Good-old NHS!

[tomcamish]

Evening All (or should I say morning as it's gone midnight?)

Yesterday I attended one of the local diabetes educational group session things to learn about Type 2 diabetes and to hear from a dietitian. Interesting stuff, and I learned something about the food I'm eating so I'm glad I went.

However, I've been doing pre and post-meal glucose tests, and at the end of the session I spoke to the diabetes nurse.

We had a quick chat about the changes I have already made to my diet, then I showed her the results of my glucose tests which I store in an app on my phone - for anyone looking for an app I would recommend the one I'm using - here is a link to it on the android app store, not sure about on apple.

Anyway, when I showed her the results of my tests, she looked at me, looked back at the results, looked at me again, her face pretty much like this - 😱 - then got out her phone. She then explained what she was doing - booking me an appointment with the diabetes specialist at my surgery "as soon as possible", as apparently my results are too high for her liking. Her worry was that I was actually type 1 and not type 2, as I'm "young and slim" (first time i've ever been called slim!).

So, yesterday afternoon I went to the appointment she had booked me, and the nurse I saw started asking questions such as:

When were you diagnosed? - about 6 weeks ago.
Have you had a urine test done since you were diagnosed? - no.
Have you had an eye test since you were diagnosed? - no.
Have you been given one of the diabetes info packs? - no.
Have you had your feet checked since you were diagnosed? - no.
What have you been told? - Not alot.

I explained to her that I went to the doctors as I was needing the toilet a lot, that the doctor booked me in for a blood test, then phoned me with the results telling me to repeat the blood tests, then phone with the results of them and said to do one more test, then phone with the results of that test saying he'd referred me to the group session I had just been to and that is all I've heard.

The nurse's response was "thats absolutely shite", and has reported it to her manager, and her manager's manager, because she is disgusted that I've been left 6 weeks with no treatment or support etc.

So, guess who's now taking metformin.

The nurse's response to the lady from the group session's worries that I may be type 1 was simply "if you were you'd probably be dead by now" - nicely put, although she was really helpful and apologised profusely for the fact that I've pretty much been ignored, and booked me in for all the relevant tests she said I should have already had done.

But that's not the end of it.

When I went to my local boots when I left my surgery to pick up my prescription, the guy in the pharmacy took me into one of the little "private consultation" rooms to discuss the side effects etc of taking Metformin, but also to express his concerns.

He basically said he thinks I'm too young (28) to have type 2 diabetes and that he doubts the metformin will make any difference, as it's more likely that I'm type 1. When I explained the lack of contact from the doctor his response was "that's f***ing ridiculous" (very professional). His thoughts are that they've put me on the metformin to try and control my sugar level while they do the checks they should have already done, which he thinks will likely show I'm type 1 and not type 2.

So to cut a long story short, the NHS suck - my faith in which was knocked considerably in December when I lost my son (long story) - there's 2 people who think I'm actually type 1, a nurse who is horrified about the lack of information and tests I've had, I'm now on metformin (1 in the morning and 1 in the evening) and expecting the fun-sounding side effects to kick in soon, and on top of all that my wife is freaking out as her dad is type 1 and she's well aware of how it effects peoples lives.

Rant over - anyone else had similar problems with the NHS?

 

[Northerner]

Hi Tom, firstly can I say I'm very sorry to hear about what you have been through with your son

Regarding your diabetes, good to hear that someone has taken action and that you are now getting the proper attention you should have expected in the first place. Unfortunately, it's quite common for people to get very little in the way of information and support when they are diagnosed. Some GPs and nurses are very good, and some are very, very poor when there is absolutely no reason for it.

People are often diagnosed based purely on age. Type 1 is most common in children and under-25s, and Type 2 most common in over-40s. This often leads healthcare professionals to use this very simplistic split to make their decision, along with other factors like being overweight and how bad your symptoms are.

However, Type 1 can be diagnosed at any age - we have members in their 60s and 70s, and I was diagnosed aged 49. What does tend to happen though is that the effects of the diabetes appear far less acute than in children where things can rapidly deteriorate, so in the early stages it can appear very much like Type 2. We have many members here who have been incorrectly diagnosed as Type 2, their treatment has failed and levels remained high despite dietary and exercise changes, and eventually it has become clear they are Type 1. There is a name for this slow-onset version of Type 1, LADA (Latent Autoimmune Diabetes in Adulthood). Sometimes it is called Type 1.5 and there are a couple of tests they can do to determine if it is this you are suffering from rather than Type 2 (the tests are GAD antibody and C-Peptide). Possibly, you have been given these tests now, so hopefully you will get confirmation of your diagnosis soon and appropriate treatment and monitoring will take place.

To be fair to GPs, it is complex and far from obvious in many people. I would probably have been diagnosed as Type 2 myself had I gone to the GP's earlier, but I ignored the symptoms until I caught a virus which sent me over the edge and I ended up in hospital with DKA - a usually very clear indication of Type 1 since it arises due to a lack of insulin rather than insulin resistance as in Type 2.

I recently approached Diabetes UK suggesting that they start a campaign to highlight the possibility of misdiagnosis in adults, particularly where some of the major risk factors are absent, such as being overweight or under 40. Healthcare professionals need to be made much more aware of the possibilities.

Let us know how things go. Maybe ask your nurse or doctor if they have done the tests I mentioned, and if not might it not be a good idea to do them? Good luck! 🙂

 

[KookyCat]

Hi Tom
I hope they come back with answers very soon and get the treatment sorted. Personally I feel the medical community have a lot of work to do to get diabetes care up to scratch, but hopefully they're moving in the right direction. If they don't move quickly enough don't be scared to push them. Type 1 in adults can be much slower as Northerner said, basically our immune systems are much less keen so it is harder to spot sometimes. That said I'm glad to hear Northerner is encouraging DUK to consider a campaign about misdiagnosis because I suspect it happens more than we know. Sorry you've had such a difficult time with it all, but hopefully better treatment is just around the corner 😱

 

[Amberzak]

You definitely sound type one to me. As others have said, it often comes on slower with adults than children. If you were a child, you would probably have been in hospital weeks ago. My friend's husband was diagnosed type one when he was in his 40s, and basically what happened with him was similar to Alan (northerner) in that he didn't bother going to doctors. He was very ill for weeks before my friend took him into A&E over a weekend.

I was diagnosed in hospital. But even though I have a diagnosis, I've still had GP's insisting I am type 2 just because I'm a large woman.

Keep letting us know how you are.

 

[Ralph-YK]

I went into hospital with a second bout of cellulitis (infection). Was asked if I had diabetes as infections are more likely.
Next day discovered I had cellulitis when one member of staff told another.
A couple of days later I was told diabetes test was unreliable because I had a infection.
Maybe a week later a doctor had to come round to say "you do have diabetes." As I recall, I was on tablets at this point.
That's all the information I had from the hospital on either, and I was there 3 weeks.

Got told by diabetic nurse "there isn't a diabetic diet" and "you're doing fine, carry on as you are." And a referral to Desmond because I asked.

Did Desmond in June. 1 day, 6 hours. (In itself, Desmonds is fine.)

That's it. All I've had.

Now, let me tell you about the dentist...

 

[tomcamish]

Something I didn't mention in my original post is that my blood glucose levels average around 12 to 15 with some spikes of 17 to 20.

The chemist and the lady at the group thingy both said they're too high for type 2 so hopefully I'll know what's what after my next blood test at the doctors which they want to do once iv been on metformin for 2 months.

Stupid question, what's Desmond?

 

[Laura davies]

That is dreadful the treatment you have received or rather lack of it! I hope you get it sorted soon and i am so sorry about your son. I lost my stepson 2 years ago and its dreadful. Your wife is right to be worried as if you are type 1 you need it diagnosed asap and treated accordingly. I had bad luck with NHS with chronic back pain, i lost my faith in them and went privately to have my 2 ops one being a spinal fusion i am now pain free. If it was up to NHS i would still be suffering

 

[Northerner]

Something I didn't mention in my original post is that my blood glucose levels average around 12 to 15 with some spikes of 17 to 20.

The chemist and the lady at the group thingy both said they're too high for type 2 so hopefully I'll know what's what after my next blood test at the doctors which they want to do once iv been on metformin for 2 months.

Stupid question, what's Desmond?

Desmond is a diabetes education course for people with Type 2.

Those numbers are too high, so no wonder the people you spoke to were alarmed Are they suggesting you don't have any more tests for two months? I think that is too long, personally - if you see no big improvements in the next 3-4 weeks I would go straight back to them.

Now the ball is rolling, let's hope they can get you on appropriate medication to get them under better control. I doubt that metformin alone will have much impact on those kinds of levels, and probably no effect if you are, in fact, a slow-onset Type 1.

 

[tomcamish]

Desmond is a diabetes education course for people with Type 2.

Those numbers are too high, so no wonder the people you spoke to were alarmed Are they suggesting you don't have any more tests for two months? I think that is too long, personally - if you see no big improvements in the next 3-4 weeks I would go straight back to them.

Now the ball is rolling, let's hope they can get you on appropriate medication to get them under better control. I doubt that metformin alone will have much impact on those kinds of levels, and probably no effect if you are, in fact, a slow-onset Type 1.

Ah ok that must be what I went on yesterday all about diet etc.

The nurse has set the ball in motion for me to have my eyes and feet checked and she took a pee sample yesterday to check my kidneys. She said to come back in 2 months for a blood test but if my levels don't change after half that on metformin I'll get the rest done earlier.

On the subject of tests, I was about 11 midday today then did some work on my allotment - nothing strenuous just putting some things in the car and did another test and I was on 5 and felt really shaky until I ate something.

Starting to worry now as I'm currently at someone's 40th birthday party and spoke to someone with type 2 who said her blood averages around 7 and was shocked that mine is rarely below 12.

So with the exception of the nurse who reckoned I would've popped my clogs by now everyone else seems to feel my levels are too high for type 2.

 

[Amigo]

I wouldn't be delaying too long in your position Tom because although I'm no expert, as a fairly newly diagnosed Type 2, your diabetes profile sounds different to mine. If the combination of metformin and diet doesn't impact on those levels, bang on the GP's door and insist on further exploration.

I won't recount my experiences with the NHS because it could turn into a novel. My GP told me I'd been borderline diabetic 4 years ago but I was never re-checked! Unfortunately cancer intervened and even though it's been diabetes that's been causing my main health issues, including infections, it wasn't diagnosed. Even when I was in hospital under the care of the....wait for it....Consultant Endocrinologist! You couldn't make it up 😱

 

[Ralph-YK]

DESMOND - Diabetes Education and Self Management for Ongoing and Newly Diagnosed.
When I did it they talked about why insulin isn't working for us, among other things. Rusty locks & insulin being the key to unlock the cells so they can use sugar.

I've found both remembering things and actually saying them at appointments a problems. Writing things down can help. Well, it's 1 of my coping mechanisms.

 

[Robin]

Hi Tom, I'm another Type 1 late developer here ( aged 50). It took me 6 months to get correctly diagnosed and on to insulin. My GP assumed I was type2 because of my age, but had the good sense to realise 'you might be a weird type because you're thin' ( I had lost two stone in two months, and I wasn't overweight to start with) and referred me to the hospital. She put me on Metformin and Gliclazide in the meantime, and I adopted a low carb diet. And I managed to reduce my HbA1c ( that's the three monthly average glucose test)from 15 to about 9. When I got to the hospital, they did an Anti-GAD antibody test, which proved it was an autoimmune type. They originally called it LADA, but then the hospital dropped the term, and they then just referred to it as Auto Immune type. (they were also falling over backwards and getting their knickers in a twist trying not to refer to anyone as 'a type 1' or 'a type 2' in case the patients felt labelled, but that's another story). so your GP and/or hospital may not use that term, or indeed have heard of it. The hospital told me they were amazed I was still walking round!

So keep pushing for the right tests, and a referral to a consultant at the hospital.

BTW, I Found I didn't get any of the dreaded side effects from Metfartin, which I suspect was due to being on a very low carb diet. but nor did it do anything for my glucose levels! the Gliclazide helped a bit, but it just flogs your pancreas to death making it churn out whatever insulin it's got left all the time.

 

[DaveB]

Hi. Yes, it sounds like you are probably a T1. I was also mis-diagnosed but still listed a T2. My diabetes GP didn't notice I was thin (despite weighing me) and told me to carry on losing wieght! He prescribed Metformin which made no difference (or course) and I had to suggest to him to prescribe Gliclazide which helped for a while. My later diabetes GP several years later refused to accept I might be T1 and refused me insulin until the following year when my blood sugar was rocketing despite low-carbing. Ignorance amongst HCPs regaring late onset T1 is very worrying but at least the new NICE guidelines recognise that being thin at diagnosis is a hint. You will probably need to go onto insulin with perhaps some Gliclazide or whatever for a while. Insulin was a great relief for me and not a problem; I wouldn't go back.

 

[heasandford]

I am eternally grateful to my doctor, who calmly sent me to the hospital telling them I had high ketones (even though I didn't) in order to get them to react the way he wanted. (I did have a BG of 28 though!) I was 49 and distinctly underweight having lost nearly 2 stone over about 5 months. The 'hospital at home' staff eventually passed me on to a wonderful consultant - I saw one of his doctors first who recommended metformin - response from consultant - "look at the girl (!) get her on insulin now!"

Sadly he left and I have had various good and bad versions - hold out for a specialist consultant, GPs just don't know enough. I love my current consultant at the Bournemouth Pump Clinic.

Best of luck, and keep coming on here, there's loads of knowledge and support!

 

[AlisonM]

I have LADA Tom and was diagnosed at the age of 52 after being found collapsed at home, I'd been ill for around 7 weeks at that point and just assumed I had a bug as there are no other diabetics in my family. I'm a classic T2 I'm fat and over 40, so that was they assumed I was. However, the meds didn't work for long, my numbers would come down briefly but then soar again and I'd be given a new pill to go through the same routine. I had to nag and nag and nag for 6 months to get the GAD and c-pep tests done and imagine everyone's amazement when they showed I had slow onset T1 instead.

I suggest that if you aren't seeing much improvement in 4 weeks, or your numbers are all over the place you should take yourself back to the doctor and ask that they retest you to establish which form of diabetes you actually have. Getting the right treatment is essential and the sooner the better.

 

[Jooles]

Confused Diagnosis

I was diagnosed by my GP with type 2 in September 2011 after having classic symptoms of urinating very often, extreme thirst, etc. I was prescribed Metformin which seemed to do the trick as my sugars went from 20 to around 10-11 fairly quickly. My GP advised at the time that I was quite young to have type 2 (I was 38 at the time) but I never thought anymore about it. I did what every other newly diagnosed person does and did some research into my condition, having not known anyone else with Diabetes.

In January 2015 I suddenly became quite unwell and went to my out of hours emergency doctor who carried out a blood test and then promptly advised that I had to be admitted immediately as I had a suspected blood clot! After a day in hospital I was told that I actually was suffering from DKA and was quite seriously ill. The specialist at the hospital then advised that I had slow onset type 1. I spent a week in hospital recovering and have received the best care from the Diabetes team at my local hospital. I cannot fault them at all.

My biggest problem is that my GP hadn't thought to investigate further when I was diagnosed as type 2, given the fact that they made a big deal of telling me that I was very young to have type 2 in the first place but that it was probably down to my weight (I am the average size for a woman in the UK!).

I think GPs need more education in diagnosing Diabetes and not 'put you in a one size fits all' category. If the GP is in any doubt or you don't fit into the normal stereotype they should be referring you for more tests to be sure.

Tomcat I definitely think you are type 1 and would demand a second opinion and further tests immediately. I think you are at risk of DKA and would not wish it on my worst enemy. Good luck, I hope you get the answers you need and get treatment asap.

 

[Copepod]

Welcome to the forum, Jooles. Do introduce yourself in Newbies section, if you like.

 

[tomcamish]

Hi all,

It appears the NHS are still doing abismally to figure out what's going on with me!

As i said on my initial post on this thread, I saw a nurse and was prescribed Metformin which i've been taking for just over a month now.

A couple of weeks ago I went to Turkey for 11 days and came back to 2 letters.

Letter 1 - from my Doctor's surgery stating that they had tried to contact me via phone and could i get back to them - worrying slightly I called them as soon as possible only to be told there was not record as to why they had contacted me in the first place and that it was "probably" nothing to worry about.

However, a couple of weeks after I was put on Metformin I called them to chase my referral to the tests I mention in my original post, and was told it was "in progress", but that they needed me to book a doctors appointment so they could discuss medication - when I pointed out i had been on Metformin for 2 weeks the receptionist said "oh they must have forgotten to log it" - what else have they forgotten?

So, onto letter 2 - a letter of invitation from the Dietitian at the diabetes clinic at the Norfolk and Norwich University Hospital for a 1 to 1 session about diets and nutrition. Odd considering I have already attended the group session on the same subject.

I called the number on the letter and was told it's different to the group session but that the next appointment isnt until 19th November!

I then called my doctors surgery and asked why I had been referred for more dietry advice, and asked what was happening about my eye, foot and kidney test. I was told i "should" receive another letter "sometime soon". Note that this is now 4 weeks since the referral was put through.

My impatience kicked in so I called the Diabetes Clinic directly, and guess what? They have not received a referral request from my surgery, that my file on the system shows I'm still logged as being under my surgery's care, and that the only thing they have seen is a referral for dietry advice, which doesn't mention diabetes and could, for all they can see, be due to high body weight or cholesterol etc (neither of which is relevant in my case as I'm no longer overweight and my cholesterol is fine).

At this point as you can probably imagine I was pretty peeved. I phoned my surgery again and requested a print-out of all of my notes for the last few months, which I am currently using as ammo for a well-worded letter of complaint to the NHS. I also requested a doctors appointment so I could get a second opinion and get the referral sorted, as the clinic at the N&N had said they can't do a referral from their end. Next doc's appointment at my surgery is 30th September. Great. Another nearly 3 weeks of waiting, knowing nothing and by that time, having run out of Metformin.

I'm not sure how the doctors across the country work but in Norfolk (or at least Norwich and the surrounding areas) each surgery has a "catchment area" and if you're outside of a certain surgery's area, you can't register there. Luckily, I live in the area of 2 surgerys, so I have now changed my doctors surgery, with the aim of getting my second opinion and successful referral, and have managed to get a doctors appointment for 24th september which is the same day I run out of Metformin.

So to summarise, it took them 2 months to give me any treatment, and has taken them another month to send me to talk about food again. In the meantime I still have not had my eyes or feet checked, still don't know if i'm type 1 or 2, and still don't know if Metformin is what i should be on!

Is it just me or is the NHS' response to diabetes a bit, shall we say, half-arsed? It certainly lacks the urgency one would hope from a desease they have detailed on my medical notes as "acute"!

Hopefully in 2 weeks i'll be able to put a more cheerful update on here!

 

[Ralph-YK]

It's not just diabetes. I've also had problems with hospitals and dentists. The dentist failed to do a referral (there's a whole story about that) for a tooth extraction. I've had a gum infection which was delaying some other treatment at the hospital. They were waiting on my tooth being done, which was delayed because if the dentist.
I've been dealing with 5 hospitals. Various departments & sub departments, a number based outside the hospitals.
Under funded, overstretched and I wonder if it's collapsing.

 

[TheClockworkDodo]

Tom - I'm really sorry to hear about your son, and about how badly you have been treated by the NHS.

I agree with everyone else, that you should make a big fuss about getting tests done sooner rather than later, as your levels are far too high and don't sound at all like type 2. As Northerner says, you need to have GAD antibodies and C-peptide tests done to check whether you have type 1, as well as standard tests for eyes etc.

I'm another person who was diagnosed with type 1 as an adult (age 44), with no previous family history. I'm lucky in that I got fantastic care from the NHS when I was diagnosed - but that might be because I was rushed to hospital with DKA, underweight, and with ridiculously high antibodies, so they could tell there was something serious going on.

But as Ralph says, it's not just diabetes - I have another illness which has had pretty much no treatment at all for the last 24 years, even though the effect of it on my day-to-day life is considerably more serious than that of my diabetes.

I think the luck of the draw which doctor/nurse/consultant you happen to see does make a difference, so it's worth persevering until you get someone who does something. I hope the new surgery sorts things out for you quickly.