Your primary care team T2D

[jjraak]

I was diagnosed T2 on an emergency admission to my local hospital. I have had an elective transfemoral amputation of my left leg due to osteomyelitis in tibia and femur near the knee and the stump became badly infected from no obvious source. The staff nurse on the ward I was admitted to routinely tests for diabetes and I tested at 24. That meant nothing to me but I was put on Metformin and told I would get a visit from the diabetes nurse. She turned up 3 weeks later on the day I was discharged to write the Government mantra on the discharge form (T2, do not test).

During my stay the nurses tested before and after each meal and I set about lowering the numbers. My trusty IPad and a window close to a phone tower gave me google access to the internet and I found Diabetes UK and then diabetes.co.uk as well as the Diet Doctor. I realised that the menus I was filling in each day were poison even though they were marked as suitable for diabetics. So I ditched the potatoes, pasta, rice, bread and cereals and just drank tea and water, and ate eggs and picked out the meat. That got my finger pricks down to around 7 at the time of release.

My GP practice added Metformin to my online prescription renewal and that has been the total involvement of a doctor. After 3 months I got a blood test to learn my first HbA1C from the DN which was 45 and my feet checked but turned up on the wrong day for the retinopathy test. My DN was happy with my diet control and knew about LCHF. A year later my second HbA1C is 41 and I did get a retinopathy test this year.

Who needs doctors? I shall carry on my own sloppy dieting. Let them tick their boxes and I’ll get all I need from the Internet.

My treatment at the rehab centre is first class in comparison. I learned last time how to stand up unaided after a fall when walking with my prosthesis. I just went and asked and was immediately shown by a physio what to do. She also advised me that falling was not a good idea.

Hi @JohnR127

it should be sad, for what has happened ...but it's one of those stories that inspires,

that a person can pick themselves through that midfield of bad advice and still recover enough to save and enrich their own lives, with their own efforts.

Shouldn't be that way, but i do take my hat off to you for the way you coped with it all, and turned it around.

Respect.

 

[Guzzler]

Can you not simply make an appointment with your GP and then let the consultation commence?

If only I could drag him kicking and screaming from the subject of statins. He is utterly disinterested in diabetes.

He has boxes to tick dontcha know.

 

[Debandez]

And you discovered this approach where?

My point is that wherever you discovered it it was not likely to have been your friendly neighbourhood HCP.

Well, I came out of the surgery having told the DN I was going to try diet and if it didn't work then I would succumb to meds. Went home. Cried. Cried some more. Then cried again..then I got on my mobile and googled reversing diabetes. Everything was pointing to LCHF and lots of links to DCUK. I joined the forum. People like @bulkbiker @Rachox @Goonergal @Brunneria @shelley262 and many more guided me, comforted me and simply blew me away with the amount if knowledge they had and how much time they gave up to share that knowledge. I watched videos (fung speaks so much sense) read books. The rest is history. So no, not my HCPs or Dr. In fact when my hba1c went from 62 to 39 I went in to dr. I told him how I had done it. He wasnt impressed. You could have done it on low cal he said. I couldn't argue but went home and emailed surgery. As I was then on PPG I had all relevant email addresses. I asked them for stats on how many had done what I had. Do you know what the reply was. From 3 DNs. Only bariatric pts have done what I have.

The dr i was talking about also preceded to thrust a cup in my direction saying 'dont get your Google mixed up with my medical degree'. Hubby was a witness. Anyway we have moved on since then. He had to sit next to me at the ppg xmas lunch!!! Awkward.

 

[Guzzler]

Well, I came out of the surgery having told the DN I was going to try diet and if it didn't work then I would succumb to meds. Went home. Cried. Cried some more. Then cried again..then I got on my mobile and googled reversing diabetes. Everything was pointing to LCHF and lots of links to DCUK. I joined the forum. People like @bulkbiker @Rachox @Goonergal @ brunneria @shelley262 and many more guided me, comforted me and simply blew me away with the amount if knowledge they had and how much time they gave up to share that knowledge. I watched videos (fung speaks so much sense) read books. The rest is history. So no, not my HCPs or Dr. In fact when my hba1c went from 62 to 39 I went in to dr. I told him how I had done it. He wasnt impressed. You could have done it on low cal he said. I couldn't argue but went home and emailed surgery. As I was then on PPG I had all relevant email addresses. I asked them for stats on how many had done what I had. Do you know what the reply was. From 3 DNs. Only bariatric pts have done what I have.

The dr i was talking about also preceded to thrust a cup in my direction saying 'dont get your Google mixed up with my medical degree'. Hubby was a witness. Anyway we have moved on since then. He had to sit next to me at the ppg xmas lunch!!! Awkward.

I reduced my A1c from 98 to non D numbers and it hasn't raised a hair. No one has asked me how, my last review could only be described as perfunctory at best.
I did ask if I could have a lower dose of Met seeing as how I had improved and was told no, not yet. Promised to address the q of Met at a review in 3 months time. That was in February. Still waiting for the appt for a review. Little do they know I stopped taking the Met end of December 18 and STILL got a nonD.

So. Nuh nuh nee nuh nuh! to them all.

 

[jjraak]

I reduced my A1c from 98 to non D numbers and it hasn't raised a hair. No one has asked me how, my last review could only be described as perfunctory at best.
I did ask if I could have a lower dose of Met seeing as how I had improved and was told no, not yet. Promised to address the q of Met at a review in 3 months time. That was in February. Still waiting for the appt for a review. Little do they know I stopped taking the Met end of December 18 and STILL got a nonD.

So. Nuh nuh nee nuh nuh! to them all.

hahahaha...Love your style of humour.

 

[Listlad]

Do you know what the reply was. From 3 DNs. Only bariatric pts have done what I have.

Funny thing is Deb, one of my GP’s had bariatric surgery not so long ago.

 

[Muddy Cyclist]

I was diagnosed Type 2 in April, went to see a nurse regarding a sun damaged cell that had started itching, she noted I had avoided the doctors for 5 years and had me jump on scales, took blood and BP, which started this merry go round I now find myself on. In a way I'm glad as I have taken control of my life, hope to avoid serious complications and feel good, but only with the help of Diabetics UK. Initial diagnoses 49, Cholesterol 6 weight 103 Kilo.

Initially I was summoned to see the Diabetic Specialist Doctor, what a waste of time, he made it clear I only had 10 mins and I was only there to be told I was Type 2 and prescribed medicine and statins. I explained I had many questions, his advice was to see a nurse for a 30 min appointment and look at this website for answers. I was unable to make an appointment as there were non left and told to telephone in 3 days time when the new appointments would be available. Three days later I telephoned and got through to reception 10 minutes after the lines were open and guess what all the appointments had gone and I was told to try again in 3 weeks time. I complained via email to the practice manager, suggesting that in this age of clever technology it should not be beyond the capability of an appointment booking system to recognise potentially serious diagnosis and reserve or offer extended appointments to those patients. I had a very curt reply saying they were very disappointed that I was not happy with the surgeries Diabetic Care which they take very seriously.

I did eventually get a 20 minute appointment with the same specialist doctor but again a waste of time. His advice, take the meds, eat starchy carbs, loose weight increase exercise. I asked him about a low carb diet and he didn't believe it would be successful, he suggested that if I did not take the meds I could become insulin dependant very quickly even within 3 months. I refused the meds and left. He also said there was no need or point in monitoring blood sugars as it would not be beneficial.

So with the help of these forums I went Low Carb 35grams a day, lost 23kilo, increased my Aerobic exercise on my Mountain Bike to 3 hours at least 3 times a week and purchased a monitor, strips and sharps. I managed to do it all in 12 weeks since diagnosis. My last HbA1c test was 44 (I had hoped for better) Cholesterol 6.2 weight 80 Kilo. Non of this was achieved with any help from the NHS and they are still seriously pushing Statins and still I say NEVER!

My next 12 week HbA1c test is October when I hit 70 and so I hope to celebrate by getting it into the 30’s.

 

[ianf0ster]

…………………. The rest is history. So no, not my HCPs or Dr. In fact when my hba1c went from 62 to 39 I went in to dr. I told him how I had done it. He wasnt impressed. You could have done it on low cal he said. I couldn't argue but went home and emailed surgery. As I was then on PPG I had all relevant email addresses. I asked them for stats on how many had done what I had. Do you know what the reply was. From 3 DNs. Only bariatric pts have done what I have.

The dr i was talking about also preceded to thrust a cup in my direction saying 'dont get your Google mixed up with my medical degree'. Hubby was a witness. Anyway we have moved on since then. He had to sit next to me at the ppg xmas lunch!!! Awkward.

Awkward for him!
I'm full of admiration for you and what you have achieved.

I am determined to prove the Diabetic specialist GP that I saw wrong too.
I was only borderline overweight to start with, but have lost within 1lb of 10% of body weight on LCHF in 3 months.
Have not had follow-up Hba1c yet, but metering and have BG (mainly) under 8.0 - but very few reading below 5.0 yet.

 

[jjraak]

awesome story @Muddy Cyclist ..(like the name )

sadly some similarities with so many other Diagnosis exchanges.

weird we can have families we take care of, manage or run successful businesses and yet get treated like a petulant child when we query the advice, and then to be treated in such a dismissive way..unbelievable but sadly rather common.

thanks for the input,

hope your journey follows the same smooth lines you have trod since then..

Best regards.

 

[jjraak]

Awkward for him!
I'm full of admiration for you and what you have achieved.

I am determined to prove the Diabetic specialist GP that I saw wrong too.
I was only borderline overweight to start with, but have lost within 1lb of 10% of body weight on LCHF in 3 months.
Have not had follow-up Hba1c yet, but metering and have BG (mainly) under 8.0 - but very few reading below 5.0 yet.

Just as a point of solidarity,
and slightly off topic
1 year in and i rarely get below 5.
only once i think.
it just seems my natural zone is the 5-6

i used to envy those who regularly posted a 4, now i'm more relaxed about it
as long as my highs are under the 8, then a 5 suits me the rest of the time.

 

[HSSS]

Just as a point of solidarity,
and slightly off topic
1 year in and i rarely get below 5.
only once i think.
it just seems my natural zone is the 5-6

i used to envy those who regularly posted a 4, now i'm more relaxed about it
as long as my highs are under the 8, then a 5 suits me the rest of the time.

I’m stuck in mostly 6’s with a similar history and carbs around 40.

 

[Bluetit1802]

Just as a point of solidarity,
and slightly off topic
1 year in and i rarely get below 5.
only once i think.
it just seems my natural zone is the 5-6

i used to envy those who regularly posted a 4, now i'm more relaxed about it
as long as my highs are under the 8, then a 5 suits me the rest of the time.

I have always thought each individual has a natural baseline level, whether it is in the 3s, 4s, 5s or whatever. That is where our body prefers to run, and where our body is happy. Standard ranges of whatever, whether blood sugar, cholesterol, full blood counts, or whatever, are based on averages of the whole population. Some will be lower and some will be higher, but still perfectly healthy.

 

[Debandez]

I was diagnosed Type 2 in April, went to see a nurse regarding a sun damaged cell that had started itching, she noted I had avoided the doctors for 5 years and had me jump on scales, took blood and BP, which started this merry go round I now find myself on. In a way I'm glad as I have taken control of my life, hope to avoid serious complications and feel good, but only with the help of Diabetics UK. Initial diagnoses 49, Cholesterol 6 weight 103 Kilo.

Initially I was summoned to see the Diabetic Specialist Doctor, what a waste of time, he made it clear I only had 10 mins and I was only there to be told I was Type 2 and prescribed medicine and statins. I explained I had many questions, his advice was to see a nurse for a 30 min appointment and look at this website for answers. I was unable to make an appointment as there were non left and told to telephone in 3 days time when the new appointments would be available. Three days later I telephoned and got through to reception 10 minutes after the lines were open and guess what all the appointments had gone and I was told to try again in 3 weeks time. I complained via email to the practice manager, suggesting that in this age of clever technology it should not be beyond the capability of an appointment booking system to recognise potentially serious diagnosis and reserve or offer extended appointments to those patients. I had a very curt reply saying they were very disappointed that I was not happy with the surgeries Diabetic Care which they take very seriously.

I did eventually get a 20 minute appointment with the same specialist doctor but again a waste of time. His advice, take the meds, eat starchy carbs, loose weight increase exercise. I asked him about a low carb diet and he didn't believe it would be successful, he suggested that if I did not take the meds I could become insulin dependant very quickly even within 3 months. I refused the meds and left. He also said there was no need or point in monitoring blood sugars as it would not be beneficial.

So with the help of these forums I went Low Carb 35grams a day, lost 23kilo, increased my Aerobic exercise on my Mountain Bike to 3 hours at least 3 times a week and purchased a monitor, strips and sharps. I managed to do it all in 12 weeks since diagnosis. My last HbA1c test was 44 (I had hoped for better) Cholesterol 6.2 weight 80 Kilo. Non of this was achieved with any help from the NHS and they are still seriously pushing Statins and still I say NEVER!

My next 12 week HbA1c test is October when I hit 70 and so I hope to celebrate by getting it into the 30’s.

It makes me so sad to read this. And very mad. They are on auto pilot. Spouting the same old same old. Years ago they may have had an excuse for this but not today. No excuse whatsoever. There is enough science out there to prove lchf works. (Actially the advice to t2d was lchf in 1936! Seemed to go the shape of a pear about 40 years ago after Ancel Keys flawed research which resulted in everyone being advised to eat low fat. Low fat is loaded with sugar. And if you eat low fat then you have to eat a substantial amount of carbs and protein) There is enough evidence it does. I've been sending this attachment to every man and his wife since putting it together last September for a meet up. There has been so many diabetics telling their stories in the media. And more and more are doing this to try and make waves which WILL result in changes. They seem reluctant to change current advice. Let's face it it makes pharma companies an absolute fortune. Statins especially. Massive reduction in statins, metformin and even insulin (which we have always been told would never happen).

Telling you your pancreas has basically conked out is so wrong. My sister was t2d. She has bariatric surgery (about 10 years ago). Reversed her diabetes almost over night. No different now. She can eat carbs and often does. So what about her pancreas? I'm sure your DN has dealt with bariatric surgery pts. Maybe you could ask. As well as the attached I have a booklet full of inspirational stories from our forum members. Also a leaflet about the benefits of blood glucose monitoring that @Rachox kindly put together. If you have high BP you are encouraged to test and monitor at home. Somehow bs dont count. DNs (not all) seem to think as long as your hba1c isnt going too high too quickly you are doing really well. The spikes dont matter it seems. Makes my blood boil. You could go armed with all these on your next visit should you do wish. PM me and I will gladly send you them. Together with the 'what have you eaten today' booklet kindly put together by @shelley262. All ideas from forum members. Things that keep bs low. Great recipes. Good swaps and general info. Dr David Unwin is very interested in this. He loves it and is currently looking at taking it forward and developing it into something bigger. All good..

Every little helps. The more we keep on at them the faster the changes will take place.

 

[Debandez]

I guess the problem with up to date methods is they still have to be tried and tested.

And the they have to prove that the previously tried and tested methods were wrong. But how can they be they were tried and tested?

There was a time when tying a frog to your head was thought of as a cure for the flu.
That time was TUESDAY, April 18, 2017 https://www.webmd.com/cold-and-flu/news/20170418/slimy-frog-might-be-a-flu-fighter

Up to date still has to be proven and we are getting there.



P.s in the mean time https://books.google.co.uk/books?id=lIrYAAAAMAAJ&pg=RA1-PR2&lpg=RA1-PR2&dq=tying+a+frog+to+your+head+to+cure+a+cold&source=bl&ots=Tacf04N0Xg&sig=ACfU3U1y6kslOz5_xN0E6B9fvLF7cSbXVA&hl=en&sa=X&ved=2ahUKEwjo99ax8ezjAhXqTxUIHfX7DOwQ6AEwCnoECAUQAQ#v=onepage&q=tying a frog to your head to cure a cold&f=false

Thalidomide (amongst other meds) was tried and tested. My mum was very sick throughout her pregnancy with me and was offered this drug. Thankfully she didnt accept it. Tried and tested can be very flawed. The 1936 guidelines were lchf. Worked well. Then came the low fat advice because if flawed research.

Research, theres another matter. When I read research articles about cereals being healthy and I see Kellogg's behind them.

It's shocking.

For me the proof is in the pudding (ironic really). So many doing well on lc.

 

[Debandez]

I was diagnosed 13 months ago, within the first month I had a second blood test, then saw the diabetic nurse at the surgery and had a foot check with another nurse, then had appointments for a followup in a month, then 2 months after (with another blood test), then because I was doing well a six month gap (another round of bloods). Also referrals to the hospital for diabetic eye screening, podiatry clinic and to a dietician (option for the Desmond course instead).
At the one year point I had blood tests, saw the diabetic nurse, eye screening, podiatry, etc. I've also been put onto annual NHS sight tests with an optician.

In between I do not have a named contact, but then my HbA1c dropped very fast after going low carb.

Everything I got from my GP's surgery is in the official NICE guidance.

Great results there. Brilliant. I note you are a member of the low carb program. I dont know if this would be something you would consider but the PR team were looking for volunteers with similar criteria to interview. Apologies if you are already aware.

 

[Debandez]

Until there is a top level overhaul nothing will change. Individuals may pay lip service meanwhile we at the coal face (or most of us) have to do the work ourselves. Two and a half years from diagnosis and I would bet a small grandchild that the Practice nurse I saw is giving exactly the same duff (some would argue dangerous) advice whilst her patients queue up for various treatment wrt to complications.

I would say dangerous is more apt. Actively encouraged to eat starchy carbs is like putting peanuts on the plate of someone with a nut allergy in my opinion

 

[Debandez]

Okay. It has been bad for some of us in the past. Me included. But currently have things improved? I know our local NHS GP Admin lady has been picking out those patients listed as having a condition of Prediabetes and establishing contact with them.

She is a keeper. But I dont feel so many go down this road going off comments I've read on this and other forums sadly.

 

[Debandez]

Top down and bottom up can and does work. Look at what Debandez is achieving.

I'm just very vocal. Yes I'm running with every media opportunity coming my way as I feel every little helps. The biggest yet will be The Sun. A week of diabetes. Starting 24th. My interviewer seemed very focused on getting our plight out there. We have spoke or emailed on several occasions. If she has space she will be including my mum as an insulin dependent t2 (RIP 12 years ago) and her many diabetic complications, and my daughter who had gestational well controlled with low carb (avoided meds/insulin) may be included. I sent her my leaflet (the one my surgery are going to give to anyone that wants to lose weight the low carb way or gain better control of bs) and she Hope's to squeeze that in too.

The work I'm doing with my surgery I feel could turn into something big. It's a learning curve not just for diabetics but for drs and HCPs too. I can see on Twitter (I'm quite vocal on there too) many more health pros are catching on so I live in hope.

The more of us that speak out and share our successes the sooner we will achieve our goal I feel.

 

[Debandez]

There is an awful lot riding on the fact that changing guidelines means one's ego may be bruised and one's livelihood or legacy may become tarnished. Meanwhile, I am thinking 'If they are giving me advice that could cause actual bodily harm in the long term, getting it all wrong then what else are they getting wrong?' It does nothing to instil confidence in the medical profession. If Diabetes has done anything for me it has made me aware of the shortcomings in the system and my confidence in HCPs in general has fallen dramatically.

What else indeed. As well as shocking advice for her t2d my mum was offered thalidomide (a tried and tested drug!), my daughter given minocin for acne spots aged 18 that gave her drug induced lupus. They apparently should have been doing regular blood monitoring. I could write a book about the negatives.

 

[Debandez]

Not only here on DCUK and on Twitter (and probably on FB, I am not a fan of FB but I bet Deb is going on there shouting loud and clear that there is another way) but In Real Life. I have to take my hat off to the lass.

I'm.very active to say the least! My poorly BIL stopped me in my tracks for a while (dx t2d), I'm still looking after him every day in some way but im back on it now!!!