Newly diagnosed, feeling grim

[Bex72]

Hello,
I wasn't expecting this. Although, blurry vision, up at night for hours with unquenchable thirst, frequent peeing should have been clues, only started 3 days ago. I have a bmi of 23, I am active, 48yo with thyroid disease (Hashimotos) and severe migraine. My paternal grandmother had Type 1 with lots of problems. In the space of a few hours I have itchy lips and hands, sores in my mouth, upset digestive tract, cracking headache and nausea. I've been started on low dose metformin. My blood sugar ranges from 14 to 23, although more higher readings than lower. Trying to see GP tomorrow.

Any advice or tips would be welcome, I have a lot to learn and want to stop feeling so sick.

 

[Stevench47]

Hi,
Take a step back and breathe it's not the end of the world.

I'm in the same boat, family noticed I was not myself and brought a tester round to check. I had blood glucose reading of 31 and an ac1 of 120%. I ignored the symptoms of thirst, up 5 times a night peeing, carpal tunnel in fingers and blurred vision for 3 months.
I now have my own meter and by cutting out the sugar completely and going on v.low carb high protein diet and moderate daily exercise (2 half hour brisk walks a day)I have lost 15 kg in a week and my blood glucose is now down to 7.4 and still falling without meds.
Positive attitude is always the best start, remember the human body is an amazing machine.

Keep smiling and take it one day at a time

 

[DCUKMod]

Hello,
I wasn't expecting this. Although, blurry vision, up at night for hours with unquenchable thirst, frequent peeing should have been clues, only started 3 days ago. I have a bmi of 23, I am active, 48yo with thyroid disease (Hashimotos) and severe migraine. My paternal grandmother had Type 1 with lots of problems. In the space of a few hours I have itchy lips and hands, sores in my mouth, upset digestive tract, cracking headache and nausea. I've been started on low dose metformin. My blood sugar ranges from 14 to 23, although more higher readings than lower. Trying to see GP tomorrow.

Any advice or tips would be welcome, I have a lot to learn and want to stop feeling so sick.

Hi there Bex. What a blow.

If your symptoms (particularly the thirst and frequent peeing) only started a few days ago, please be vigilant. Type 2 diabetes usually creeps up on folks, with their symptoms, if they have any, building over a period, whereas Type 1 can come on more swiftly, andcan make the new T1 very u.

If your nausea continues, and you have high blood glucose, please do call NHS 111 or get yourself off to A&E - just in case you have T1 instead of T2.

I'm not posting this to alarm you but because I have concerns for you. Your description of yourself, with a trim figure, isn't typically T2. You have an existing auto-immune condition, high numbers and now your nausea are concerns.

It is possible to be a slight T2, but the rapid onset and nausea concern me.

Better safe than sorry.

Hopefully some others will comment soon, but I'll tag my colleagues, @Antje77 and @Jaylee so that they can maybe comment, and maybe offer some words of wisdom.

 

[EllieM]

If your nausea continues, and you have high blood glucose, please do call NHS 111 or get yourself off to A&E - just in case you have T1 instead of T2.

I second this. In fact I'd go further. Ring 111 and tell them what you've just told us. (Don't miss out the family history and the hashimotos). You are a prime candidate for T1 (though T2 is still possible) and you don't want to be one of those T1s who gets diagnosed via a descent into DKA (diabetic ketoacidosis, fatal unless treated with insulin in time).

 

[Bex72]

Hi,
Take a step back and breathe it's not the end of the world.

I'm in the same boat, family noticed I was not myself and brought a tester round to check. I had blood glucose reading of 31 and an ac1 of 120%. I ignored the symptoms of thirst, up 5 times a night peeing, carpal tunnel in fingers and blurred vision for 3 months.
I now have my own meter and by cutting out the sugar completely and going on v.low carb high protein diet and moderate daily exercise (2 half hour brisk walks a day)I have lost 15 kg in a week and my blood glucose is now down to 7.4 and still falling without meds.
Positive attitude is always the best start, remember the human body is an amazing machine.


Thanks Steve,
I always felt guilty for having migraines, I know that it's isn't my fault. I am a determined person and I know I will put my all into this. Frankly, I am still shocked. Thanks for your advice. You have done incredibly well and should be proud of what you have achieved. If I can get well with an improved diet that would be like striking cold. I'm worrying about unknowns and as you say, take each day at a time.
All the best

 

[Jaylee]

Hello,
I wasn't expecting this. Although, blurry vision, up at night for hours with unquenchable thirst, frequent peeing should have been clues, only started 3 days ago. I have a bmi of 23, I am active, 48yo with thyroid disease (Hashimotos) and severe migraine. My paternal grandmother had Type 1 with lots of problems. In the space of a few hours I have itchy lips and hands, sores in my mouth, upset digestive tract, cracking headache and nausea. I've been started on low dose metformin. My blood sugar ranges from 14 to 23, although more higher readings than lower. Trying to see GP tomorrow.

Any advice or tips would be welcome, I have a lot to learn and want to stop feeling so sick.

Hi @Bex72 ,

Welcome to the forum.

Firstly, I would also reiterate calling 111 if your BGs are high. & speaking to an advisor.
Do you also have a ketone meter?
https://www.nhs.uk/conditions/diabetic-ketoacidosis/

Keep a close eye on your BGs.

 

[Antje77]

In the space of a few hours I have itchy lips and hands, sores in my mouth, upset digestive tract, cracking headache and nausea.

I agree with the above posts. Those symptoms in the space of a few hours, combined with high blood glucose and a family history of T1 scream to get yourself to a hospital now and don't wait until the morning.

DKA is no joke, and tomorrow may be too late.

You might have something else going on, but why take the risk?

Please get yourself checked out! And let us know how you are too.

Good luck!

 

[Bex72]

Thanks for your comments.

Yesterday was a heck of a day! I hope you don't mind me running through events.

I knew there was a problem by 11am and following a call to 111 attended A&E. At this point I did not have nausea or headache. I mentioned the unquenchable thirst, urination and blurry vision which was getting worse rapidly. The thirst was put down to the heatwave. I saw the eye dept who tested my eyes and blood and gave me the news. Eye dept tried to pass me back to A&E to see medics. Instead I was sent home with letter for GP for Monday. I was not feeling particularly ill at this stage.
After arriving home, my throat got sore, I had trouble swallowing food (recalling that this had happened several times recently), my blurry vision got worse and then rapidly I became very nauseous.
I called 111, was a little disoriented and they sent an ambulance. The crew tested vitals which were fine and advised against A&E as relevant doctors not likely to be working as it was the weekend. They noted my migraine history and wondered whether I had a migraine, I was certain this wasn't the case. A happy medium was reached by me seeing an out of hours GP at the hospital. By this time, I additionally had a cracking headache.
He quickly called medics, who refused to see me. The GP took a urine sample which showed high sugar but not high ketones. GP referred me back to A&E, I had blood tested which again indicated high sugar but not high ketones. My headache and nausea were put down to not being used to having high sugar and stress (I'm dealing with a stressful situation atm). I was given metformin, one a day to start and informed more likely to be type 2 due to ketones not being raised.
The doctor said I was more likely to develop type 2 due to having Hashimotos and my age.

Hashimotos is an autoimmune condition and I understand that this has a higher comorbidity with other autoimmune diseases (e.g. type 1 diabetes).

I have not shaken off the nausea and headache today and have felt ok at times but also very grim at times.

If you have any comments or advice in light of the above I would be very grateful.

Many thanks

 

[Bex72]

I just wanted to thank you all for your caring messages. I should have mentioned all info in initial post, apologies, this is very new to me. I am learning. All the best.

 

[Antje77]

There really is no way to tell if you have T1 or T2 at the moment. So the only thing we can go by is worst case scenario, as you're showing all the symptoms of worst case except the high ketones.

For T1's, high blood glucose plus nausea equals alarm bells. How many hours ago were your ketones tested with a blood test?

Of course, all those symptoms (apart from the diabetes symptoms) could be attributed to a stomach flu as well.

I 'm sorry you're having such a rough time and I really don't know what would be the best course of action right now.

 

[MrsA2]

my migraines vary enormously, sometimes headache, sometimes nausea sometimes not etc BUT never ignore or blame all other symptoms on it. Keep diabetes aware and come back to us after doctors tomorrow

 

[Bex72]

Thanks so much for the advice and caring messages. It is a great comfort. I feel more ready for seeing my GP.

 

[JennaLilly]

Hi Bex, firstly, long term, don't panic, having diabetes is not as hard as everyone thinks. It takes time and dedication to get used to but really injecting and checking sugars becomes like cleaning your teeth, just another routine you have to do in a day. However, please keep pushing for repeated checks on ketones, maybe even ask for a meter so you can check yourself. In my experience GPs don't always have the specialist knowledge they should have about diabetes. I called a doctor after suffering symptoms and had a meter left over from having gestational diabetes. I checked sugars and was 22. The GP told me that infections or virus may cause raised sugar levels and should call back on monday (we were on friday) By the time I took myself to A&E my ketones were 3.3 (nearly in a coma) Even after 2 days on metformin, with no improvement doctors wouldn't concede to give me the insulin I was asking for, telling me it was unlikely to be type 1. Again, i don't tell you this to scare you, it is easily fixed with insulin, i just worry about the lack of understanding with some doctors after my experience. We all put so much trust in medical professionals and while most of them that I have had contact with are brilliant beyond measure, there are some who you need to push to listen. When the stakes are so high it is not worth taking the risk!

 

[Bex72]

Hi Bex, firstly, long term, don't panic, having diabetes is not as hard as everyone thinks. It takes time and dedication to get used to but really injecting and checking sugars becomes like cleaning your teeth, just another routine you have to do in a day. However, please keep pushing for repeated checks on ketones, maybe even ask for a meter so you can check yourself. In my experience GPs don't always have the specialist knowledge they should have about diabetes. I called a doctor after suffering symptoms and had a meter left over from having gestational diabetes. I checked sugars and was 22. The GP told me that infections or virus may cause raised sugar levels and should call back on monday (we were on friday) By the time I took myself to A&E my ketones were 3.3 (nearly in a coma) Even after 2 days on metformin, with no improvement doctors wouldn't concede to give me the insulin I was asking for, telling me it was unlikely to be type 1. Again, i don't tell you this to scare you, it is easily fixed with insulin, i just worry about the lack of understanding with some doctors after my experience. We all put so much trust in medical professionals and while most of them that I have had contact with are brilliant beyond measure, there are some who you need to push to listen. When the stakes are so high it is not worth taking the risk!

Hello JennaLilly, thanks for your message. I agree with you completely, you cannot trust professionals to make the right call all of the time, they are human. Your message is very reassuring. I will hopefully see my GP today and will prepare some questions in advance. I think a diagnosis of which type will emerge with time, however I am conscious of the importance of ketones now.
I'm hoping that I am just carrying too much fat around the middle and can reverse this with diet. All those close to me are shocked that this has happened, I thought I was low risk. Thanks again for sharing and helping me to understand more. All the best.

 

[AtkinsMo]

All of the advice has been caring and thoughtful, but nobody has yet mentioned to start a Low Carb Diet right now. (Whether you’re T2 or T1 a Low Carb diet will do you no harm.

I know that finding out the nature of your diabetes is critical, but in any case, a strict Low Carb diet may help to alleviate your distressing symptoms and make you feel a lot better.

Sign up for the Low Carb Programme on Diabetes.co.uk and start it straight away. Or if you’re more a ‘book’ person buy New Atkins for a New You or Tim Noakes Real Meal Revolution. Both books have relevant health information and chapters on managing diabetes with LCHF diet.

Or, if you’re a bit of a ‘Health Geek’ Richard Bernstein’s ‘Diabetes Solution’ is superb, but it is hard going!

 

[Bex72]

Hi AtkinsMo, I am reaching that conclusion too. I recall seeing some of the Michael Mosley programme on this subject. I ordered the 8 week blood sugar diet recipe book this morning and a ketones monitor. All the online tools put me at low risk based on bmi etc. However, I realise that middle age spread, lockdown excesses and stress could have caused a change in me. I would much prefer to help myself with a healthier diet. Although I cycle and walk a lot, truth be told my middle has never been so wobbly! Must do some pilates.
Thanks for your message, I don't want to feel like this.

 

[KK123]

All of the advice has been caring and thoughtful, but nobody has yet mentioned to start a Low Carb Diet right now. (Whether you’re T2 or T1 a Low Carb diet will do you no harm.

I know that finding out the nature of your diabetes is critical, but in any case, a strict Low Carb diet may help to alleviate your distressing symptoms and make you feel a lot better.

Sign up for the Low Carb Programme on Diabetes.co.uk and start it straight away. Or if you’re more a ‘book’ person buy New Atkins for a New You or Tim Noakes Real Meal Revolution. Both books have relevant health information and chapters on managing diabetes with LCHF diet.

Or, if you’re a bit of a ‘Health Geek’ Richard Bernstein’s ‘Diabetes Solution’ is superb, but it is hard going!

Hi, that's probably because the poster has no idea yet what type she is and is right at the start of all of this. Launching immediately into a low carb diet is not appropriate right now in my opinion as it could mask any current investigations that are ongoing. Of course the poster needs to monitor glucose readings/ketones and any other symptoms but the absolute priority is getting a proper diagnosis, following which she can then decide what diet to adopt (along with insulin if type 1).

 

[Oldvatr]

My mother was T1D for 50 years, but i am T2D and not using insulin. I did not have any symptoms of T2D when I was diagnosed by a random check. My bloods were running very high at the time, but I had no thirst, no frequent peeing, and I slept through the night without disturbance. Your symptoms do align with T1D and you are doing the right thing by insisting on being properly checked out. I am amazed at how you have been treated so far.

As regards Metformin, it takes weeks to build up and even then is very limited in its capacity to reduce blood sugar (aprox 2 or 3 mmol/l even on a full dose good day. Reducing carbs is a good strategy, so well done for taking up that challenge. It is almost immediate and quite effective. You can tailor it to suit your own personal condition, which will revel itself as you learn from your testing with the meter. My advice is to start a log of testing and food content details firstly to work out which foods are ok, and those to avoid, but also it is something to share with doctors etc since it is a record of progress etc.

Good luck with the medics. Hope they stop messing around and do some proper diagnostics.

 

[Bex72]

Hi, that's probably because the poster has no idea yet what type she is and is right at the start of all of this. Launching immediately into a low carb diet is not appropriate right now in my opinion as it could mask any current investigations that are ongoing. Of course the poster needs to monitor glucose readings/ketones and any other symptoms but the absolute priority is getting a proper diagnosis, following which she can then decide what diet to adopt (along with insulin if type 1).

Thanks KK,
That's a good point. You're right, I am at the very beginning. I've written down my questions and am waiting for the call from a GP. Hopefully I'll be a little wiser by the end of the day.

 

[Bex72]

My mother was T1D for 50 years, but i am T2D and not using insulin. I did not have any symptoms of T2D when I was diagnosed by a random check. My bloods were running very high at the time, but I had no thirst, no frequent peeing, and I slept through the night without disturbance. Your symptoms do align with T1D and you are doing the right thing by insisting on being properly checked out. I am amazed at how you have been treated so far.

As regards Metformin, it takes weeks to build up and even then is very limited in its capacity to reduce blood sugar (aprox 2 or 3 mmol/l even on a full dose good day. Reducing carbs is a good strategy, so well done for taking up that challenge. It is almost immediate and quite effective. You can tailor it to suit your own personal condition, which will revel itself as you learn from your testing with the meter. My advice is to start a log of testing and food content details firstly to work out which foods are ok, and those to avoid, but also it is something to share with doctors etc since it is a record of progress etc.

Good luck with the medics. Hope they stop messing around and do some proper diagnostics.

Thanks Oldvatr,
It isn't clear cut is it! I may be wrong but felt I may have been passed around in attempt to push the cost onto my GP. You live and learn. Good to know more on Metformin (thanks). It took a year to get the dose right when I started levothyroxine (for Hashimotos Thyroiditis), as it had to be increased gradually and I required a replacement organ dose.
Thanks also for tips on recording consumption, I am being careful not to eat anything that could make me worse.