Scared and confused

[Erbie]

Hi all

I was asked by my GP to get a blood test done, first about 8 months ago and latest one last week.

I was asked for a telephone appointment with the GP who told me that the first blood test was 70 when normal is 50 and the most recent is 130 which is very dangerous.
She said she can't treat me with medicine and I will need to attend the diabetes clinic who will probably put me on insulin. I can't find anywhere numbers that equal this.
I asked is there anything I can do in the meantime while I'm waiting for the referral and was told that if I'm feeling very unwell to go to the A&E.

I'm really concerned and confused.
My diet (although generally healthy) contains way to much carbs and sugar. So for the past day I've not consumed any sweets, sugar etc and switched to wholemeal bread and brown rice etc but I'm really worried. Her attitude and lack of advice has left me not knowing what to do or expect.

 

[MarkMunday]

If those tests are HBA1c in mmol/mol, yes, you need to get medical attention ASAP. You could be on the verge of ketoacidosis, which can be fatal if not attended to. Only insulin stops it. Go to the A&E.

 

[Erbie]

I know that now is probably not the time to question this, but surely my GP should have advised me to go to A&E straight away?

 

[xfieldok]

If you are in the UK, I was 122 on diagnosis and threatened with insulin. I did some research and kept coming back to this site. I decided to go keto less than 20g per day of carbs.

Please click on the link in my signature. It is by one of our gurus. Don't be scared, you can turn this around if you want to.

 

[Brunneria]

Hi and welcome @Erbie

did your doc give you any advice on what symptoms to look for, to indicate if you should go to A&E?
this is a link which will give you some guidance
https://www.nhs.uk/conditions/diabetic-ketoacidosis/
and did your doc give you an idea of how long it will take for your clinic appt to come through?

If you feel the need for medical advice, then please call 111 and explain the situation. The phonelines are open 24/7 so you don’t have to worry about opening hours.

 

[EllieM]

I was asked for a telephone appointment with the GP who told me that the first blood test was 70 when normal is 50 and the most recent is 130 which is very dangerous.

I am very unimpressed that your doctor said nothing when your hba1c was 70, he should have done more tests then and advised you of the fact that you were diabetic. Wait till you've had your current issues sorted out but after that I'd be very tempted to complain strongly about this, your doctor has let you down.

There are two main types of diabetes, T1 and T2 (T2 is ten times more common than T1 and is strongly genetic, so also more likely if you have relatives with it.)

T2s are insulin resistant, they can't process carbs properly and vainly try to produce more and more insulin to keep their blood sugar levels normal - eventually they can't produce enough and the levels rise. The condition can often be managed without medication by just reducing carbohydrate levels to that which the body can cope with. (And if your doctor had diagnosed T2 when your hba1c was 70 you could have modified your diet then.)

T1 are the opposite, an autoimmune condition means that they gradually stop producing insulin altogether. They need to inject insulin but have more freedom over diet than T2s.

Now there's no way for us to tell whether you are T1 or T2 (that's for your doctor to know) but either way you need treatment in the very near future. T1s die if they are not put on insulin in time, and even if you are T2 those levels are so high that they may decide to put you on insulin temporarily to give your body a break.

I second the advice to call 111 and explain your situation.

I know that now is probably not the time to question this, but surely my GP should have advised me to go to A&E straight away?

Your doctor has already proved his/her negligence by saying nothing when your hba1c was 70.....

Realistically, your doctor is probably assuming you are T2, and diabetic ketoacidosis is pretty rare in this group. The issue is that we don't know how long it will take for your appointment to come through, and whichever you are you need treatment now and not in a couple of months time.

Good luck.

 

[Daibell]

Hi. a value of 130 (14%) is very high. I was 13% at diagnosis and hyper i.e. not really with it but avoided DKA. Do seriously reduce your carbs immediately. That means all carbs. Wholemeal bread is still a carb so read the labels for total carbs. What is your BMI? If you are fairly slim you are almost certainly T1 (LADA) and need the two tests, GAD and C-Peptide, to confirm that. My GP was just as negligent and so common with GPs. If you are slim, insist on the T1 tests or insist on a referral to the diabetes clinic. If you are overweight, T2 becomes more likely and reducing the carbs should have a great effect.

 

[Erbie]

Hi everyone

Thank you all so much for your answers and advice.

Filling from suggestions I called 111 who then made me an appointment with my primary healthcare provider for an hour later, really impressed.

I have just got back and had a urine test for ketoins (?) which were negative, so big relief there and the blood prick test which was 17, which was high but not alarmingly.

She told me the referral to the diabetes clinic was a 2-3 month wait and that the GP was negligent in doing nothing and not prescribing me metformin while I waited and giving me no advice whatsoever.

So I now have the prescription and feel much better.

I am overweight but lead an active lifestyle, my diet is not good though. So looking like T2 I imagine.

I have lots to learn!

Thanks again, its lovely to have such an active community with helpful people. I'll be sticking around

 

[Resurgam]

my Hba1c was 91 at diagnosis, blood glucose at that moment 17.1.
I instantly went back the the way of eating which has always made me feel well and all owed me to control my weight. It is called various things, but it is basically the Atkins diet.
grain potatoes sugary fruits are all off the menu. I can eat meal fish seafood, eggs and cheese. I have salads, stirfries and low carb veges - and my levels are normal. It took about 6 months to get right back to normal, but my daily glucose levels were normal again from quite early in the process

 

[JoKalsbeek]

Hi all

I was asked by my GP to get a blood test done, first about 8 months ago and latest one last week.

I was asked for a telephone appointment with the GP who told me that the first blood test was 70 when normal is 50 and the most recent is 130 which is very dangerous.
She said she can't treat me with medicine and I will need to attend the diabetes clinic who will probably put me on insulin. I can't find anywhere numbers that equal this.
I asked is there anything I can do in the meantime while I'm waiting for the referral and was told that if I'm feeling very unwell to go to the A&E.

I'm really concerned and confused.
My diet (although generally healthy) contains way to much carbs and sugar. So for the past day I've not consumed any sweets, sugar etc and switched to wholemeal bread and brown rice etc but I'm really worried. Her attitude and lack of advice has left me not knowing what to do or expect.

Ditch the rice and the bread. It's all carbs, no matter whether white, brown, wholemeal or whatever.... And it's the carbs you can't process. https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html Change your diet drastically and insulin is not a forgone conclusion, not at all. I'm glad you called 111 and got some proper help, but yeah, it's a long wait for everything else... Might as well take the bull by the horns in the meantime. Get yourself a meter and try and get your blood sugars under control ahead of time.

You can do this.
Jo

 

[DumfriesDik]

Well done @Erbie, you're on the start of your journey now, come back for support, there are lots of great people here who have helped me.

 

[Brunneria]

Well done for ringing 111 and taking an active decision.

please stick around the forum. Read, ask questions, follow links. It will all seem overwhelming to start with. But take it easy, and it will all gradually become clear.

You will probably read this sometime in the morning (since you posted last, last night).
Have you had breakfast yet?
Typical breakfasts are very carby; toast, cereal, porridge, muesli.
If you want to try low carbing, then those carbs are not a good idea.
Better options would be bacon, eggs, sausages, ham, Cooke baked, grilled, fried or scrambled, all served without bread.

hope that helps!

have a look at the www.dietdoctor.com website for inspiration on food. It will explain a lot and has some excellent menus and recipes to give you an idea of what works. Low carb food can be delicious, filling and very nutritious.

 

[toddy35]

Erbie, Hi I just wanted to say, 'welcome to the forum'. I was recently diagnosed too, with almost zero support but I did receive a letter from the GP saying I'd be able to access the myDesmond site as we're still in lockdown. You just need to use the enquiry form and leave a few details. It was v quick for me to sign-up and you don't need your NHS number. I'm very new so no expert but found the videos in the learning sessions really easy to follow.
However I would reinforce the value of this Forum, it's ace and everyone's been really helpful. Especially the advice about keto, literally since I started it just about two weeks ago my daily meter measurements have been back in the normal range.
If you don't have a meter, just buy one, if you can't afford it some suppliers will give you one free. I got a free Contour One within about a week. I have to buy strips of course but the daily reassurance is worth it.
There are lots of other meters, I'm not saying that one's any better, I wouldn't know. Just that it came quickly and was free which is what mattered to me.
Good luck on your educational journey, take to keto - you won't be hungry after the first few days. As it says above diet doctor.com is a great resource.

 

[VashtiB]

Hello and welcome

I am glad you got some help. I think it is quite sad how little support people get with this condition. I would absolutely second the advice to get a meter. Everyone has a different level of carbs that their body can tolerate.

Read around on this site and ask questions this is a great place to get information, advice and support.

Welcome.

 

[VashtiB]

Also should add it can feel very overwhelming at first but this site will help and you will find that you can learn a lot quite quickly with the right support. It can be very emotional getting the diagnosis even without what you went through so take it easy on yourself.

 

[EllieM]

I have just got back and had a urine test for ketoins (?) which were negative,

This is to check whether you are suffering from diabetic ketoacidosis, and the fact that they were negative makes a T1 diagnosis less likely. As the others have said, congrats on getting help, and good luck on getting on top of this condition. A blood testing meter will let you know whether you can cope with what you're eating.