Just diagnosed Type2, almost no advice or help given!

stephiesut

Well-Known Member
Messages
61
I got given a meter by my nurse this morning, which I was quite impressed with, though she said the number of times I should be testing dont match up with how many test strips they are allowed to prescribe so I think I may have to find somewhere cheaper to buy extra from. I have the Freestyle Freedom Lite and the cheapest I have found so far is Lloyds pharmacy who charge £19.16 a box if you are diabetic (so minus the VAT). She nearly passed out when she was 'teaching' me to use the meter and my reading came up at 22.4 still, despite having nothing to eat and only one cup of tea all day! So the Gliclazide has been upped with a review in 10 weeks to see if that makes a difference!
 

World Hereafter

Well-Known Member
Messages
89
Type of diabetes
Type 2
stephiesut said:
I got given a meter by my nurse this morning, which I was quite impressed with, though she said the number of times I should be testing dont match up with how many test strips they are allowed to prescribe so I think I may have to find somewhere cheaper to buy extra from. I have the Freestyle Freedom Lite and the cheapest I have found so far is Lloyds pharmacy who charge £19.16 a box if you are diabetic (so minus the VAT). She nearly passed out when she was 'teaching' me to use the meter and my reading came up at 22.4 still, despite having nothing to eat and only one cup of tea all day! So the Gliclazide has been upped with a review in 10 weeks to see if that makes a difference!

Great news you were given meter and strips!! Though I'm astounded by your £19.16, as I was charged (50 strips for Freestyle Lite) £27.65 from Lloyd's pharmacy, on Sunday! Surely they can' be charging such varying rates in different placces within the UK?? I also checked other pharmacies in my area, and they were all £27-£30 range. That is a BIG difference! May I ask which area you are in (if you don;t wish to name the town/city, could you give an idea of region?). thanks!
 

teagan

Member
Messages
22
Hi i have also just been diadnosed with type 2 and was told that i did not need a meter and having my blood tested at the doctors every three months was enough, not happy with this i rang up a company called Supercheck [Apollo Medical Technologies Ltd]. They sent me a Glucose monitor kit and the price of their strips is £8.49 for 50 and the lancet is£4.50 for 200 and if i can get my doctor to prescribe them even better but this is the best price i have seen the more i try to find out about diabetes the more confused i am, i am going on a course to learn how to cope with Diabetes. Has anyone else got one of these monitors ?
 

World Hereafter

Well-Known Member
Messages
89
Type of diabetes
Type 2
Hi Teagan :)

thanks for the info on the "supercheck" montior.. have not heard of it, but I;m new to Diabetes so perhaps other members have used it? their strips sounds remarkably cheap!

Sorry to hear you've had as little help from your Doc's practice as I did.. still can't believe the astonishing lack of support/help offered on diagnosis. I'd have had more input and help if I'd gone in to GP's with this cold/chesty cough!

Anyway, at least you've found this forum like I did last week, it's been a goldmine of info, and helpful, supportive folks around.

Also, perhaps try and find out about DESMOND coures near you, they are also on www, or your local hospital may run courses. I'm on waiting list here, could be a few months away.
 

bluehaze14

Newbie
Messages
4
Type of diabetes
Type 2
Hi

I'm so sorry you have had such a bad experience but I am not surprised. I too was given no advice just given leaflets to read.

I did have my feet checked and my eyes also. I have background retinopathy. I have just done a six week Xpert course which has just started in our area and is run by a specialist diabetes nurse and a dietician. I found this very helpful as you could ask questions about anything. I am Type 2 diet only. I have seen the dietician and understood a lot more doing the course. We did one whole session on carbs and everything was fully explained, if you can get on this course my advice is do it. I have now lost weight, reduced my blood pressure and my HBA1C. I am also doing an exercise referral class in the gym. I have had a few blips and can't get testing strips because I am not on medication, I am a pensioner and can't afford to buy them but am fighting for this. I think testing is the key to managing your levels.

Please talk to your nurse and doctor I spoke to both after I felt lost and alone and when I told them how they made me feel I was then listened to. I now know a whole lot more than when I was first seen (Aug 2012). This forum is great and I have found it very helpful with questions that pop up all the time.

I wish you all the best and hope you will get some positive information and help from your health team.

Best wishes Hazel xxx :D :thumbup:
 

Deb13

Member
Messages
13
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Having diabetes
Hi. U say your blood sugar was high and u didn't eat anything all day. U have to eat at least 3 times a day and maybe even snacks. Your liver will produce its own glucose if u don't eat. I believe have a diet with low carbs. I tried no carbs but i didn't have any energy and my blood sugar was still spiking because if the glucose released from liver. I am still battling. Good days and bad. But low carb diet and walking seems to be the best for me
 

stephiesut

Well-Known Member
Messages
61
World Hereafter said:
Great news you were given meter and strips!! Though I'm astounded by your £19.16, as I was charged (50 strips for Freestyle Lite) £27.65 from Lloyd's pharmacy, on Sunday! Surely they can' be charging such varying rates in different placces within the UK?? I also checked other pharmacies in my area, and they were all £27-£30 range. That is a BIG difference! May I ask which area you are in (if you don;t wish to name the town/city, could you give an idea of region?). thanks!

Hi, I am in Milton Keynes, but the price I got was from the Lloyds website! The usual price is £22.99 but with the VAT taken off they are £19.16 (and they wont charge the VAT on them if you confirm you are diabetic at the checkout) And they give free delivery if you spend £35!

Heres the link if that helps at all

http://www.lloydspharmacy.com/en/freest ... rips-35076

I think pharmacies charge a premium for this sort of thing as they know the NHS are reluctant to issue them and yet people want to be able to test.
 

AliC

Member
Messages
13
Hi World Hereafter and everyone else

I was drawn to this thread by the title, as I was diagnosed with diabetes in 2010 after some sugar showed up in a urine sample whilst I was getting checked for something unrelated. I went for an OGTT and six weeks later after thinking no news is good news, I got a letter from my GP's practice in the post saying the diagnosis was diabetes. That was it.

The lack of "here's what happens next" etc., was astounding for such a dangerous problem, and if it wasn't for my wife who dated a Type 2 diabetic on insulin for seven years throwing her toys out of the pram, I wouldn't have even cared and just shrugged my shoulders and got on with what I'd been doing.

Several years later and I've moved house a few times and attended two different GP practices since, and as an example, only earlier this year have I even heard of retinopathy and gone for an eye exam for it.

I think this experience isn't necessarily typical, but is hit and miss depending on the GP practice you attend. I would also add that the way I was contacted to tell me I had this problem made it very easy to be in denial about it, so I am not fully laying blame on someone else for not hearing of retinopathy. I am also still in denial I reckon, as the only test that ever showed any problem whatsoever was the OGTT, and this is reinforced today by my reading that you're supposed to have a second one, which I never did.

Some advice I was recently given by a heart consultant I saw due to palpitations really struck a chord with me. After I mentioned my in-denial attitude towards the diabetes, and the fact the figures didn't particularly back it up and I was confused by the whole thing, he said, you have diabetes, or you are pre-diabetic...what's important is that you have a pre-disposition towards it, and you are 39 years old. Your mum has it, you're at risk of it. You're at risk of other things that everyone else is too that are unrelated to diabetes. So, you have figures and measurements, but ultimately, what you can do is take care of your health, do things in moderation, and make good decisions about diet and lifestyle.

Personally, this advice has helped me process things, and whether in denial or not, I am gradually getting more serious about taking lasting action towards a healthier lifestyle, by exercising, watching what I eat, and more actively trying to lose weight. This is ultimately a good move whether I have something wrong or not. I am paying attention to the diabetes too, and understanding how that affects me.
 

Indy51

Expert
Messages
5,540
Type of diabetes
Type 2
Treatment type
Diet only
Welcome to the forum AliC.

Although you're not newly diagnosed, I think you'd find much of the information in the introductory thread to be useful. You can find it here: viewtopic.php?f=39&t=26870

And they wonder why so many diabetics end up with complications - if you're not given the knowledge, how are you supposed to know?

Glad you're beginning to lose your denial about your diagnosis. Personally, finding out and getting control of it has been very empowering for me :)

Again, welcome aboard!
 

World Hereafter

Well-Known Member
Messages
89
Type of diabetes
Type 2
Just a quick update!

Went to see my GP today, due to symptoms and last week receiving first Hba1C results (8.4) and cholestrol (5.9) via receptionist!

Am so angry and despondent and upset. My GP has always been really great, but it seems when it comes to Diabetes, he's had a personality transplant. I'd even taken my partner along this time, just for some moral support, yet this didn't seem to detract from his insistence that everything is "normal" and totally dismissing my concerns.

Firstly, he INSISTED my BG readings are "perfectly normal" (like I said, Hba1C 8.4, daily spikes after calorie-counted, low carb meals is still 12++). When I quoted the 7.8 threshold for damage he insisted that was "incorrect".

Second, he REFUSED to look at my food diary or meter readings, instead, telling me that I needed to eat "plenty of vegetables and reduce calories". My partner almost laughed out loud at that, as I eat LOADS of veg!! When I tried to show him my food diary (daily record of everything passing my lips for past YEAR - including calorie count and Gi rating and WAY more than '5 a day' of Fresh Veg and fruit) he got quite terse and impatient with me, and turned away and started printing off reams of paper from his PC. As he did this, I tried explaining my confusion about diet for Diabetes, as the PNurse told me to follow Low Gi plan, and I explainedI've been doing that for 10 years yet STILL ended up Diabetic, so that obvioulsy doesn't work for Diabetes! This led to comments from him about how even his Vicar does not have all the answers to life's injustices. :(

Thirdly, was told that the ONLY way to reverse or stop T2 Diabetes is to "starve the Pancreas of fat" by following the Newcastle Diet (he then handed me the reams of paper he'd printed off!). Told me to eat under 800 Calories per day. When I tried to chat about the Low Carb diet, he immediately cut me short with "that's never going to work". He told me several times the Newcastle Diet is "the only proven study" of how to "reverse diabetes".

Fourthly, he absoutely flatly refused to give Test strips, even for first 3 months (I'd requested "to see which food affect me most" etc.) and even though I told him my commitment to self-managing "will do anything" to avoid complications in future and didn't wanjt to be future "burden" on NHS resources etc. etc. He flatly refused. I told him I felt really despondent about that, as I cannot afford the strips, to which he made some comment about the NHS not affording them either! I told him I felt annoyed that there are people up and down the country flogging their unused "NHS paid" strips on eBay, yet people who are newly diagnosed and genuinely want to test to get their levels under control are refused. He just said "Don't start me on that!". He then told me, quite forcefully (obviously fed up of me and my requests and questions!) that there is absolutely NO evidence that self-testing works for T2's, and went as far as saying "absolutely NO need for Type 2's to test their Glucose".

Finally, when I broached the subject of my feet, and some other symptoms i've had past 5 years which fit Diabetes (dizziness, shakes, feeling faint, nausea, foot and leg pain/numbness/tingling etc.) he was absolutely adamant that NONE of these were ANYTHING to do with the Diabetes, and was absoutely insistent that I HAVE been previously screened for Diabetes "regularly" - yet I KNOW that I have NOT had a BG blood test (fasting or other!) in over 6 years!! He said if the symptoms continue, he will refer my for an EEG, as it will be my heart and "nothing to do with diabetes" !! :***:

I have come home feeling VERY fed up and like my previously good relationship with my GP is now ruined, and on top of that, feel totally unsupported and like the GP/Nurse just do not care about Diabetics.

I feel like I am totally on my own in this (as far as NHS/GP goes) and my partner is furious at the lack of help and how GP dismissed all my concerns and made me feel like I'm totally thick and fussing over nothing.

:( :x :thumbdown:
 

Daibell

Master
Messages
12,652
Type of diabetes
LADA
Treatment type
Insulin
Hi. You have my sympathy. I'm afraid this is fairly typical of many GPs. My diabetes GP who is otherwise a good GP, also has a change pf personality when being challenged on any thing to with db. I was told she had 500 diabetes patients hence knew what she was doing (and hence I didn't). The NICE guidelines which I guess you have read but can be downloaded from the NICE/Diabetes NHS website define acceptable HBa1C levels and GPs are expected to be guided by these. I don't understand why the GP was talking about the Newscastle diet. I don't advise anyone to follow a 'branded' diet. Low carb and low-GI carb will help reduce bs levels. Fat has little impact and I'd like to see the evidence that fat affects the pancreas; that's an new one on me. Most GPs won't provide a meter and push the mantra about not needing to test. At your HBa1c levels you really do need to test to determine which foods affect you most. NICE has guidelines on T2 testing by the patient. I do tend to agree with your GP that some of your symptoms you list normally have little to do with diabetes e.g. dizziness, shakes, feeling faint and nausea. However leg pain/numbness/tingling could possibly be early neuropathy and should be checked. Did your GP do a foot response test checking for neuropathy; mine does annually.

BTW as I think I mentioned previously steroids can have a big impact on bs and ultimately might mean a move to insulin if the bs levels go to high. I'm assuming you are not young and under-weight as this might imply LADA rather than T2 but I guess the steroids are sadly one of the high bs causes
 

GraceK

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WorldHereafter ... you should ask to see another GP, take a copy of the NICE Guidelines with you and perhaps you could also copy and paste your post below into a letter to your PCT. From the way you describe some of his attitudes and comments I'd say he needs some help himself. Don't take that **** from him. It's not his job to be sarcastic to patients or to churn out platitudes. He gets paid far too much for that to be acceptable.

:thumbup:
 

World Hereafter

Well-Known Member
Messages
89
Type of diabetes
Type 2
Thanks Diabell and GraceK, :)

I dont really want to go down the complaint route, as normally my GP is good, and I also would be worried it would affect my future care from him/NHS. However, I did think about writing letter to my GP direct, outlining my concerns and including the relevant "research" (he seems to only go along with evidenced material/quotes from scientifically verified sources!!) and putting it in the context of how confusing it all is.

I looked over the Newcastle diet stuff he printed out, says under 600 calories per day!! :shock: I thought that medical wisdom stated that such "starvation" level diets are terrible for health and actually PROMOTE fat storage as your body goes into survival mode?? Am quite shiocked he suggested this diet!!

I'm going to try and wade through the NICE guidelines at some point this week to find the pertinent points to take along with me to Practice Nurse appointment.. see if I get any further; and will also be insisting on foot and eye checks.

I've not been on steroids now for over 12 months (though the Rheumatologist wants me back on them - including Infusions - their new "toy"), though am seeing him again today for another battle of wills about me refusing any more steroids.

In the meantime, my partner has kindly ordered the Codefree meter for me and 100 strips, so I can keep on track with self-testing. I find the testing motivational apart from anything else, as I've been sticking rigidly to my Low Carb (<125g) Low Gi/GL, Calorie Counted (<1400) eating plan sincce getting a meter, and have lost 7lbs in 2 weeks!! YAY!

p.s. Diabell, no, am no spring chicken, LOL. Am 46 (but feels like 76 some days, no kidding) and was fit and active and trim until got ill and rendered immobile with host of symptoms in 2006 (originally they said was Lupus, then MS, then Fibromyalgia and so on). Despite being on Gi eating plan all that time, have put on almost 5 stone since then.. most around belly.. not good.
 

Indy51

Expert
Messages
5,540
Type of diabetes
Type 2
Treatment type
Diet only
I would seriously suggest you check out the Paleo/Primal diet. So many auto immune diseases are caused by wheat/gluten that it's scary. Please try eliminating grains for at least 21 days and see if it makes a different to the way you feel. Here's some information on gluten sensitivity that is well worth reading:

http://www.marksdailyapple.com/how-comm ... z27ce31Vya

The 7 most common food intolerances are: eggs, corn, gluten, sugar/sweeteners, dairy, peanuts, soy.

The especially worrying food/s will probably be the one/s you think "I couldn't possibly give up ........." That's usually a dead giveaway that you have a problem with that food.

Soy is another particularly worrying food when it comes to auto-immune issues:

http://www.marksdailyapple.com/soy-scru ... z27cdEpxr2

As well as reading the articles, if you get the chance - please also read the comments section where people tell their own stories about the wide-ranging effects these foods can have. It will blow your mind :D
 

Indy51

Expert
Messages
5,540
Type of diabetes
Type 2
Treatment type
Diet only
Oops, forgot to mention:

We used to have a poster who successfully completed the Newcastle Diet. She's lost around 98 lbs in total and now follows a LCHF diet, similar to this site:

http://www.dietdoctor.com/lchf

The thread about her experiences on the Newcastle Diet is here:
viewtopic.php?f=27&t=28731

There is actually very promising research to show that the Newcastle Diet can be a very good intervention for diabetes and it appears to be a quick and effective method of normalising blood glucose levels and losing weight so I hope you haven't thrown away the printouts the (extremely annoying and condescending) GP gave you?

Here are some more links if you're interested in finding out more:

The diet: http://www.ncl.ac.uk/magres/assets/docu ... ecipes.pdf
Press office: http://www.ncl.ac.uk/press.office/press ... J6VgGd26bI
Prof Taylor: http://www.ncl.ac.uk/magres/assets/docu ... 2study.pdf
Doctor's notes: http://www.ncl.ac.uk/magres/assets/docu ... torsRT.pdf

I guess the one advantage of doing the diet is that you would have your GP's support (and it does need to be done under a doctor's supervision) - and it sure doesn't sound like he's being supportive about much else :evil:
 

AliC

Member
Messages
13
Hi World Hereafter

The way your GP was was bang out of order. Sorry to hear that.

If you were interested in going down the route of complaint, you can also contact the patient liaison service (PALS)

My wife did some work for them at the NHS and they take the complaints seriously. She also said that when she has been a patient herself and once mentioned PALS to someone when she felt she wasn't being adequately supported, she noticed a change in their behaviour as if they were like "ooh I better knuckle down and do this better".

I don't want to suggest you should use it as a threat - far from it, just that it's an option if you needed another. If you like your GP which it sounds like you do generally, then maybe go through it again with them and you might catch them having a better day. Maybe the letter would help - I guess you have nothing to lose in writing that either way. They're human too, and I would imagine under huge constraints with budgets and economic **** etc., when they probably just want to help people.

I dunno man - that sucks - but hey you can vent here too :)


PS. Indy51 - thanks for the welcome!
 

GraceK

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Unfortunately, many of us 'like' our GPs, it's only natural if most of the time they're fairly civil to us, but I think in cases where anyone feels they're not being listened to, or are being patronised by their GP ... particularly when you have a genuine concern over a serious chronic medical condition, then it's time to stop liking them and get yourself a GP that doesn't treat you like a moron.

Sorry about the bluntness, but I don't do niceness where arrogant GPs are concerned and especially not today with that pratt of a GP/MP linking diabetes with doughnut eaters!!! :x
 

izzzi

Well-Known Member
Messages
4,207
Type of diabetes
Treatment type
Diet only
Hi, World Hereafter :)

You should write to your GP. However keep it simple as it is important for a clear message to get through to your GP.

It is a no win situation, nevertheless your message and others will eventually hit the system.

Must admit the EEG Referment did sound a bit harsh yet may still prove something good.

Sounds like your Doctor may be a part timer (Doctor P Lee comes to mind).

Thank goodness we still have some good Doctors where I live.

Best of luck.

Roy. :) :)
 

X-entricity

Active Member
Messages
37
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Regretfully for some people, no matter what they have done or do, they still get type 2. It can be genetic or just built in you. I was diagnosed last December and I was in a state of shock and probably didn't hear half of what I was told. My wife and I went on a days course to Hereford and everything was explained clearly. It will take a few weeks to get your head round it all but it will come. This site is full of good information and there are some really good books on the subject.
 

Dipstick

Member
Messages
12
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.