The beginning of my diabetes journey

[Minniehaha]

Hi everyone, another newbie with all the confusion hopes and fears I guess we all have. I'm a retired widow in my mid sixty's and live alone. I have been feeling exhausted for quite sometime and had put it down to my underactive thyroid (exhaustion never left me even when thyroid function tests said I was ok 5 years ago). It had got worse recently and I'd had the thirst and peeing issues and to be honest I knew what it was... Go back a seven years to when my husband was diagnosed with type 2 after a routine annual blood test, we got the GP to agree to trying to manage it with diet and exercise and I set about helping him. Within 6 months his blood sugar was in th normal range. Sadly his sudden rise in blood sugar should have sounded alarm bells and triggered a referral and further investigations as per NHS England guidelines but it didn't so his pancreatic cancer went undetected until 2017 when he died, 7 months after diagnosis. So, when I recognised the signs in me, I started eating better and the thirst and peeing improved but the exhaustion got worse and I noticed occasional blurry vision and realised I couldn't sort this out myself. I logged on to our surgery e-consult last Tuesday when I couldn't sleep and answered the questions. It told me to go immediately to A&E!!! Next morning I phoned the surgery, got a GP call back, she arranged a full set of blood tests within the hour (fluke that nurse had a cancellation apparently). They did a pin prick test and got a reading of 20.7 the nurses face dropped and she rushed off to see the GP. The following day the bloods came back at 111 which is over twice the norm apparently. I am now juggling 40mg of Gliclazide twice a day, Metformin once per day (due to rise to 3 per day if I can tollerate it) statins at night, pin pricks and blood pressure readings three times a day before meals and awaiting an urgent referral to the Community Diabetes Team in the next two weeks hopefully. To say that my emotions and body are in shock is an understatement. I see lots of people saying they are overwhelmed and that about sums it up. I've been tearful and in shock for a week and find that the oly thing that helps me feel calm is walking my dog. I'm lucky enough to live somewhere with beautful forests and a coast line, I honestly don't know how I would have coped this last week without the dog and the walks. Pin prick sugars have come down massively and the weight is dropping off with me managing my GI. I'm not missing the food (I'm a big girl) and my appetite has decreased so I struggled to eat supper this evening and left half then panicked and got frightened about having a hypo so ate a spoonful of hummus. I continually have to check what has to be taken and done when, I haven't sorted out how to take the paraphinalia about with me and, worst of all I can't shake off the shame I feel at allowing myself to get into this state. Well. that's about it for now. A wonderful forum got me through my husbands illness and death and who knows, this one might get me through my current situation. Good luck to you all, Minnie

 

[Windy]

Hi @Minniehaha, welcome to the forum. Sorry to hear about your husband, your recent diagnosis, and how it's overwhelming. Please don't be ashamed, it's genetic as well as whatever we've done ourselves (I'm a comfort eater, and that's done bad things to my weight) and there's no point in beating yourself up about it. Be proud that you're doing something about your blood glucose levels now, and took the step to contact your doctor about it.
I can't give you any advice about gliclazide, but I believe you need to eat enough carbs so that your blood glucose doesn't drop. Hopefully either the community diabetes team or someone on the forum knows more about that and can confirm.
We're all here if you need an ear to listen.
Be kind to yourself and don't beat yourself up about it, Sarah
PS please give belly rubs to the dog from me!

 

[rebrascora]

Hi Minnie and welcome.

So very sorry to hear about the loss of your husband to pancreatic cancer. We have a few members here who have been lucky enough to be winning that battle. It is so sad that your husband is not one of them.
Obviously your own diagnosis will come as a shock as it does to all of us, but on top of your late husband's experience it must have hit you a lot harder. I am pleased that you are finding some solace in walking your dog. Animals are a great comfort in such circumstances and the walking is good for both diabetes and mental emotional health, especially if you are getting out into beautiful countryside.

My HbA1c was 112 at diagnosis and I too was started on Metformin and Gliclazide and I went through a range of emotions like yourself including guilt and embarrassment and anxiety but thankfully also determination that I was going to change things. Like yourself I tried to make changes prior to contacting the doctor but after a couple of weeks I knew I needed professional help. After that it was a bit of a whirlwind but unfortunately remission wasn't for me as it was discovered I was actually Type 1, so I am now on insulin, but I have been given lots of support education and advice, largely from this forum but also from my health care professionals and my sister and friends. I am now doing really well. I am fitter and healthier and slimmer and feel younger than I have for years and there have been other health benefits in changing my diet too like I no longer suffer debilitating migraines and less joint pain, so I actually consider myself much healthier now than I was at diagnosis and believe that the diabetes may have actually improved and extended my life rather than limiting it. I hope you too can find some positives in the situation once you have come to terms with it and got your head around the basics.
In the mean time, be kind to yourself and focus on the things you can do to improve your situation now rather than what has gone before.... and make any changes to your diet slow and steady as that is kinder to your body which has some quite serious adjusting to do to come down from those high numbers, so slow and steady is safest.

 

[Minniehaha]

Hi @Minniehaha, welcome to the forum. Sorry to hear about your husband, your recent diagnosis, and how it's overwhelming. Please don't be ashamed, it's genetic as well as whatever we've done ourselves (I'm a comfort eater, and that's done bad things to my weight) and there's no point in beating yourself up about it. Be proud that you're doing something about your blood glucose levels now, and took the step to contact your doctor about it.
I can't give you any advice about gliclazide, but I believe you need to eat enough carbs so that your blood glucose doesn't drop. Hopefully either the community diabetes team or someone on the forum knows more about that and can confirm.
We're all here if you need an ear to listen.
Be kind to yourself and don't beat yourself up about it, Sarah
PS please give belly rubs to the dog from me!

Thanks Windy, you are very kind. Sadly the dog has come out in sympathy has gone off her food and is throwing up! Currently in her expensive, "spoit only dog" luxury bed, like a dying duck in a thunder storm. She's a Springer/Lab cross rescue and has all sorts of tummy troubles, special diet et al, I am bracing myself for another trip to the vet but hoping she will be better tomorrow. Hoping we all will, M

 

[Minniehaha]

Hi Minnie and welcome.

So very sorry to hear about the loss of your husband to pancreatic cancer. We have a few members here who have been lucky enough to be winning that battle. It is so sad that your husband is not one of them.
Obviously your own diagnosis will come as a shock as it does to all of us, but on top of your late husband's experience it must have hit you a lot harder. I am pleased that you are finding some solace in walking your dog. Animals are a great comfort in such circumstances and the walking is good for both diabetes and mental emotional health, especially if you are getting out into beautiful countryside.

My HbA1c was 112 at diagnosis and I too was started on Metformin and Gliclazide and I went through a range of emotions like yourself including guilt and embarrassment and anxiety but thankfully also determination that I was going to change things. Like yourself I tried to make changes prior to contacting the doctor but after a couple of weeks I knew I needed professional help. After that it was a bit of a whirlwind but unfortunately remission wasn't for me as it was discovered I was actually Type 1, so I am now on insulin, but I have been given lots of support education and advice, largely from this forum but also from my health care professionals and my sister and friends. I am now doing really well. I am fitter and healthier and slimmer and feel younger than I have for years and there have been other health benefits in changing my diet too like I no longer suffer debilitating migraines and less joint pain, so I actually consider myself much healthier now than I was at diagnosis and believe that the diabetes may have actually improved and extended my life rather than limiting it. I hope you too can find some positives in the situation once you have come to terms with it and got your head around the basics.
In the mean time, be kind to yourself and focus on the things you can do to improve your situation now rather than what has gone before.... and make any changes to your diet slow and steady as that is kinder to your body which has some quite serious adjusting to do to come down from those high numbers, so slow and steady is safest.

Thank you so much Rebrascora for this very positive response, I'm so pleased you have made such wonderful progress, it's heartening to hear as so far the health professionals have terrified me, not because they are not kind and helpful but because they are clearly very worried and have not done a great job at hiding it! I'm in a holding pattern now until I get contact from the Community Diabetes Team. My GP is has asked for an urgent referral and tells me she will call me at the end of next week and them if they haven't responded. It means a great deal that you have had a similar number to me as I was busy drawing up my will and writing down passwords last Friday. I do have a massive supporter and source of information, my daughter who is a hospital doctor (not diabetes related) and who explained so much and gave wonderful, kind and practical advice when my husband was dying. I was too shocked, ashamed and emotionally raw to tell anyone until telling her on Saturday (still haven't told anyone else) but she was loving, encouraging and kind and suggested I look at and join Diabetes UK, I'm glad she did. Thanks again for the positive reply it has helped, Minnie x

 

[rebrascora]

I am pleased that my words have helped a little. It is great that you have a compassionate and caring daughter to support you and of course your dog to motivate you to walk and distract you.

I think it is possible that you may end up following the same path as myself. You mention that you have lost weight.... was that significant and has it happened perhaps a little easier than you expected?

 

[rebrascora]

Oh no! So sorry to read that your dog is poorly! Not what you need right now.... another worry! Hope you are both feeling better tomorrow.

 

[Minniehaha]

I am pleased that my words have helped a little. It is great that you have a compassionate and caring daughter to support you and of course your dog to motivate you to walk and distract you.

I think it is possible that you may end up following the same path as myself. You mention that you have lost weight.... was that significant and has it happened perhaps a little easier than you expected?

I lost about a stone during lockdown without trying but difficult to say if its connected as I was also walking more, cooking from scratch, not having calorie laden coffee and cakes and not going in shops so was not being tempted by treats and offers. I went down one dress size and have been consciously trying to keep it off since. One stone of many I may add…. Am I deluding myself? Wouldn’t be the first time… M x

 

[Minniehaha]

Oh no! So sorry to read that your dog is poorly! Not what you need right now.... another worry! Hope you are both feeling better tomorrow.

Stops me navel gazing

 

[trophywench]

I realise you are realistic and think Madame/M'sieur Spoilt Only Dog is behaving like a Brat of That Ilk - but ...... some dogs are empathetic with their owners and detect things as diverse as hypoglycaemia or cancer, and as I understand it a lot of which has to do with the person's smell! Bearing in mind the multiple number of olfactory cells that dogs have in comparison to humans, smell is more important than sight to them.

Fascinating - but why not?

 

[Minniehaha]

I realise you are realistic and think Madame/M'sieur Spoilt Only Dog is behaving like a Brat of That Ilk - but ...... some dogs are empathetic with their owners and detect things as diverse as hypoglycaemia or cancer, and as I understand it a lot of which has to do with the person's smell! Bearing in mind the multiple number of olfactory cells that dogs have in comparison to humans, smell is more important than sight to them.

Fascinating - but why not?

Hi Trophywench, thanks for joining in, Spoilt only Dog is female and called Pippa. I’m sure they know when people are ill and this one can certainly smell cancer. In this case I strongly suspect she is suffering the effects of the wormer she had on Saturday evening… I don’t want to give them to her as she doesn’t eat for a week and gets really poorly but the vet tells me horror stories about lung worm.

 

[rebrascora]

She is gorgeous!

 

[everydayupsanddowns]

Welcome to the forum @Minniehaha

So sorry to read about your husband. Pancreatic cancer is a swine. I lost my wife to it in 2018.

Well what a gorgeous pup young Pippa is! Hope she is looking after you well, and helps you get through the turbulent emotions of your diagnosis.

Well done on the weight loss, and best of luck gradually reducing that pesky HbA1c. A slow and steady reduction with a staged change in eating habits can be much easier on the fine blood vessels than a sudden ‘all or nothing’ transformation in your diet, so don’t feel you have to avoid all carbs entirely. Cutting right back on the obvious sweet things, and then a gradual moderation in portion sizes of starchy carbs can be a more sustainable approach.

Good luck and let us know how you get on 🙂

 

[Leadinglights]

Hi Trophywench, thanks for joining in, Spoilt only Dog is female and called Pippa. I’m sure they know when people are ill and this one can certainly smell cancer. In this case I strongly suspect she is suffering the effects of the wormer she had on Saturday evening… I don’t want to give them to her as she doesn’t eat for a week and gets really poorly but the vet tells me horror stories about lung worm.

My dog (sadly no more) ate a whole packet of worming tablets I had for the cats and I rang the vet in a panic. He said to make her sick and I said how do I do that. He said give her a spoonful of mustard or put a washing soda crystal on the back of her tongue. Both seemed harsh but tried the soda crystal and sure enough it worked with a minute. No lasting harm thank goodness.
Her piece de resistance was eating a whole box of liqueur chocolates, talk about a giddy dog.

 

[Mrs Mimoo]

My dog (sadly no more) ate a whole packet of worming tablets I had for the cats and I rang the vet in a panic. He said to make her sick and I said how do I do that. He said give her a spoonful of mustard or put a washing soda crystal on the back of her tongue. Both seemed harsh but tried the soda crystal and sure enough it worked with a minute. No lasting harm thank goodness.
Her piece de resistance was eating a whole box of liqueur chocolates, talk about a giddy dog.

My dog (now long gone) used to eat my mum's nivea cream and whole pats of butter. The results were horrible but the dog was ok.....

 

[Minniehaha]

My journey continues...I was refered, presumably by the Community Diabetes team for an urgent CT with contrast scan of the pancreas. I found out from a letter (unsigned) from the local area halth authority telling me to turn up at our district hospital the following week 9th Feb. This was before I hard anything from the urgent referal from my GP to the Community team, I got a letter from them telling me I had a telphone appointment on the 22nd Feb i.e. today. In the mantime my GP called me and was taken aback to hear that not only had I been referred for a scan but had had it as there had been no communication from the Community team to her. I pointed out that I knew why they were scanning (protocol in sudden onset diabetes), I knew because it didn't happen with my husband and his diabetes turned out to be pancreatic cancer, he missed the protocol by 6 months... She obviously understood that this was making me very anxious and she was very apologetic that no one had spoken to me about having the scan and no one was supporting me awaiting the results. Back to today...nice nurse phones and says they are very pleased with the data sheets I sent showing my 3 times a day finger prick bloods are all within the normal range and have been for the last two weeks. I dropped out 20mg of gliclazide on advice from my GP and dropped out the other 20mg a week later. Am now taking only 1gm of metformin twice per day. That's some reduction given a starting point of 20.7 The problem is that I still have not got my scan results and no one seems to know why or who is going to tell me. The nice Community team nurse is chasing with the consultant who ordered the scan, he says he hasn't got the results but will look tomorrow when he is at the district hospital and phone me. I pointed out I would be in the car, driving for half the day so I hope the results are good! So far I'm very unimpressed with the whole system, extremely anxious, not sleeping and have lost faith with the system. My fingers are sore, my tummy is in turmoil and I am reminded of the old saying "when the "effluent" hits the fan, you are on your own". That'll teach me for eating too much too often for too many years! Tomorrow is another day thank goodness!

 

[richardmillar11]

Hi Minnie what a journey you are on. You have done the right thing joining here where u can chat to others in the same position get information and share the experience.

You are not alone I was diagnosed back in October and since then I’ve experienced every emotion known to man on a daily basis. It is completely overwhelming and exhausting. I think the exhaustion is the worst and the mental turmoil of it all. Your situation is worse given what you have experienced with your husband and i sympathise with you.

On a positive note however let me tell you that my hba1c was 115on diagnosis. Last test 3 months later it’s down to 55 and that’s without any medication. I changed my diet drastically and the weight fell off not that I needed to loose it am now heading for under weight but as you have already been advised don’t be too strict like I was as the sudden reduction has left me seeing floaters but I think that will sort itself out in time. I was also sent for an ultra sound to check I suppose my pancreas but all internal organs which came back clear but it took me to ring the gp weeks later to get the result and when I rang he thought he had already given me the all clear ! Waiting for the result nearly put my head away it was a very Stressful time. My finger prick test like yours are more or less mostly in range so be encouraged that you should see a reduction in hba1c. Your not alone some days are just awful then others are not so bad but as time goes on it does get a bit easier.

Be encouraged it’s not easy but uncan get through this.

Richard

 

[Andy777]

That'll teach me for eating too much too often for too many years! Tomorrow is another day thank goodness!

it's wrong to assume that only fat people get diabetes. I got it aged 70 after becoming immobile. Please don't beat yourself up about it. you'll be fine.🙂

 

[Leadinglights]

it's wrong to assume that only fat people get diabetes. I got it aged 70 after becoming immobile. Please don't beat yourself up about it. you'll be fine.🙂

Absolutely right, I have just found out about a friend who is slim, never actually ate much, very active, has been diagnosed as Type 2.

 

[Pandy8]

Thinking of you today and hoping all well with scan results. Hope your journey ok too.