Just diagnosed Type2, almost no advice or help given!

[World Hereafter]

Hello !

I am so glad I found this website and forum!

I was diagnosed yesterday, Type 2, by the Practice Nurse at local GPs. It was rather a shock, as I'd gone to my GP weeks earlier with awful pain behind ribs, vomiting, extreme bloating and tummy aches, dizziness and fever, and was told it might be gallbladder related and he’d arrange “raft of blood tests” (incl. Fasting Glucose) and scan of gallbladder, liver, pancreas etc. I’d heard nothing back from GP over a week after having all the blood tests, so thought everything was normal, although still awaiting scan.

Than a few days ago I was called by Receptionist at GPs, telling me I had to see the Practice Nurse in the Diabetes Clinic. I asked if that meant I was Diabetic, and was told curtly “I’d assume so!” :shock:

On seeing the Nurse yesterday, and being given a confirmed diagnosis of Type 2, I was even more shocked at how very little help, answers or support were given, apart from a basic NHS booklet “My Diabetes”, being told to “eat a healthy balanced diet, exercise regularly and lose weight”; being told I had probably been Diabetic “for some time” prior to diagnosis, being asked “you do understand this is a progressive disease?” and finally being given a form for Hba1C blood test, weight & BP measured, and another appointment made for three weeks-time!

Almost every question I asked was met with vague/evasive answers “we’ll go over that another time” or “we’ll see how things go” or “we can look at that in the future” etc. I even had to ask for the actual results of the Fasting Glucose test which had led to me being diagnosed in the first place! (8.7 it turns out). I also asked if I need medication? … “you will do soon” and if I need to self test? … “not yet”. Even my explaining that I was confused about how I could be diabetic, as, in spite of now being overweight due to other serious illness causing 85% immobility past 5 yrs, and masses of steroids/opiates for pain etc., I have always had a very healthy diet – was vegetarian for 20 years, although now eat fish and limited white meat, but I’ve been a fan and avid follower of the low Gi eating plan for at least 10 years. Her response? “That’s good!”. :eh: :roll:

Am I unreasonable to have expected to be talked through everything, or at least had a basic explanation of the treatment plan, or what happens next, or symptoms to watch out for, or what to expect in the future??

I hope other people have had more informative, supportive and helpful introductions to the news they are now diabetic! I for one have been left rather shocked… it feels like I’ve been hit with this diagnosis, then left to fend for myself to find all the answers/help I need. To have to wait a further three weeks for my next appointment, with so many questions and concerns is really not very reassuring.

No doubt I’ll be spending a lot of time on this forum reading through as many posts as possible over the coming days/weeks/months, trying to find answers and advice. Thank goodness for this website & Forum!!

Anyone else experienced similar? Or anyone got any advice on how or where I can get more help or support, e.g. offline resources?

:wave:

 

[Indy51]

Your experience sounds absolutely shameful, but unfortunately the story seems to be becoming more common.

You can read the basic information for newly diagnosed members here:

viewtopic.php?f=39&t=26870

Welcome to the forum and I'm sure you'll find lots of information and support here. Come back and ask specific questions as you need to.

Best wishes,

 

[zoecrean]

Try this link

http://www.diabetes.org.uk/

loads of useful info and contact details for help too, I would have suggested the DAFNE nurses as they are wonderful but I think that is only for Type 1

Best of luck

 

[World Hereafter]

thank you both.. I have looked at the Newbie Info links, a good basic introduction.

Think I'll be doing little but reading these forums next few weeks!

 

[suffolkscouser]

So sorry that you have had such a raw introducion to Diabetes! Only having had a diagnosis for a month myself I'm amazed at the help I've been given by my Diabetic nurse. There seems to be a huge amount of info out there, I can't understand why you haven't been given more info and help!
With a reading of 8.7 is actually not bad at all, mine was 15!! Although with metformin I'm now down to 5.3 today!
Keep reading this website, it really does have soo many of the answers!

Steve

 

[World Hereafter]

Thanks Steve,

I have to say, normally my GP practice is excellent, and that's added to my shock at how this was handled. I was thinking earlier, my appointment was at lunchtime...hmmm... perhaps the Nurse had low blood sugar ?! :lol:

 

[izzzi]

Hi,World Hereafter


My nurse is very good and helpful, She listens to what I have done regarding my Diabetes, luckily she does not go down the tell me what to do route, She also admits there is a lot to learn regarding type 2 diabetes.

It was also my Doctor that recommended me to look at this Webb site, however he did say sometimes you may get carried away with to much information.

All this tells me that not is all bad at the NHS.( am I being a bit of a creep )

My simple point is that I would not have found this forum which has brought me back in control if it was not for my NHS Doctors recommendation.

“To do what nobody else will do, a way that nobody else can do, in spite of all we go through; is to be a nurse.”

Roy,

 

[hallii]

I note your prescribed use of steroids, it is well known that they can cause a rise in BGs, whether this is the case for you or not can only be discovered by testing, and that's something you might mention to your doctor.

Your doctor probably knows all about steroids and the side effects, but sometimes they forget :wink:

H

 

[World Hereafter]

thanks hallii, good advice, tho' I should say, haven't had any steroids past 12 months (I refused any more, due to being given so many over past 5 yrs, with little noticable benefit to my condition/pain, yet they did contribute rapid weight gain!).

 

[Etty]

Welcome, World Hereafter, here's another website you might like to rootle around on: http://www.dietdoctor.com/lchf
I think many diabetes nurses and dietitians must be off their stride at the moment, with so many patients insisting on following a low carb diet, while they (the dietitians) must follow guidelines and recommend a different diet.

 

[phjones55]

:shock: unfortunately I have also had the same treatment,I saw my DN yesterday,and was asked if I recieved the NHS leaflet on diet,told that when she has more time she would carry out a foot pulse least I thin that hat she said,she said I will need to see a eye specialist I have an appointment end of jan,oh when I asked about eating to the meter that was dismissed out of hand,"if you want to get one for your self its up to me but metformin will control my diabetes she then said that she had forgotten to tell me to bring a urine sample and could I give her a sample now,to test if my kidneys were leaking glucose,least I think thats what she said...

 

[stephiesut]

Thats a shame that your surgery are a bit rubbish.

I got my diagnosis at an emergency gp appointment, so the standard 5 minutes allocated didnt come close to answering any questions I may have, and I just walked out with a prescription, and told to make an appointment with the diabetic nurse. That appointment took 4 weeks to get, but once I had seen the nurse things were much better. She did all the relevant blood tests, weight checks, foot checks etc, and was more than happy to answer any questions I had.

I was also booked in for a Desmond course (dont know if they have those everywhere or not) and within 3 months of my diagnosis had also had the eye screening done (had it last week, clean bill of health there) And at my second nurse appointment I also got the flu and pneumonia vaccinations too. My surgery give 30 minute appointment sessions with the nurse for diabetics. My husband is also type 2 and he was given a blood glucose monitor and a repeat prescription for the strips (something which seems to be quite rare for type 2's these days) and since my gp said I need to test regularly now I am hoping to get the same next week at my next nurse appointment! We will see though...

 

[World Hereafter]

thanks for all replies...

have begun reading through the forum (slowly but surely!) and thers's so much info, it's quite a lot to take in!! Am still confused as to how I've ended up Diabetic when been on Low Gi plan for 10 yrs.. but I suppose our bodies change as we age, and I wonder if some Type 2 might be hereditary (Aunty had Type 2 and passed away from Pancreatic Cancer).

Think I'll give the nurse the benefit of doubt and just wait for my second appt. (in 3 wks) and see if there's an improvement re: giving info/answers... perhaps she was just trying to introduce me to the world of Diabetes more slowly than other Nurses.

Nothing was mentioned about Feet or Eye checks either, so I'll be asking about those too, as well as trying to get them to supply me with a self-testing monitor/strips - just looked online and those strips are expensive! :shock:

Thanks Etty for that other website info too!

 

[Dede]

So sorry to hear about your experiences.

I am off to see my GP tomorrow at my request, to seek medication. I was diagnosed two years ago with diabetes type 2 and after asking about my eating habits I was told that my diabetes should be controlled by diet alone. I eat quite healthily, little meat, some oily fish and plenty of fruit and vegetables. I have however, got a sweet a tooth and I enjoy a glass or three of red wine several times a week. I am over weight and have struggled to lose weight over the lat 15 years by diet and exercise and have only had success on extreme regimes such as the Cambridge Diet.

I have recently moved house and registered with a new GP practice. I have had blood tests at my request as I have been very low on energy and just wanting to rest all the time (not possible with a 10 year old child and a full time job). My GP was very nice and told me everything had come back fine, I didn't pay too much attention to the figures as he had said it was all fine. (I will get them tomorrow and post them with my next update). I felt relieved that my GP thought everything was fine but also surprised as I really do feel 'unwell'. I then had an specific 'diabetes appointment' with a specialist nurse who took one look at my recent bloods and my general profile and instantly said that I should be on medication to protect my cardio vascular system and duly sent off a strong email to my GP expressing her views. She explained that this was a progressive illness and that being on medication could give me an extra 10 years of life (I am currently 47). She expressed her view that it was ridiculous to suggest diet control only when clearly my diet had still allowed the diabetes to develop and get worse, (which seemed to make sense). I am left confused, but hopeful that there is the possibility that I will feel better soon and hopefully have the energy to start exercising again and to hopefully start to feel in a bit more control. I will post again after seeing my GP.
Dede

 

[World Hereafter]

thanks for your reply Dede, it's helpful to hear other people's experiences. Sounds like you have a good Nurse who is inerested in being pro-active in helping protect your health! Hope it goes well with your GP!

It amazed me to hear my nurse musing that quite a few symptoms of my "mystery illness" (her words!) of past 5 years very clearly match Diabetes symptoms .... yet I had never been tested, in spite of having so many signs - such as regular protein in urine, regular infections, recurring dizzy spells, recurring UTI's, rapid weight gain, Boils & chronic itchy/sore skin, extreme/sudden fatigue (yet I used to be out weekends hiking, swimming, dancing, Gym etc. prior to this illness), plus shakes, weird fuzzy headaches, regular numbness in hands and feet, terribly dry mouth (even my Dentist commented), constant thirst, plus I've developed kidney and foot problems last 2-3 years. Yet, I'd been told by more than one Doc that these symptoms were "probably hormonal" (I'm mid 40's and just had early menopause) and also been diagnosed with "extreme fibromyalgia" by hospital consultant. Not one Doc or Consultant or Nurse suggested or thought to check for Diabetes.

This has all happened while I was on a long term low Gi diet, which is why I now find the whole Gi/Carbs issue somewhat confusing, and am left wondering what on earth I should be eating, as I seem to have developed Type 2 Diabetes, and put on loads of weight, whilst being on the Gi plan 85% of the time for the past 10 years! Yet this same diet is the one I was told to stick to! :crazy:

I'm sure the learning curve for many of us newbies is going to be rather steep and eye-opening over the coming weeks and months!

 

[Chatterbox]

Hi World Hereafter

I had a simillar experience to yours and was diagnosed about 3 weeks ago. It really throws you doesn't it?!

If you are offered a DESMOND course snap it up as it was most informative and other newly diagnosed people were there sharing their experiences.

 

[World Hereafter]

hi Chatterbox,

yes, it is a bit of a shock! First getting diagnosed, then the almost total lack of information/answers!

Thanks for tip on DESMOND - I shall add it to my long list of Q's for next appt!

Hope you have found some useful info and answers in the 3 weeks since your diagnosis?

 

[Hrw1959]

Hi, I was diagnosed near the end of September and had a bit of a rocky start. I had my biannual eye test and was told that there was some yellowing of my lens and advised to get a cholesterol check at my drs. I made the appointment and was told when I went for the blood test, that they were doing a lifestyle check as I am over 50. When I rang for my results they told me my cholesterol was slightly raised but I had to have a fasting test as they couldn't do the glucose test. When I went for te results my dr came out with a sarcastic remark about me not needing an emergency app, then when he looked at the results he told me " oh well now we know what's wrong". I expected him to say tat I had high cholesterol and I ad to diet and excercise, which is difficult due to my other health issues, and was shocked when he told me that I ad diabetes and that my BG level was 16.9. He then went onto say that he would leave it to another dr to deal with me, and that I would end up on medication then on insulin. And tat was it, I was so confused and frightened and also quite annoyed at his attitude.

I now see one of the other drs at the surgery and he has been amazing, sadly the so called diabetic nurse has not. I was put on Gliclazide as I cannot take Metformin and at te moment test my BG levels before meals and it is working. I still have loads of questions and can honestly say that this forum has been amazing. I have had my feet checked and my eye scan done and have seen my dr weekly.

Take each day as it comes, there will be ups and downs but don't hesitate to ask questions, there are so many helpful people on the forums and they have helped me in so many ways...no question is unimportant or to big.

 

[Daibell]

Hi. When you say low-GI does that also include keeping the overall carb intake low; perhaps 150gm/day or less? If it's just low-GI but a high intake then you might see weight gain. Perhaps you can give us some idea of a typical daily meal plan? The steroids will, of course, have added to weight gain but you say you stopped those a year ago?

 

[World Hereafter]

hi again and thank you to all who replied with help and some answers.

Haave contacte the Diabetes Centre at local hospital, who are arranging to get me on DESMOND in the New Year, and have also sent off for couple free meters, although I will still be asking Nurse/GP for strips/lancets, as am living on a shoestring as it is.. how can they justify those prices for testing strips?! What a rip-off.

Anywy, am still trying to get my head around the whole LCHF thing, and to be honest, I'm finding it VERY hard to accept the High Fat bit, especially as there's a very strong family history heart attacks and Heart Disease (3 grandparents died of heart attacks in early 60's, plus both parents, 2 uncles and 1 aunt all serious heart probs/heart attacks/bypasses etc.) so have spent most of life avoiding high fat anything, eating more than 5 a day, and watching my weight. Hence I've been doing low Gi and not 'Atkins type' for years, and sticking to around 1500-200 calories, yet have still ended up gaining 5 stone in 6 years and becoming Diabetic... poss. that's becuase I did used to be very active til I got ill 6 years ago (with other things) and mobility went from high to zero overnight!?

I see, from reading on here, that many of you do LCHF but I just don't want to risk heart problems on top of Diabetes and everything else I already have to boot! It's all rather confusing to be honest.. am beginning to wonder if I should be eating anything at all besides salad and veg!! :think: :