most phlebotomists have never even heard of it.. you might be able to get a c-peptide but that's pretty unlikely unless they suspect you are a misdiagnosed T1.

Ronancastled said:

Nurse had never even heard of them.
Once Covid is over I'll get to do them privately & interpret my own results.

Click to expand...

Always say that we have to look after our own health.. it's ours after all...

bulkbiker said:

Always say that we have to look after our own health.. it's ours after all...

Click to expand...

In the last period since diagnosis (2008) I’ve had good surgeries and bad ones. Some have doctors who specialise in diabetes and that helps. But in every case it’s been needed to support the doctors and not go on blind faith that they are always right

so, monitoring my own bloods, suggesting some new treatments etc. I’ve not always done so well but with diabetes a lot of this is self managed by it’s nature. We decide what we eat and are the ones who know how it does (or not) impact us.

gwtting a nurse who basically talks at you like a 2 year old is never a good thing though. But I wonder, there are many patients who really don’t care, eat what they want and blame the doctors when things go wrong. It must be hard. So I always smile and treat with respect but as I said, own investigation and these forums and stuff is key, otherwise progression, insulin and eat well can be the (wrong mostly) conclusion

when we get a good surgery like mine is, it’s great and moving house becomes a nightmare. But I have also know 2 patients who go to same surgery who have different experiences. But of a minefield

overall though, NHS is free, mostly helpful and doing its best on the frontline. Fat from perfect but glad we have it. My surgery has had to put up a warning because staff are being mistreated due to COVID. I made it clear last time I saw a nurse that I thought it was not on, think I made her day.

Andydragon said:

But I wonder, there are many patients who really don’t care, eat what they want and blame the doctors when things go wrong

Click to expand...

To be honest that arises because the message from the vast majority of diabetes nurses and GP's is that T2 is a progressive, chronic disease and that anyone who has it will end up on insulin. That was the message I got on my meeting with the area Diabetes Nurse who was so impressed with how metformin had brought down my blood sugars until I told her I hadn't taken any for over a month.
If you are told that there's nothing you can do but take these pills by someone who is meant to be looking after your health then you'll do exactly that. Thankfully I had already found the forum and had got the low carb message before I had even been officially diagnosed so was well prepared for the barrage of negativity. For the poor souls out there who never get here I feel huge anger as well as sadness.

I was told I had fatty liver and that nothing could be done about it. I thought hmmm we'll see about that and researched it. My figures were vastly improved by my next blood tests. No-one asked what I had done to reverse it. No-one even mentioned that it was almost completely healed. If I had believed them it would be getting progressively worse and I would probably be drinking my way to sclerosis through being depressed about it.

my 2p's worth and a question
I feel that our NHS has taken a backward step recently leaving many of us feeling as if we are on our own what with normal check ups and lab work being postponed or cancelled. I hope things can re build and that the treatment of diabetes can be more lifestyle and diet based as the evidence base for this approach grows.
That aside whilst my own diabetes is my specialist topic and I feel as if I've got a bit of knowledge in general about this topic, I do not know whatever illnesses I may succumb to and need treatment for as I age.
My diabetes experiences personally and via your anecdotes, have given me cause to be skeptical of all medical orthodoxy but doesn't mean I'd be wise to not listen to advice or a diagnosis.
SIDE NOTE - this has become more pressing because my husband age 50 with 130kg weight at 5'10 (beer belly shaped but no beer) with type 2 dad and obese mum) needs to ask the doctor to recommend him for a calcium scan (my idea) and standard blood panel. So far he has low ldl and normal trig/hdl, low blood pressure and no sign of blood sugar issues.
Can anyone suggest anything other than c peptide test and is a liver scan needed to check for fatty liver ? His dad had a heart attack and bypass surgery 10 years into his type 2 diagnosis but his mum is just fat at age 75+ so I'm keen to help him avoid this but want to know where I am starting from.

NicoleC1971 said:

my 2p's worth and a question
I feel that our NHS has taken a backward step recently leaving many of us feeling as if we are on our own what with normal check ups and lab work being postponed or cancelled. I hope things can re build and that the treatment of diabetes can be more lifestyle and diet based as the evidence base for this approach grows.
That aside whilst my own diabetes is my specialist topic and I feel as if I've got a bit of knowledge in general about this topic, I do not know whatever illnesses I may succumb to and need treatment for as I age.
My diabetes experiences personally and via your anecdotes, have given me cause to be skeptical of all medical orthodoxy but doesn't mean I'd be wise to not listen to advice or a diagnosis.
SIDE NOTE - this has become more pressing because my husband age 50 with 130kg weight at 5'10 (beer belly shaped but no beer) with type 2 dad and obese mum) needs to ask the doctor to recommend him for a calcium scan (my idea) and standard blood panel. So far he has low ldl and normal trig/hdl, low blood pressure and no sign of blood sugar issues.
Can anyone suggest anything other than c peptide test and is a liver scan needed to check for fatty liver ? His dad had a heart attack and bypass surgery 10 years into his type 2 diagnosis but his mum is just fat at age 75+ so I'm keen to help him avoid this but want to know where I am starting from.

Click to expand...

I would suggest ggt and alt for the liver. I would actually try a swing a full blood count.

We all have to run our own PHS (Personal Health Service) for non-communicable diseases and or participate in GHS (Group Health Services, such as this one). The NHS is good for say a leg break, scans or hip replacement and maybe other chronic conditions; but for Type 2 diabetes, it is a condition management system in relation to the Eatwell Guide.

NicoleC1971 said:

my 2p's worth and a question
I feel that our NHS has taken a backward step recently leaving many of us feeling as if we are on our own what with normal check ups and lab work being postponed or cancelled. I hope things can re build and that the treatment of diabetes can be more lifestyle and diet based as the evidence base for this approach grows.
That aside whilst my own diabetes is my specialist topic and I feel as if I've got a bit of knowledge in general about this topic, I do not know whatever illnesses I may succumb to and need treatment for as I age.
My diabetes experiences personally and via your anecdotes, have given me cause to be skeptical of all medical orthodoxy but doesn't mean I'd be wise to not listen to advice or a diagnosis.
SIDE NOTE - this has become more pressing because my husband age 50 with 130kg weight at 5'10 (beer belly shaped but no beer) with type 2 dad and obese mum) needs to ask the doctor to recommend him for a calcium scan (my idea) and standard blood panel. So far he has low ldl and normal trig/hdl, low blood pressure and no sign of blood sugar issues.
Can anyone suggest anything other than c peptide test and is a liver scan needed to check for fatty liver ? His dad had a heart attack and bypass surgery 10 years into his type 2 diagnosis but his mum is just fat at age 75+ so I'm keen to help him avoid this but want to know where I am starting from.

Click to expand...

May I suggest reading Ben Bickman's "Why we get sick". Most of what he covers is well known research, but he pulls together many aspects of insulin resistance (not just T2 effects) on anyone's health. Sorry, I know so many of us on this forum swear by low carb approaches, but they really are game changers for those of us that genetically don't handle carbs well & a beer belly is a classic sign...

As far as I know c-peptide is primarily a test for endogenous insulin production to discriminate between T1 and T2, doesn't directly inform on fatty liver. Abdominal ultrasound is very good check for fatty liver, but not sure how easy to get on the NHS. Lobby for CAC , but sadly not often prescribed until after your first heart attack? Definitely liver enzyme tests ALT, APT, GGT are informative, although the liver may be quite damaged before levels move outside normal ranges (but the liver is resilient recovering in the right conditions).

I see on other posts, variable results from trying to proactively engage with GPs. Maybe I have been super lucky, but my GPs, DSNs, and hospital endos have been very responsive the more I am willing to take ownership of my own health. We don't always agree, but respectful debate.

oldgreymare said:

May I suggest reading Ben Bickman's "Why we get sick". Most of what he covers is well known research, but he pulls together many aspects of insulin resistance (not just T2 effects) on anyone's health. Sorry, I know so many of us on this forum swear by low carb approaches, but they really are game changers for those of us that genetically don't handle carbs well & a beer belly is a classic sign...

As far as I know c-peptide is primarily a test for endogenous insulin production to discriminate between T1 and T2, doesn't directly inform on fatty liver. Abdominal ultrasound is very good check for fatty liver, but not sure how easy to get on the NHS. Lobby for CAC , but sadly not often prescribed until after your first heart attack? Definitely liver enzyme tests ALT, APT, GGT are informative, although the liver may be quite damaged before levels move outside normal ranges (but the liver is resilient recovering in the right conditions).

I see on other posts, variable results from trying to proactively engage with GPs. Maybe I have been super lucky, but my GPs, DSNs, and hospital endos have been very responsive the more I am willing to take ownership of my own health. We don't always agree, but respectful debate.

Click to expand...

Thanks and I've read Ben Bikman's book and concur with your recommendation. Getting anyone who isn't that interested to read it is of course a different matter. He writes really well and clearly though.
Thanks for all the reminders on tests for liver etc. I think we can pay for the CAC; I aonce asked for this myself and was informed that 'its no good for diabetics because you all have high scores anyway'!
Glad to hear you've had a useful discussion with your doctors and egos aside who knows how may of them you've prompted a thought in.

It always amazed me that no doctor ever asked “how I did it” In a year I had lost a daft amount of weight and gone from, as bad as it gets to as good as it gets, ok it all went wrong later, but with a diabetes pandemic, I just would have thought they would have been curious about my “cure” (lchf btw)

I agree with @Fenn - my levels have been 'normal' for over a year yet my doctor seems sceptical about how it has been achieved. I find it so sad- if I hadn't found this site my world would be very dark right now as I would have followed my drs advice and it would have progressed and I wouldn't have lost weight and the dr would continue not to believe me that I wasn't going overboard on calories... This place is great I just wish the medical profession would get onboard and help others control their condition.

I can never thank those here enough.

The health care you get is pretty much entirely dependent on the doctor. A good doctor, and anything you can justify is there. A 'bad' doctor, and if it's not in the regulations and 'guidelines', you can whistle for it.

bulkbiker said:

You can't get fasting insulin on the NHS.. most phlebotomists have never even heard of it.. you might be able to get a c-peptide but that's pretty unlikely unless they suspect you are a misdiagnosed T1.

Click to expand...

I've had multiple c-peptide tests and one fasting insulin test on the NHS (to rule out some obscure condition). I think at the time I was classified as severe insulin resistance (type 2), but the doctor thought the tests were reasonable and so I got them.
The difference in phlebotomist experience might be hospital vs. GP personnel.

Seacrow said:

one fasting insulin test on the NHS

Click to expand...

That's quite amazing.. at one of the PHC conferences (2017) a room half filled with GP's was asked and no-one had ever had a patient given an NHS fasting insulin test. In fact only 3 people in the room at the time had ever had one.. me, Amanda A who used to be here as cherry_aa and I think Dr Scott Murray (or one of the other lowcarb docs) and we'd all gone private for it.

bulkbiker said:

That's quite amazing.. at one of the PHC conferences (2017) a room half filled with GP's was asked and no-one had ever had a patient given an NHS fasting insulin test. In fact only 3 people in the room at the time had ever had one.. me, Amanda A who used to be here as cherry_aa and I think Dr Scott Murray (or one of the other lowcarb docs) and we'd all gone private for it.

Click to expand...

I have an incredibly good consultant. Besides, if you asked my GP I don't think she'd know if I'd had a fasting insulin or not. She certainly didn't remember I took part in the 100,000 genome project and had my DNA sequenced.