Still disappointed by support

[E.Scott]

I was diagnosed as T2 Diabetic in 1996. Back then I looked at the various Diabetes support boards and was dismayed at the way people seemed to allow diabetes to define them. So I stopped visiting those sites. In February I will be moving onto Insulin and I have reviseited Diabetes.co.uk to seek some understanding of what I face.

Instead of finding support I find my fears of losing my driving licence, and my livelihood and my home aggravated. I find conflicting information on diet. I have started doing research and I am increasingly inclined towards the opinions that:

a/ NHS Diabetes care is an off the shelf solution, when itactually needs to be tailored to each individual. I now understand that when diagnosed initially insulin may have helped delay the deterioration of the pancreatic operation and that it has shown in some cases to effect restoration for a period. This was never discussed. Instead it was Metformin and beat the hell out of the pancreas for as long as we can.
b/ Doctors and Nurses give set advice - I was told that I couldn't drink alcohol - quite contrary to all the guidance I find now. I was told that exercise will help cut blood sugar levels - it doesn't on its own, it raises them. I was told to exclude sugar and eat carbs in moderation, (who's moderation?). The questions asked were standardised. I walked out on one review because the nurse hadn't even read the basic notes. (Mind you, I've had doctors who have done the same and made incorrect presumptions).
c/ Some people proffer guidance without thinking that their solution may not be the same as the next. I was told to eat salads - raw tomato shoots my blood sugar sky high, cooked not so much ( it should in theory be the other way around) - that is just a small example.

How do people differentiate the care/ the advice/ the diet that is right for themselves? Is it all trial and error? :?

 

[ladybird64]

Hello and welcome to the forum.

I'm sorry you seem to find that this site only fuels your concerns but I have to be truthful and say that I think your remark about a lack of support is rather unfair, given the fact that you have never posted here before asking for support for yourself.

The whole point of a support forum is to do just that, support and possibly advise those with concerns. Most of the forum members (in fact nearly all I believe?) are diabetics and we do our best to help each other out.

Regarding the issues of driving licence etc, if people are worried, surely they are entitled to ask for some advice or support around those issues, there wouldn't be much point in having a forum if people were limited on what questions they could ask!

As you have found, we too have found that there is indeed much conflicting advice given by many health professionals on numerous issues, diet and self monitoring being a couple of the most contentious issues.

I think the general consensus of opinion here is that it is indeed trial and error regarding our health. Many who aren't prescribed test strips buy them to initially find out what foods are causing blood sugar rises and therefore know what to avoid. After a period of self testing many are confident about their blood sugars on a daily basis and don' tneed to test as much.

Much of the NHS Diabetes care is standardised and it is doubtful there will be a change in thinking there, so from a personal viewpoint, I aim to be pro-active and manage my diabetes myself as much as possible.

I have simple aims, to keep my sugars within a reasonble level (for me in the 6's and possibly low 7's) and to be aware of my health generally in case of any complications.

It seems to be working ok so far.

There are plenty of folks here who are type 2's on insulin who I'm sure will be more than happy to try and advise you-feel free to ask.

 

[Daibell]

Hi. I sympathise with your questions and concerns. When I was diagnosed in 2004 I took the same approach as I have always done as a scientist and practising engineer in my job i.e. I decided to gain as much knowledge as possible, become an expert (as far as possible) and take control as it's my health at stake. People in the NHS are only human and they vary greatly in their abilities; same as in any part of life. Commenting on your points:
a) If you download and read the various NICE and NHS Diabetes documents you find they are actually very good and offer flow charts and options for NHS professionals to follow; I use them to position myself as my Type 2 develops. Sadly many GPs/nurses don't have the time, interest etc to study the chart for each patient during the up to 30 mins annual consultation with much of the time spent on weighing, taking BP, checking feet etc and not enough spent on listening and discussing. I'm afraid the reason is cost and too many patients per GP or diabetes clinic. Opinions vary on whether to start insulin early or late and I've not come across any data at least on the web to clarify the best approach. DB is an extremely complex subject. In reality there is no such thing as 'Type 1' or 'Type 2' just a complete spectrum of types with more and more genes and metabolic processes being found to be implicated. It is no different with cancer, arthritis and so on. Ref Met, I think you'll find it doesn't hit the pancreas in the way that the sulfonylureas do (e.g. Gliclazide). Even in the 8 years since I was diagnosed knowledge has moved on and I suspect since your 1996 diagnosis there will have been even greater changes; I never even had a blood test at my diagnosis - just a guess by my GP at what 'Type' I was.
b) Ref exercise, it all depends on whether you have have a short or long session, what your start carb level is etc. The liver may do a glucose dump. Yes, your BS may go up for a while but you are still burning glucose one way or another.
c) Ref diet we all need to measure, acquire knowledge on what foods e.g. carbs have what effects and make decisions based on the measurements and knowledge. This is the only way you can take control yourself and optimise the result. The NHS just don't have time, money or sometimes expertise is do this for each individual; sad but true.

In summary I take the approach that any manager etc should do i.e. first set objectives and process(NICE do this in ther guidelines). Measure (using the meter or any other available tests). Review the results and change the objectives and process based on that knowledge. That minimises the guesswork we all experience.

As Ladybird64 says, there is a lot of knowledge on this forum which has been of great help to me and then there is the infinitely helpful www......

 

[donnellysdogs]

Be happy...

You have insulin and a new regime but be positive!!!!

Do by the book for paperwork stuff such as driving licence etc... But the rest is down to you and your body....

T1 25+yrs.... Under 50 and still rockin n rollin...
Most important thing is to find out what suits your body.
I am on pump, but from huge support here know we are all completely different... Find what is best for you....

Cheat on limited occasions, but at end of day...

All health persons are doing is... PRACTICING...
if any if them had all the answers then they would have a patent!!!! We can only offer advice.. Get to normal weight... Whatever that is... And live.... Excesses either side can only be temporary.... But still allowed!!!

Live...

 

[))Denise((]

and don't forget this is http://www.diabetes.co.uk and the comments made on this forum are from our own personal experiences and what works for us. This is different from http://www.diabetes.org.uk - the charity.

 

[E.Scott]

Thanks for the comments, gives something to think about. Nonetheless, I cannot help but find the overall aura makes me feel worse about the future than better.

I had exactly the same to eat today as I had yesterday. Before tea tonight I checked my BS. Yesterday it was 6.2, today it was 9.8.

I went to bed last night with a reading of 6.2 and for the first time feared a hypo during the night. at about 3.00am I checked again and instead of going down it had gone up, and by morning it had risen still further.

Readings appear to be completely random give that I'm doing nothing different, eating nothing different each day.

 

[Anonymous]

at least your able to talk to drs ,my gp is very good with me but when i call my DSN she always says that she will call me.but never ever does,i have now given up trying with my nurses,going to put complaint in and go it alone with my gp help.

 

[ladybird64]

Thanks for the comments, gives something to think about. Nonetheless, I cannot help but find the overall aura makes me feel worse about the future than better.

I had exactly the same to eat today as I had yesterday. Before tea tonight I checked my BS. Yesterday it was 6.2, today it was 9.8.

I went to bed last night with a reading of 6.2 and for the first time feared a hypo during the night. at about 3.00am I checked again and instead of going down it had gone up, and by morning it had risen still further.

Readings appear to be completely random give that I'm doing nothing different, eating nothing different each day.

Hi again.

I am only a relative newbie to Diabetes, I was semi-diagnosed in June this year. I have looked after my type 2 daughter who uses insulin but she has quite a complex medical history so can't draw on that experience.
Can I make a suggestion? Perhaps repost (or maybe mods could move your post) to the Ask a Question part of the forum, I'm sure you aren't the only one that is happening to (I know my levels rise in the morning) and it might get missed in this part of the forum. Someone with some personal knowledge might be able to give you some pointers and reasons for why you are getting these frustrating problems.

Good luck

 

[daisy1]

E.Scott,
I will move this topic to Ask a Question if you would like me to. I am asking so that you know where it is!

 

[Unbeliever]

All I can say E. Scott is YES EXACTLY. Moany of us are here because all the problems and contradictions you cite.
I am in complete agreement with you about the need to tailor the treatment to the individual. Under tthe present system they may as well pour it down the drain directly to save time.
Most of us here are just trying to take control of iur own diabetes. My so-called HCP team are more of a hindrance to that process than anyhing else.
Had I taken the only advice offered to me by them I would now be in a much worse position than I am at present..
Some are very fortunate and do receive help and support from caring and enlightened HCPs . Others are not so forunate. I often wonder how much damage has been done to the unforunates who obey the NHS diktats without question or who are not in a position to double-check advice given by half-trained or incompetent "DSNs".

Its a parlous state of affairs - and it isn't all about money. It aproblem of the best way to use resources. I feel that there may be a change in the future , probably on he grounds of cost but whether it will be a change for the better I really wouldn't wish to conjecture.

Regarding your levels - I wonder if you have taken into account the role stress can play You may eat the same food at thesame time and take the same amount of exercise ec but we are not machines . Hormones affect our levels too. Stress plays a big part.

Good luck in working out what suits you. we all try to support each other from our own experience.
Someimes it is helpful and makes others feel optimisic but by its very nature it can sometimes cause fears and worries.
Perhaps mentioning specific problems as they arise will allow others to help more effecively.
I do know hat many here share your feelings and many have come to terms with it all.
I have managed to bring my levels dowwwwn very satisfactory based on the advice I have found here. And also by totally rejecting the advice given to me by the NHS .
I have managed not only to stay off insulin but to reduce my medication considerably.

I am due an HBA1C test shortly. The "DSN" is high- jacking all such appoint,ments and I'm not exagerrating when I say I feel suicidal at the thought.

 

[chocoholicnomore]

E Scott, I just wanted to add my tuppence worth.

I am sorry that you feel disappointed by the support/information from this forum.

I have experienced the total opposite from you. This forum has been a godsend to me and the advice and support I have received has been brilliant. I couldn't have achieved so much in such a short time without this forum. Everyone is so friendly and helpful and honest. Nothing is too much trouble and no question is stupid.

With regards to DVLA issues, the laws have changed and everyone is expressing their own opinions and concerns regarding the changes. Why should that make you more fearful of losing your licence? Surely you just have the same fears as everyone else and reading the discussions doesn't increase the chance of you losing your licence! Just like reading about diabetic complications doesn't increase your chance of developing them, if you see what I mean.

I appreciate that you have problems with your BG levels and I really do hope someone with more experience comes along and offers you some help and support. I am sure that they will.

Good luck with it all and I hope that you do continue with the forum and gain as much from it as I have. I really can't praise it enough.