Just diagnosed Type2, almost no advice or help given!

GraceK

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Dipstick said:
Re just newly diagnosed:

I developed diabetes from prolonged use of steroids for asthma. Did they give you a blood testing kit? I got most of my information from this site. I am lucky that my GP is very pro-active in this area. Read as much as you can and you will soon not feel so overwhelmed. Good luck.

Dipstick can I ask you how your doctors came to the conclusion that your diabetes was caused by prolonged steroid use?

And was it steroid inhalers or tablets or intravenous? The reason I'm asking is that over the past 3 years I've had to be hospitalised for asthma and severe allergies several times and I've had to have all three types of steroids but no-one has suggested any cause of my diabetes whatsoever. Causes didn't even come into the conversation. :think:
 

stephiesut

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61
My hubbys type 2 was classed as steroid induced diabetes. I dont think they did any extra tests to come to this conclusion, though he has to have 2 weekly blood tests anyway so they may have, but I think they just put it down to this as he has no family history, and doesnt fit any of the 'normal' criteria for type 2 (not overweight etc).

To be honest I think sometimes it is just guesswork on their part. Because he is on medication that can cause diabetes, thats why he got diabetes.
 

GraceK

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I really hope the Tory Moron is reading this thread. He might learn a thing or two. :|
 

Tootse

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Hi World Hereafter

I know exactly how you feel. I had very little advice from the Nurse after diagnosis. I also received my hba1c result 'satisfactory' from the receptionist. I asked her what satisfactory meant, she couldn't answer so I said I would like to see the doctor. All they would concede was have a doctor give me a call. When she did later the same day, the doctor said my blood test result was 51 so that means they did not have to prescribe test strips for me. She added 'Oh and you also have a fatty liver'. :shock:

After the great advice from this site, I composed a list of questions to ask, and made another appointment . Like you I was shot down in flames by a very terse nurse. I didn't even get to ask half the questions before she curtly suggested I leave as my 10 minutes were up!

I'm not sure what to do next. I have a 6 monthly blood pressure / medication check with the doctor next month and I feel so let down by it all that I don't even know what to ask anymore. :(

On a positive note, I see you have been advised to attend a Desmond course which I believe are for type one's. However, if you are living in the UK you are entitled to attend an 'Xpert' course, which is a 6 week (1/2 day) programme that goes through a useful guide book. You won't get much info on low carb diets (there is always this place and other site on the net), and what they do tell you about carbs you will already know, but you will learn more about diabetes itself along with what you should be entitled to. You can also ask questions which they may be able to answer.

Good luck and keep us posted.
 

CathyP

Active Member
Messages
27
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Tootse says "On a positive note, I see you have been advised to attend a Desmond course which I believe are for type one's. However, if you are living in the UK you are entitled to attend an 'Xpert' course"

In fact Desmond courses are designed for type 2s, Dafne courses are for type 1s.

You are entitled to a structured education course, not necessarily Desmond or Xpert. Not all areas provide courses with these names. In my area for example it is called "The Conversation" which is suposed to cover the same as a Desmond course.
 

Sid Bonkers

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Customer helplines that use recorded menus that promise to put me through to the right person but never do - and being ill. Oh, and did I mention customer helplines :)
GraceK said:
Dipstick can I ask you how your doctors came to the conclusion that your diabetes was caused by prolonged steroid use?

And was it steroid inhalers or tablets or intravenous? The reason I'm asking is that over the past 3 years I've had to be hospitalised for asthma and severe allergies several times and I've had to have all three types of steroids but no-one has suggested any cause of my diabetes whatsoever. Causes didn't even come into the conversation. :think:

Steroid induced diabetes is well documented Grace and is caused by long term use of Corticosteroids (Prednisolone) tablets often prescribed for COPD and other respiratory conditions.

I was given prednisolone in huge amounts intravenously whilst in intensive care and afterwards took 40mg (i think) for three years which led directly to my diabetes. It is listed as a side effect in the leaflet that accompanies pred.

As far as I am aware the steroid injections given to reduce inflammation and steroid inhalers do not have the same effect, as well as diabetes I also have bronchiectasis and COPD for which I take twice daily Seretide 250 which is the highest dose of steroid inhaler and it doesnt move my bg levels at all, the injections I have read on here can and do affect bg levels but only in the short term, not long enough to cause SID.

If your diabetes was caused by long term corticosteroid use then there is some good news as Catherine PM'd me a link a while back that stated that patients with SID were less likely to develop retinopathy, unfortunately I cant find that link right now.
 

World Hereafter

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89
Type of diabetes
Type 2
hello again and a big thank you to all of you who have been kind enough to reply and offer support/suggestions :) I really appreciate it so much.

I'll be spending some time this weekend pulling together the various quotes and articles I've gathered on use of strips for T2's and taking them along to my Nurse appt. next week. I am not holding out for a change in attitude from the "T2's do NOT need to test" I was told by GP, but I will at least be able to put some facts an figures on the table! I'm going to hold off doing anything regards GP until I see what happens with Nurse, and also because of the following....

I also saw another one of my hospital consultants last week (for different condition), who told me that my GP telling me there was "absolutely NO evidence T2's need to self-test" was "rather surprising". She said I MUST self test twice a day, morning/fasting and after dinner, as a MINIMUM. I told her hat happned at GP aand she was really understanding and empathetic, and was obviously annoyed about my experience with GP/Nurse so far, but also trying to remain diplomatic and professional, and convey that my erstwhile great GP is "probably as frustrated and angry" as I am, as all GP's are being forced to make drastic cuts in lots of areas, even when they don't agree with them!

She was very impressed and pleased with the research I'd been doing on Diabetes and how much knowledge I'd gleaned myself (I told her it was largely thanks to this forum!) and she was incredibly helpful, especially given I see her for something totally different! Seems she has LOADS of knowledge on nutrition (written several books on using diet/supplements to help other health conditions - so is "open" to not just using drugs to solve everything!) and she seemed to know much more about Diabetes than the GP/Diabetes cllinic Practice Nurse.

She gave me more info and answers than anyone else so far, also told me the Newcastle Diet was not a good idea (not for me anyway, with "various other health issues"), and that although the LCHF diet would "mess a bit with your chemistry" so I'd need to be careful, that it was "absolutely fine" as long as I had "enough healthy carbs and good fats only". I told her am doing <130g carbs and she said that was OK for my height/weight.

She also explained that the MOST important thing for overweight new T2's is to reduce the weight "as much as safely possible in the first 6 months, regardless of which diet" I choose to follow, saying that the first 6 months is the "only window of opportunity to actually reverse T2" and advised me to "act fast" to get my weight down (by at least 4 stone - saying this was the "vital factor" in determining what happens to newly diagnosed T2's in terms of the pancreas and Diabetes long term !

Very kindly she offered to be my "behind the scenes Diabetes Buddy" :D and has said she's going to write to my GP and recommend I am "seen monthly for Hba1C and other tests and checks" for the first year at least, due to the other illnesses and probs I have, saying she felt that the GP's/Nurse need to be more pro-active in helping me manage this, especially given I'm not being prescribed test strips. She also said the 24hr EEG my GP mentioned was probably ECG (my error!?) and that would be a good thing, given family history heart probs. I'll wait and see what happens if/when that letter is received by my GP!

So, as you can imagine, this gave me a HUGE boost and I felt for the first time like someone within the NHS actually cares (AND knows what they're talking about!). The final positive was her insisted on seeing me again in 6 weeks (not the usual 6 months!) to see how I'm doing and check up my progress... Bless her! :D

I just wish there were MORE like her in the NHS, so that everyone could get that level of care, knowledge and support, especially newly diagnosed, who it seems are increasingly being diagnosed then left totally 'in the dark' by their GPs/HCPs.

I wish you all a good weekend and hope you're all wrapped up warm in this chilly weather :D
 

Paul_c

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432
Type of diabetes
Treatment type
Diet only
World Hereafter said:
She also explained that the MOST important thing for overweight new T2's is to reduce the weight "as much as safely possible in the first 6 months, regardless of which diet" I choose to follow, saying that the first 6 months is the "only window of opportunity to actually reverse T2" and advised me to "act fast" to get my weight down (by at least 4 stone - saying this was the "vital factor" in determining what happens to newly diagnosed T2's in terms of the pancreas and Diabetes long term !

this advice to lose weight and get your act together should be made far more forcefully when they tell you you are pre-diabetic... then you have a real chance as your beta cells have suffered far less damage than when they finally tell you you are T2 diabetic...

I followed their NHS official dietary advice to the letter when they told me I had an impaired glucose tolerance and was pre-diabetic... I started eating the slow release carbs (wholemeal bread and brown rice and baked potatoes instead of mashed or chips. I went low fat everything...)... it still resulted in me becoming diabetic even though I was slowly losing weight on their diet...

PS. It's impossible to reverse T2 diabetes unless you get a pancreas transplant... once those beta cells have died, they never recover...
 

Covlocks

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I am glad I am not the only one who seems to have been treated in a pretty offhand manner.

I understand that these practicioners see people like us every day and get pretty "matter of fact" about it all but a little effort is all we should ask for.
 

littleme

Newbie
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I was diagnosed at the beginning of November and had exactly the same experience! I was put on Metformin after a fasting test of 11 but told I dont need to test my blood, I have looked at websites and read books but everything is very confusing :( No idea of what I should be eating ...
 

hanadr

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this tale is becoming the norm.It's not so new either.
I was diagnosed in hospital following a stroke in 2003 and have NEVER officially been told I'm diabetic, although it's obvious I am.
Hana
 

Daibell

Master
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Hi littleme

Hopefully you can find quite a bit of dietary info around this website; Daisy always provides a lot of links. Although the NHS discourages doing your own testing most of us do as it enables you to take control of the diabetes and know what foods affect you most. The NHS would rather treat the end-result of diabetes than do the right things early on; pretty silly really. The other main reason ref meters is the cost. As you probably gather the general view is to keep your carb intake under control and keep it low-GI. I aim to have no more than 150gm/day. 'Eat to the meter' is the sensible rule i.e. do what works for you in keeping your blood sugar down. Ignore any NHS diet advice about having starchy carbs with every meal unless you want to make your diabetes worse. Also many diabetes cook books are rubbish and even the recipes on the Diabetes UK website (.org not this one .uk) are often too high carb.

Hi hanadr, your GP needs to check whether you are offically registered as a diabetic on his computer system; mine forgot to add me initially. I think the GPs get paid for each diabetic patient. If you aren't on the system and he won't add you then insist on a GTT and/or HBa1C test. If you are prescribed Metformin that almost confirms you are assumed diabetic.
 

LaserMum

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Messages
72
Type of diabetes
Type 2
Oh, this is so similar to what happened to me a couple of years ago. So now, every now and then (about every 6 months), I get sent an appointment with the DN who tells me that I'm fat and need to lose weight but my blood sugar is OK. I'm never told what the results of tests are or anything else. They sent me for an eye scan. I keep getting told they'll check my feet 'next time' but they never have. I was supposed to get an appointment with a chiropodist that never materialised. I just go to the appointments, nod pleasantly, and ignore them. They've prescribed me Glucophage and statins but not really explained anything about them so I don't take them.
I've just given up. I'm tired as hell, not just from diabetes but sleep apnoea and hypothyroidism too (supposedly). I feel like the last 15 years of my life have just been one long nightmare :(
I hope you're experience improves, World Hereafter. If my symptoms are due to diabetes, I'd hate anyone else to go through this.
 

Daibell

Master
Messages
12,650
Type of diabetes
LADA
Treatment type
Insulin
Hi Lasermum. Your surgery is not doing it's job under NICE Diabetes guidelines. Either complain or move to another GP. The GP MUST tell you your HBa1C reading and anything else that is measured; you have a right to this information. Do take the Glucophage (Metformin). It's a good drug and does help with insulin resistance. If you have any stomach problems with it insist on the Slow Release (SR) version. The statin is only really needed if you cholesterol is over 5'ish. Again insist on the surgery telling you your current level. As you are overweight you must reduce your carb intake and have high fibre low-GI carbs. Do get hold of a meter and test you blood 2 hours after a meal and adjust the carbs to get below 8'ish. Good luck.
 

LaserMum

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Type of diabetes
Type 2
Thanks Daibell,

I hadn't noticed that this thread was so old! Maybe I should have posted a new topic. Thanks for your advice.
I've thought about getting a BG monitor but am not sure which is best to get - especially regarding value for money! I've seen several posts that say about how expensive the strips are so I know it's not only the initial cost of the monitor. I'd rather be able to check my levels myself so that I could at least take charge of this and know how I'm doing and what foods affect me to what extent. Maybe I'll start another topic to find out what monitors people have found best.
Anyway, thanks for your help. :wave:
 

Paul_c

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Messages
432
Type of diabetes
Treatment type
Diet only
LaserMum said:
Thanks Daibell,

I hadn't noticed that this thread was so old! Maybe I should have posted a new topic. Thanks for your advice.
I've thought about getting a BG monitor but am not sure which is best to get - especially regarding value for money! I've seen several posts that say about how expensive the strips are so I know it's not only the initial cost of the monitor. I'd rather be able to check my levels myself so that I could at least take charge of this and know how I'm doing and what foods affect me to what extent. Maybe I'll start another topic to find out what monitors people have found best.
Anyway, thanks for your help. :wave:

you do that girl!!!


post a hello topic in the newly diagnosed or greetings sections and Daisy1 will come along with the standard text for you...

Buying your own meter and strips is the first step in taking control of your diabetes... using them wisely to refine your diet and get your blood sugars under control is the next... things DO improve once you've got your sugars under control... you get decent sleep and don't feel tired all the time either... :)
 

World Hereafter

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Messages
89
Type of diabetes
Type 2
hi folks!

Hope everyone is doing well and managing to get the supoprt and answers they need!?

I've not posted in a while as was trying to get to grips with everything re: Diabetes and to be honest I got a bit overloaded with info after a few weeks reading tons of info on here every day and reading everything I could lay my hands on elsewhere about T2 :crazy: .

then Xmas got in the way of my best-laid plans, coupled with a cold/throat infection and then that snap of very cold weather... result was my daily carbs average crept up from mid December for 3 to 4 weeks... went from c. 120g to over 180g daily (although had nothing indulgent & no sweet stuff). As result, my BG levels went up again, and I re-gained 5lbs of the 1 stone I had lost since Diagnosis back in November :oops: :( At least this PROVED to me (and removed any last vestiges of doubt I might have had!) that CARBS affect BG levels and weight more than anything else.. in fact, the On-Track phone app graphs for daily BG levels and total daily carbs show the direct link between the two without ANY doubt!

6th January saw me get back on track with the low carbing, although am now hovering around 140g per day, but the weight is stubbornly refusing to shift (only dropped 3lbs in 4 weeks). BG readings have dropped a bit, but are still higher than before Xmas.. now at an average daily 7 or 8, whereas before Xmas was down to 6-somethings. Just shows what a few extra carbs each day can do.

I have yet to receive ANY appointments for the list of checks (Retina, Feet, Cholesterol breakdown, 24 hours ECG etc.) I was told I would get (by Practice Nurse at Diabetes Clinic before Christmas), so have booked an appt to go and see her again next week (as my first HbA1c is due soon too - yikes!).

Some good news though!! I did actually manage to persuade the Practice nurse (I went in armed with information I had printed off from here and other sources about self-testing !) to finally prescribe me some strips (even though GP had previously vehemently refused) ... anyway, she said I could have.. wait for it... 50 per month!! That means I can test 1.6 times per day ... woo hoo! :lol: :lolno: ok, tis better than nothing I suppose, but I really had to go loaded with info and quotes and had to do some serious battling and persuading and quoting NICE and Dept Health and so on.

I also went on the DESMOND course. Verdict?? oh dear! What an incredibly patronising and very, VERY basic (like they were talking to primary school children) experience!

First hour and half spent asking us all how long we've had Diabetes and what sysmptoms we have and what we think caused it.

Then at least an hour spent in a group activity having to "guess how many sugar lumps in a can of Coke" and other basic food items which were laid out on plates on a table.

Then we were told (for about half an hour) that it is "CALORIES and nothing else" that we have to watch in order to "lose weight and control your Type 2 Diabetes". The fact that some in the room were NOT overwight didn't seem to figure, nor did the fact some of us made clear we dont eat any sugary or junk foods and never have!

The subjects of Test Strips and Carbs was raised by one other chap and myself, but we were very quickly sidelined and our points and queries were very quickly quashed with ("no need for T2's to self-test as it's covered by annual HbA1c test") :crazy: These were added to a flip chart at the back of the room (out of attendees' view) of "Burning Issues" to be covered at the end "if we have time" (which of course, we didn't as the course was "not allowed" to run over time, by even 5 minutes).

The trainers/Nurses moved quickly onto how we "MUST" all eat "plenty of healthy starchy carbs" at each meal. :roll: I tried to point out that ALL carbs (not just simple sugars) raise my blood levels, and was quickly TOLD that this was almost certainly due to my "other health issues".... ***??? :***: :x When I mentioned I'd previously being on a low Gi diet for many years and yet still ending up T2, I was slapped down verbally with "low Gi is just a fancy term which means starchy carbs" !!! WOW! :shock:

Left the course feeling VERY frustrated and like they did NOT want their version of what T2's MUST do to be questioned. Also, I felt really sad and very concerned that over half the attendees were just taking it all in as though the DESMOND info is Gospel and the ONLY way to sort out their Diabetes i.e. have one Hba1c test per year (more often is "pointless" apparently!); Eat LOTS ("one third of plate!" :shock: !) of Starchy carbs (Potatoes, Rice, Pasta, Grains, Bread) at each meal; Absoutely NO need to self-test at all if T2; avoid sweets, Lucozade, Coke and other sugary drinks ('no s**t Sherlock'!?) ; and you MUST limit your calorie intake to lose weight.

Was also VERY noticeable how the fact that over 80% of the attendees said they had family history of T2, yet NO dicsussion or mention made of the hereditary factors as a possible cause of T2... instead it was ALL put down to weight (specifically belly-fat) and lack of exercise, even though several people pointed out they had previously been fit and healthy and their T2 was only picked up when being tested for other things.

WOW! If this is the sum of the "education" and support officially provided by the UK's healthcare system for T2's , then is it seriously ANY wonder hospital beds up and down the country are filled every single day with patients with Diabetic complications??? These complications must be costing the NHS WAY more to treat and manage than it would cost them to provide some test strips and correct nutritional info and proper T2 education in the first place??

I am speechless and incredibly saddened at how inept, ineffective and arrogant much of our NHS has become. And even more aghast that medical professionals seem to have forgotten one of the very the first rules of medical training... "LISTEN TO THE WHAT THE PATIENT TELLS YOU".
 

vonbon1

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Messages
83
Type of diabetes
Treatment type
Tablets (oral)
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Being sick 24/7
Hi and welcome to the site. I'm sorry you had such a bad experience. I myself was pretty much given a magazine, and told to come onto this site and not to get to paranoid about things untill I go to the "educational diabetes clinic in April. ( was diagnosed 3 weeks ago)
I went through my gp, to get a blood monitor so I know where I'm at with sugar levels.
as you say I have spent a lot of time just reading posts on here and have had a lot of help from the lovely people here.
:clap:
I'm sure you'll get as much information and help and a good laugh too as I have.
See you around the site :)
Vonbon1
 

Hoosaman

Newbie
Messages
2
Hi all i was diagnosed with T2 yesterday after having 2 blood tests. The doctor asked me why i was there & i informed him that i was after my results off the blood tests. He told me i had T2 & would see me in a months time. When i asked what i was supposed to do next he advised me to consult with the diet nurse on tuesday :-( leaving me very confused as what I'm supposed to do until i see her on tuesday.