Questions about my diabetes care

Hi everyone, new here, but I have some questions about my ongoing Type 2 diabetes care.
I had a heart attack at the end of July. Up until that day, I had been fit and healthy with none of the recognised signs of being diabetic whatsoever.
The day of the heart attack, in hospital, they asked me when I had been diagnosed as diabetic. I told them I never had been or even thought I was. To which they replied, you must be diabetic, you have a blood sugar level of 20.1 and put me on an insulin driver and tested me hourly for four days. Over the next few days, this did reduce this reading to an average of 13. At which point, having seen a diabetic consultant person, I was given a blood test kit and asked to test my blood sugar every evening before going to bed and every morning when I woke up. I was given tablets to take and told I'd be invited on a diabetes course.
This appointment came through and I duly attended with all the readings I'd been taking in the preceding month or so, which had gone down to an average of 6 to 7, higher in mornings than at night, but quite stable.
The lady running the course was very good at telling us all what we should and could eat and do to help the diabetes (and of course, what not to do!) but wasn't interested in my readings at all.
There has never been a follow up call from anyone on the online NHS Healthy living site I joined and recorded all my readings, goals and progress. There is no diabetes nurse/consultant at our doctors surgery. I continue taking the readings night and morning, still regularly between 6 and 7. I continue taking the pills and eat as healthily as I can (my wife is awaiting a gallbladder removal, so for her sake we've been on a healthy low/nil fat diet since April) and exercise as much as my heart weakness allows.
I don't want to be taking pills for the rest of my life, but now find I am developing some of the regularly mentioned diabetes symptoms, like weeing a lot more, feeling weak, shaky and dizzy when I don't eat regularly, things I never experienced before.
What I want to know is, once on this 'program' does anyone ever get follow ups, consultations with any one. No you feel neglected?
My cardiac care team are in regular contact with me and constantly helping me with emotions, medications, changes to diet and medications which help, but no one ever contacts me from the diabetes team.
Sorry if this is a bit long and involved, but just looking for some ideas and hear how others are being treated.
Thank you.

EllieM said:

Hi @Electricgeoff and welcome to the DCUK forums.

I'm T1 so can't really answer the care question but do have a couple of questions/comments that may be relevant.

1) Did you ever get an hba1c test? Blood sugars tend to go up under stress so I wouldn't necessarily reckon that your readings of 20 reflect your normal daily readings pre heart attack. My understanding is that you definitely should get follow ups in terms of hba1cs, eye and foot tests, but not sure how often the NHS do them for new T2s.

2) What medications are you taking for the diabetes? Are you also on meds for the heart attack?

3) Have you been to see your GP with any of your diabetic questions.

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Hi EllieM
Thank you for replying so quickly with your advice.
1) Yes, it was an HBa1C test at the hospital, presumably when they took bloods as I went straight from the ambulance into theatre. An awful lot was going on at the time after being blue lighted from one hospital to Lincoln specialist centre and a lot was a blur.
I was first asked the question about when I had been diagnosed diabetic after the operation and I was moved from recovery to a ward. I honestly can't remember what the HBa1C reading was, but the cardiac care team person has seen the figures and said I definitely had high reading, but a lot of that could have been the stress I was under at the time. A subsequent test done at the doctors more recently was never advised of results. Again the Cardiac team person said that I was showing promising reductions and this is proved by the finger prick tests I'm doing daily.
2) I'm on Sukkarto SR (a form of Metformin as I couldn't tolerate the straight Metformin) and Gliclazide. I'm on Aspirin, Bisoprolol, Ezetimibe, Isosorbide, Losartan, Prasugrel and Lansoprazole, but I think this last one is to ensure I don't get stomach ulcers from all the other meds! Until the heart attack I didn't even take headache pills, so all this lot has been a shock, not just to me, but to my system!
3)When I see my GP about my medications (all) he is sympathetic to all the side effects I've been suffering and has reacted to every change in medication that the Cardiac team has suggested, but these mainly have been the heart medication. One doctor, who phoned to increase the statin I was on, (which the cardiac team have since taken me off) said on enquiry about my diabetes, it's nothing to do with me, your under the Cardiac team. Thankfully I don't get to see him since.

However, I would just like to say that, having posted this last night, I got a call today from the Diabetes team! A telephone appointment has been arranged with a specialist on the Cardio Diabetes team in a week or so. Coincidence?!
I have also had an eye test, which, as I'm under a very good optician anyway, confirmed there was nothing wrong with my eyes.
I haven't yet had a foot test, which I understand is something which should happen. However, until recently, when the statins were stopped, the soles of my feet were so tender (like someone had been beating them with a baseball bat, I doubt I'd have felt anything other than pain.

I wish you well with your control of your T1 diabetes. I understand they are quite different and I'm grateful you took the time to reply and offer helpful advice. I'll see what the specialist has to say.

Rachox said:

If I was in your position I would book an appt. with your GP, acknowledging the fact that they are not a diabetes specialist. Become your own specialist!
Have a read of the NICE guidelines for type 2 diabetes care. Most notably you need to have appts for a foot check, a diabetic eye screening and an HbA1c blood test. HbA1c is the test to diagnose diabetes, 2 tests to confirm diagnosis and thereafter three monthly til controlled and stable.
Here’s a link for you:

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Good evening Rachox, I had to remove the link you sent because the system wouldn't let me reply with that in place, but otherwise, here's my reply.

Thank you for replying so quickly with advice. I've tried that one!

Following the most recent blood tests ordered by the Cardiac team, I asked for an appointment to speak to the doctor I consider has the most empathy with my situation and is always prepared to listen. The practice said I couldn't make an appointment until the results of the blood test were in and to wait until I heard something. However, the nurse that took the blood said, ignore that, I'll tell him and don't be surprised if he phones you anything up to 2100 at night. That was exactly two weeks ago and I've heard nothing!
However, the Cardiac team made an unannounced call to rearrange an appointment and were surprised I'd not been advised of the test results, which showed I shouldn't really be on the statins, so stop them. She said she'd chase the doctor for an appointment and would get me another appointment with the Lipidology team and get me onto an exercise course to help me build my strength back up. I'm still waiting, but do know she'll be phoning again next Thursday and I have faith in her.

I've recently had the eye test, but that only confirmed what my very good optician had already told me, there were no signs of diabetes in the eyes. I have annual checks/photographs and he's seen no deterioration in these over the past 10 years.

As I said to Ellie, I haven't had the foot test, but with the pains I was suffering in my feet until the statins stopped, I doubt I'd have felt anything.

I read just about everything which is on the Diabetes UK website and the NHS diabetes website, all the diets and ways to help oneself. It's mind boggling, but I've tried to take everything onboard and follow all the advice. It's not always easy, but I'm trying.

Thank you for the advice and I do hope that I will finally get caught up into the system and get off these tablets, like JoKelsbeek.

As I said to Ellie, it may be coincidence, but since I posted this last evening, I had a phone call today from the diabetes team to arrange a telephone appointment with a specialist in the next week or so. Maybe I'm making some progress after all and I can't wait to hear what he has to say about my current readings that I take and the latest HBa1C results, which I still don't know what the reading is.

Thank you for taking the time to reply to me. Like my recovery, maybe all this takes much longer than I've been expecting. I've never been one for going to doctors, or even taking headache pills until this happened, I was always fit and healthy, so unused to the ways the NHS and these specialists work.

JoKalsbeek said:

Diabetes care varies wildly, but we do often hear on here about people not getting the right help, or getting downright wrong advice. (I know I got very, very bad advice from people who were supposed to be specialists. Some of it actually dangerous due to contraindications. So then, becoming your own specialist is indeed a pretty good idea!). So while it goes right sometimes, sometimes it also goes wrong.

Also, you said you've been on a low to no fat diet with your wife. And suddenly your symptoms change. This might be because you're on the same diet. Her issues are different from yours, but you're treating them the same way. You don't put a cast on a stomach ulcer, for instance... Different problems, different treatments. If your heart issues were caused by at that time, untreated diabetes, (IF!!!) the damage was mainly done due to high blood sugars damaging the organ and arteries. That's a carbohydrate problem, not a fat problem. Thing is, there are three macro nutrients: fats, protein an carbohydrates. Cut out one, up the others to keep going or risk getting malnourished. So if you've been low fat, chances are you've upped the carbs, which isn't ideal for a diabetic. For us it's usually low carb, high (healthy) fats. Which is rather inconvenient if you're not on the same page, but in our house, that just means I cook the same thing, except my husband gets potatoes and I get an extra helping of salmon. Same meat, same veg. Not entirely different meals, we just each have a portion of something the other doesn't. Something to look into, maybe...? The Diabetes Code by Dr. Jason Fung might be useful.

In any case... Yeah... I've been my own "doctor" for most of the 8 years I've been diabetic. My GP just orders the tests for me when I request them, we don't even go over the results anymore. (I know more about T2 than she does, and she's admitted as much; I'm the only one in the practice who's not seem a steady rise in HbA1c... You'd think she'd ask more questions about it, but ah well). You're not alone. The NHS is overtaxed and understaffed, a lot of information is out-dated... It's not that they don't want to help, they're just drowning themselves, more often than not.

Anyway, good luck!
Jo

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Good evening Jo

thank you for your informative and uplifting reply.

You are actually where I want to get to.

I've always maintained I wasn't and aren't diabetic, the high readings that my medication is based on was (as the Cardiac specialist has agreed with me) caused by the stress I was under. Only a few weeks before the heart attack and a month long trip to Australia, but my wife and I had had a medical during which a blood sugar test was done and although slightly raised (but we had only just had our breakfasts) was nothing at all to worry about.

Although you doubt that our healthy diet isn't compatible for us both (I have heart attack, she is waiting for gall bladder operation), the diets given out by the Diabetes websites and at the course I was sent on, is exactly was does us both good. I definitely don't increase my carb. intake to compensate for low fats. We eat lots of oily fish, very little dairy (it upsets both our digestive systems), low carbs, lots of vegetable, fruits, nuts and seeds, rarely red meats.

We really enjoy our food and that, more than anything, is our biggest problem, we eat too much
of all the things we're allowed to eat even though it is allowed on the diabetes diets. We are both losing weight as this is a further step towards coming off the tablets for me. I'm nearly lost 10% of my body weight since july, and although that wasn't the plan, 20% since we began eating healthy following my wife's diagnosis.

I just need some back ups from the specialists I thought would be there to help and monitor me, like the Cardiac team have been.

But you are the inspiration I need, to get off the diabetic medications in particular and manage my blood sugars with diet alone. It might take time, something I've never been good at, waiting for anything. I want everything now, or yesterday, if possible. This has been a big wake up call to me and the timescales being quoted to return to full fitness (five to six MONTHS) is just not how I would normally work, so I'm having to readjust my brain to take my time and let things happen, but SLOWLY.

Thank you once again for replying and telling me your story.

At least today, and it may be a coincidence, but the DIABETES team did phone me to make a telephone appointment with a specialist in a week or so. I can't wait to hear what they have to say!

Rachox said:

I’m glad things appear to be moving forward for you finally.

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Hi Rachox,

me too.

I've quickly scanned all the useful information and links you've sent, some of which I read in other places, other stuff which is new to me, so will take time to dissimulate, but I thank you for supply some really useful advice.

I'm really looking forward to this telephone chat with this specialist as no one, to date, has been interested in any of the readings I've been asked to keep a note of. I thought they'd be of interest to someone along the line, but so far, the only person who has seemed interested is myself, keeping a note, watching self made graphs on the computer go up and down and understanding why some days the readings are either up or down.

I'll definitely be spend many more nights up late reading.

Thank you very much for your help and advice.

Lupf said:

Hi @Electricgeoff welcome to the forum. you are doing the right things
For T2 diabetes you need to do two things; (i) take charge yourself and measure how food is affecting your body, (ii) keep asking your surgery for appointments, tests that you require,... You are doing both, so keep at it. It is not unheard of that you will be given medication, and told come back in a year, so you need to be persistent. In England and Wales you should also be able to register online with the NHS, so that you have all your medical data at your finger tips.
I don't want to go into specifics as you also have had a heart attack, and we cannot give medical advice, but it is worth pointing out that while there is broadly agreement how to treat CVD, for diabetes this is not the case. Thus depending who is on your diabetes team you will get different advice and it is worth informing yourself.

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Good evening Lupf:

Thank you for your encouraging reply.
I thought I was alone in all this and was having to manage things myself, so to know that's how things work, I'm encouraged to find that this might be nothing unusual.
I'm not great with techy stuff and can't even order my drugs online. I send/.take a letter to the surgery, which isn't too far away.
My wife, who had bowel cancer a few years ago suggested finding one of these forums as she found great help as she went through the operation, chemo and subsequent full/clear recovery. She signed me up, I just have to open the e-mails and there are your helpful and informative replies, so I'm really grateful.
I'm certainly getting far more help and encouragement from the cardiac team, they've been very good.
Thank you once again, I'll look into getting registered.

Introverted_And_Proud said:

Hi there, @Electricgeoff . I'm glad to see the diabetes team finally got in touch with you. But goodness me! I'm quite surprised at how long it took them to do so.

I'm Type 1, but my paternal granddad was Type 2 for ten years of his life. He used to attend consultation appointments at our local diabetes clinic as frequently as I did (every three to six months), and much like myself, he was required to get specific blood tests done prior (including the Hba1c test), along with having his blood pressure checked, supplying the clinic with a urine sample and sometimes getting his feet checked during said appointments. As far as I'm aware, he never had to chase any of these appointments up and was automatically summoned back to the clinic by our local diabetes team when needed, so it is shocking to me that the diabetes specialists have taken so long to get in touch with you. Though, it does sound like you have handled your treatment quite well so far, which is a relief.

Reiterating what others in this thread have already said, I would also make sure to keep asking for appointments and chasing them up when necessary. While the treatment for Type 2s and Type 1s varies, both because of type and each individual patient, a diabetes specialist should still be checking in with you every now and again to monitor your progress, especially in case your treatment needs to be changed or you need further advice for your diabetes management. Although, if you do have any questions or concerns surrounding your diabetes, you should still be able to contact your local diabetes team without needing an appointment, either by phone or email. I've done this with my local diabetes clinic a few times when I've needed advice or had a query and it was quite helpful.

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Good evening Introverted_and_Proud, thank you for making contact.
I'm possibly as old as your granddad, but proud and pleased to have got this far in life with no health worries until now. I'm sorry to hear you have Type 1, which, through reading, sounds far worse than I'm having to put up with.
I was very angry that it had happened to me in the beginning, although perhaps I shouldn't have been surprised as both my grandfathers had heart trouble as did my father, but I guess we all think it's not going to happen to us!? Anyway, I've got all my three children to go get tested both for the diabetes and heart health, especially because of the genetic defect in one of my heart arteries, which has precluded a further stent insertion.
I guess because we live in a pretty rural area of the East Midlands, the fact our practice doesn't have a diabetic practitioner isn't particularly surprising. As was the fact that no ambulance was available when the heart attack struck (about 0400 on a Sunday morning) and my wife had to drive me 12 miles to our nearest hospital. Just a few minutes into arriving at their A&E, it was amazing how quickly an ambulance was made available to drive me to the regional specialist heart centre, some 40 miles away. During which trip I nearly died, so I feel terribly grateful to the NHS (we all know it's in a dreadful state, no matter where we live) and the staff of both hospitals and the ambulance crew that got me there in time. Maybe a diagnosis and treatment of diabetes (however distant and inconsistent) is a small price to pay. At least we have found each other finally!
I live in hope of becoming one of those who eventually goes into remission and I can stop taking the pills.
As for the heart, as long as I do as I'm told and don't have any angina attacks, they see no reason why I can't go on and surpass my Dad's age at death, he survived until he was 93! Surviving cancer in his 40's, a heart attack in his late 70's, a broken hip in his early 80's and losing mother five years later.
So, once again thanks for your support.