Confused and feeling meh!

[Leadinglights]

Usually when people are started on metformin the dose is increased gradually over a few weeks to allow the stomach to get used to it but not usually increase if people are still getting stomach problems.
You are likely feeling unwell because of that and high blood glucose.
The blood test results especially the antibody tests can take a while as there are very few labs who do them but c-peptide if they have done that is usually quicker.
I hope you can get more help soon.

 

[Charmaine86]

Hi @Charmaine86 - my story is very similar with an initial bout of Psoriasis - this is the first part of my journey (sounds very similar):

Started after a routine blood test following another diagnosis (Psoriasis - another auto-immune condition) - given a glucometer and strips and told to test before and 2hrs after food (Up to 10 times a day - ouch!) - My HbA1c was only 49 but my eagle-eyed doctor had noticed that over the course of a couple of weeks (when I was being diagnosed/treated for Psoriasis) that the weight was falling off me (In the end I had lost 2 1/2 stone over the course of a month) so she effectively ruled out Type 2 and ordered an auto-antibody test - was put on Metformin in the mean time whilst waiting for the results (which did precisely nothing for me other than give me dreadful stomach problems which I won't elaborate on!)
It is the auto-antibody test that takes ages to come back which is a pain but hopefully they will get to the bottom of things soon - the rest of my diabetes journey is here:

Thread 'Diaversary - and a thank you'

Jul 8, 2025

I knew it was close so had a look on the NHS app and it is today!


Not a significant milestone, I know, and not even close to many people on here but it has been quite a journey. I thought I'd share it as it may help others:

Started after a routine blood test following another diagnosis (Psoriasis - another auto-immune condition) - given a glucometer and strips and told to test before and 2hrs after food (Up to 10 times a day - ouch!) - My HbA1c was only 49 but my eagle-eyed doctor had noticed that over the course of a couple of weeks (when I was being diagnosed/treated for...

• mashedupmatt
• Replies: 11
• Forum: General Message Board

• 
• 
• 

Thank you for sharing your story, it’s very inspiring. Your story is very similar to mine, how are you managing the psoriasis niw of you don’t mind me asking and how long did the antibody results take do you remember?

 

[Charmaine86]

I was in a in a similar situation to you. Asymptomatic, healthy BMI and diet and very active. Started feeling very ill after recovering from covid. Blood test came back with Hbac1 of 15 and high ketones. I had also been losing weight. However I was never put on oral meds, immediately put on insulin which brought the blood sugar under control and a low carb diet 60g. Diagnosed as D2. And yes I felt dreadful until I got my blood sugars down. Luckily my practice has specialist diabetes nurses, so immediate decisions and treatment.

Thank you for sharing, I can’t believe how unwell I have felt over the last few weeks and it’s frustrating that the nurse and my GP have what feels like washed their hands as they are saying it’s down to the hospital to make any changes to medication. Hopefully I will hear soon and be on a better treatment plan

 

[Charmaine86]

Usually when people are started on metformin the dose is increased gradually over a few weeks to allow the stomach to get used to it but not usually increase if people are still getting stomach problems.
You are likely feeling unwell because of that and high blood glucose.
The blood test results especially the antibody tests can take a while as there are very few labs who do them but c-peptide if they have done that is usually quicker.
I hope you can get more help soon.

Thank you, they did take other bloods but no mention of c-peptide that I recall but there’s a possibility and it just wasn’t mentioned. I started off with 1 metformin for 1 week and then 2 until I was seen at the hospital who then told me to take 4- not able to tolerate this and tried 3. It still no improvement and I have since dropped back to 2 but no change/improvement from a gastro point of view.

There has also been no improvement in the blood glucose levels and I have been on metformin for about 7 weeks- it’s all very strange!

 

[Leadinglights]

Thank you, they did take other bloods but no mention of c-peptide that I recall but there’s a possibility and it just wasn’t mentioned. I started off with 1 metformin for 1 week and then 2 until I was seen at the hospital who then told me to take 4- not able to tolerate this and tried 3. It still no improvement and I have since dropped back to 2 but no change/improvement from a gastro point of view.

There has also been no improvement in the blood glucose levels and I have been on metformin for about 7 weeks- it’s all very strange!

That again points to you being T1.
A friend was put on metformin but was still losing weight, then gliclazide added but no improvement, had the tests for T1 and was onlt then diagnosed as T1 and put on insulin and given a Libre. Immediate improvement. Age no determinant as she is nearly 80.

 

[everydayupsanddowns]

How are you feeling today @Charmaine86

Thirsty, Toilet, Tired and Thinner are the 4Ts of T1, and it sounds like you’ve had all of those in abundance, plus evidence of high BGs, and ketones too.

Your diabetes may be a little impatient and not want to wait for the results to come back (which seem to take an age for some people), so if you experience nausea, vomiting, abdominal pain, shortness of breath, or have a strange ‘fruity’ / nail varnish remover smell on your breath, please go straight to A&E, as things can change quite quickly once your body reaches the T1 tipping point.

 

[Charmaine86]

That again points to you being T1.
A friend was put on metformin but was still losing weight, then gliclazide added but no improvement, had the tests for T1 and was onlt then diagnosed as T1 and put on insulin and given a Libre. Immediate improvement. Age no determinant as she is nearly 80.

Thanks for the reply, I am 39 and my mother has Type 1 diabetes that was misdiagnosed as type 2 when she was 40 it was only after 2 years after trying every oral medication that it was found to be type 1- i feel like when I actually write it all down it becomes clearer if that makes sense that I may actually be type 1!

 

[Charmaine86]

How are you feeling today @Charmaine86

Thirsty, Toilet, Tired and Thinner are the 4Ts of T1, and it sounds like you’ve had all of those in abundance, plus evidence of high BGs, and ketones too.

Your diabetes may be a little impatient and not want to wait for the results to come back (which seem to take an age for some people), so if you experience nausea, vomiting, abdominal pain, shortness of breath, or have a strange ‘fruity’ / nail varnish remover smell on your breath, please go straight to A&E, as things can change quite quickly once your body reaches the T1 tipping point.

Thank you for the reply, I don’t have the thirsty or toilet symptoms. When I first got the hba1c results I didn’t have any glucose in my urine either, now it’s at the furthest point in the piddle stick but I’m guessing the metformin is trying to get rid of that.

I definitely have the tiredness well I feel like it’s more exhaustion but I may be being dramatic- I could sleep standing up at points.

I felt ok when I got up this morning- blood glucose was 15.9 and hadn’t had anything to eat since around 7pm last night.

Today I am going to try and somehow get through to the DSN at the hospital to ask for advice. I am conscious I am going on holiday next Thursday and don’t want to be feeling like this when I’m in another country- it’s bad enough when at home.

 

[helli]

Another indicator of possible Type 1 is psoriasis.
Both are auto-immune conditions which are known to "gather".

It is worth mentioning this when you talk to the DSN.

 

[mashedupmatt]

Thank you for sharing your story, it’s very inspiring. Your story is very similar to mine, how are you managing the psoriasis niw of you don’t mind me asking and how long did the antibody results take do you remember?

The Psoriasis has all but disappeared (touch wood) apart from the odd very minor flare up - it was almost like it was a pre-cursor for the the main event so haven't needed to worry about that - the auto-antibody test took roughly 3 weeks to come back and the Metformin they gave me in the meantime did precisely nothing apart from play havoc with my stomach (despite being on the slow-release one) - stopped it immediately after going on insulin and stomach was back to normal straight away

 

[rebrascora]

Have you notified your travel insurance about your diabetes diagnosis. You do not want to be in a position where you need urgent medical care and insurance doesn't cover you. Really important that you chase this up with the diabetes clinic before you go in my opinion, especially as you have so many markers for this being Type 1.

With your current situation I would be very cautious about going abroad especially as you are seeing ketones. Things could suddenly tip the balance and very quickly go horribly wrong if your insulin production is now running low. If you do decide to go away and don't get started on insulin before you leave, I would be inclined to go as low carb as you can whilst away and walk plenty. I know that will mean your holiday isn't so enjoyable as food is an important part of most people's holiday but DKA is a very serious risk I would say in your situation and it is a life threatening condition which can come on very quickly.

 

[Charmaine86]

Thank you for the helpful advice. I haven’t yet told the travel insurance as I was hoping that things would have been sorted out by the time I go and could tell them a more accurate diagnosis as I don’t want to tell them the wrong thing and risk not being covered. I wouldn’t go without insurance but unsure what to tell them as no formal diagnosis yet or is it a Type 2 until I know otherwise? I generally stick to a low carb diet anyway so this shouldn’t be too much of a problem, walking may be more difficult in the 50+degree heat in Dubai but I will try.

 

[rebrascora]

If you are already eating low carb and still seeing those high levels I would be very concerned about going if I were you..... unless you can get insulin from the clinic ..... but even then, you have a very big learning curve ahead of you whilst you are on holiday as you really don't have much time to get to grips with using it. I appreciate you may have some knowledge from your mother's experience but different insulins and different bodies lead to very individual experiences of diabetes and more so when insulin is involved. Even if they don't give you a definitive Type 1 diagnosis, they can still start you on insulin before the results come through. I was started on insulin 6 weeks after diagnosis as a Type 2 and didn't get my Type 1 testing for another 2 months.

 

[Charmaine86]

The Psoriasis has all but disappeared (touch wood) apart from the odd very minor flare up - it was almost like it was a pre-cursor for the the main event so haven't needed to worry about that - the auto-antibody test took roughly 3 weeks to come back and the Metformin they gave me in the meantime did precisely nothing apart from play havoc with my stomach (despite being on the slow-release one) - stopped it immediately after going on insulin and stomach was back to normal straight away

Tanks for sharing, glad to hear your Psoriasis has improved. I am also on the slow release one but playing havoc with my stomach and does not seem to be improving blood glucose levels either.

 

[Charmaine86]

If you are already eating low carb and still seeing those high levels I would be very concerned about going if I were you..... unless you can get insulin from the clinic ..... but even then, you have a very big learning curve ahead of you whilst you are on holiday as you really don't have much time to get to grips with using it. I appreciate you may have some knowledge from your mother's experience but different insulins and different bodies lead to very individual experiences of diabetes and more so when insulin is involved. Even if they don't give you a definitive Type 1 diagnosis, they can still start you on insulin before the results come through. I was started on insulin 6 weeks after diagnosis as a Type 2 and didn't get my Type 1 testing for another 2 months.

Thanks Barbara, I am really concerned that things won’t be sorted out in time and won’t risk becoming unwell while abroad. I am also a nurse so do have some knowledge of diabetes along with my mum being type 1 but I am no expert and realise everyone’s situation is different and individual to them. When i was at the hospital last week I told the doctor I was going on holiday next week and she said it would all be sorted out by then and there would be no issues- not looking likely at the moment I don’t think!

I don’t know why she wouldn’t have given me the contact details for a secretary or DSN as I have spent most of this morning trying to get to speak to someone with no luck.

 

[rebrascora]

Did you ask the switchboard if there was a helpline for the diabetes clinic. That is the only way I can contact my clinic and then it is just an answering machine and I leave a message with details of who I am and what the problem is, emphasising anything I think is urgent..... like in your case, having high BG and ketones and not having insulin and metformin doing nothing and going on holiday abroad next week, which you are very concerned about. Then I get a call back in a working day or two after leaving the message.
Some clinics don't seem to operate a helpline but will give out phone numbers or emails for your particular DSN. I don't have a DSN as far as I am aware, I just have annual-ish appointments with the consultant, so if I need help in between I use the helpline and leave a message.

Really hope you manage to get through to someone before you are due to go. What day are you flying next week? Please do make sure to declare your diabetes diagnosis with your travel insurance even if you don't know what type yet as it is really important that they are aware and indeed they may make the decision that you are not fit to travel as you effectively have "uncontrolled diabetes" which has to be quite a high risk for them I would have thought.

 

[helli]

Previously when I spent a little time in A&E the day before travelling, I made sure I had a fitness to travel from the hospital. When I read the small print of my travel insurance policy I realised this was necessary and had to "camp out" at A&E to get the necessary documentation.
@Charmain86 I realise you have not been to A&E but I still recommend checking your policy and badgering HCPs if necessary.

 

[Charmaine86]

Did you ask the switchboard if there was a helpline for the diabetes clinic. That is the only way I can contact my clinic and then it is just an answering machine and I leave a message with details of who I am and what the problem is, emphasising anything I think is urgent..... like in your case, having high BG and ketones and not having insulin and metformin doing nothing and going on holiday abroad next week, which you are very concerned about. Then I get a call back in a working day or two after leaving the message.
Some clinics don't seem to operate a helpline but will give out phone numbers or emails for your particular DSN. I don't have a DSN as far as I am aware, I just have annual-ish appointments with the consultant, so if I need help in between I use the helpline and leave a message.

Really hope you manage to get through to someone before you are due to go. What day are you flying next week? Please do make sure to declare your diabetes diagnosis with your travel insurance even if you don't know what type yet as it is really important that they are aware and indeed they may make the decision that you are not fit to travel as you effectively have "uncontrolled diabetes" which has to be quite a high risk for them I would have thought.

I called the switchboard and they said they had put me through to the diabetic day ward as I’m presuming there are likely to be DSN’s there maybe visiting patients but the number constantly rings out and there is no option to leave a message and it cuts you off after a certain amount of time ringing.

They don’t seem to have a number for them directly and I think they may only give it out if you have been referred to them or are one of their patients, I’m not yet as still awaiting the consultant getting back to me.

 

[rebrascora]

This must be so frustrating for you. I am tempted to say, eat a couple of Mars bars to provoke a critical high and then head off to A&E. I know that would be stupid and irresponsible but you need this sorted! Just for the record I am not actually suggesting you do that, but maybe have something healthy but higher carb like a big baked potato tonight and a big bowl of porridge tomorrow morning and if your levels go above 20 and particularly if you develop ketones, get yourself to A&E.

 

[Inka]

@Charmaine86 I agree with @rebrascora Your low carb diet could be masking how serious your condition is. We can’t give advice but if it were me, I’d eat a normal meal, then go to A&E, tell them you’re being investigated for Type 1 and are feeling unwell. It’s ridiculous to leave you until the test results come back.