Diagnosed type 1.5 but no sign of hospital appt for insulin

[ReaL]

I have recently been diagnosed type 1.5 after a year managing on a low carb diet. My BS started suddenly being very high about a month ago. I am on 2000mg metaformin but it is making no difference with fasting levels of anywhere between 15 and 19. My doctor has referred me to the hospital to hopefully start on insulin but have had no word of when that might be. Just wondered how long everyone had to wait for this to happen as feel rubbish and am struggling to get through the day at work. Thanks

 

[ert]

I have recently been diagnosed type 1.5 after a year managing on a low carb diet. My BS started suddenly being very high about a month ago. I am on 2000mg metaformin but it is making no difference with fasting levels of anywhere between 15 and 19. My doctor has referred me to the hospital to hopefully start on insulin but have had no word of when that might be. Just wondered how long everyone had to wait for this to happen as feel rubbish and am struggling to get through the day at work. Thanks

I was in a similar position, having a specialist appointment to start insulin in a few weeks time, but ended up walking into A&E, where they started my insulin straight away. This is an option for you. You need to keep an eye on your blood ketones when your blood sugars are over 13 mmol/l.

 

[ReaL]

I was in a similar position, having a specialist appointment to start insulin in a few weeks time, but ended up walking into A&E, where they started my insulin straight away. This is an option for you. You need to keep an eye on your blood ketones when your blood sugars are over 13 mmol/l.

Hi thanks for your reply. I am keeping an eye of my ketones thanks but just feel so tired all the time and a bit fuzzy. Am back at school as a teacher and am also a bit worried about BS being out of control in the current climate as understand I might be more vunerable to poorer Covid outcomes with uncontrolled BS.

 

[ert]

Hi thanks for your reply. I am keeping an eye of my ketones thanks but just feel so tired all the time and a bit fuzzy. Am back at school as a teacher and am also a bit worried about BS being out of control in the current climate as understand I might be more vunerable to poorer Covid outcomes with uncontrolled BS.

Your high blood sugars will make you feel tired and fuzzy-headed. Hope you get it sorted.

 

[MarkHaZ123]

I have recently been diagnosed type 1.5 after a year managing on a low carb diet. My BS started suddenly being very high about a month ago. I am on 2000mg metaformin but it is making no difference with fasting levels of anywhere between 15 and 19. My doctor has referred me to the hospital to hopefully start on insulin but have had no word of when that might be. Just wondered how long everyone had to wait for this to happen as feel rubbish and am struggling to get through the day at work. Thanks

It's awful it really is

I was similar to you but I was luckily been seen and treat for type 2 until my bloods just sky rocketed

I went from 10s up to 15+ daytime and 23+ minimum on a night. They jusy wouldn't come down at all and I felt so bad all the time. I literally just wanted bed and working in an active job didn't help at all
I just rang the hospital and got an appointment to go in and confirm me type 1 and use insulin

If you aren't well enough for work then you will have to take time off..
Like someone has mentioned you could go to A&E and maybe get in that way? I'm unsure if this would work

I'd push the doctors to try and get you into the hospital or I'd try and find a number for your diabetic clinic at the hospital and try and get in quickly that way

 

[Daibell]

Hi. Your surgery can start you on insulin if needed as mine did. They could also temporarily start you on something like Gliclazide until you start insulin

 

[Swillbos]

How very distressing for you. I too had a fairly awful 3month period of suddenly being able to get below 15mmol after seven years of considering myself a reasonably well-controlled T2. You don't need to wait for your consultant appointment before (at least temporarily) changing your treatment plan. My care is shared between the GP and local hospital service, with most of the support services being offered by the hospital-based diabetic nurse clinic. I would suggest you ring your GP and ask if you can have a urgent referal to the nurse-led diabetic clinic to trial insulin while you wait for your consultant appointment. In my experience, they start you off on a very cautious dose, keep a close eye on you by phone, and order any additional blood tests you need. I ended up starting basal insulin last July with a question mark over whether I was T2 or T1.5, and did not see the consultant until Sept, by which time she had the results of the additional anti-body blood tests needed to confirm my T1.5 diagnosis.

This all assumes your local set-up is similar to mine. You say that you have been diagnosed as T1.5, in which case you are a big step ahead of where I was this time last year, you're also active on this forum, so a lot of positives, very best of luck with the next steps! xx

 

[KK123]

I have recently been diagnosed type 1.5 after a year managing on a low carb diet. My BS started suddenly being very high about a month ago. I am on 2000mg metaformin but it is making no difference with fasting levels of anywhere between 15 and 19. My doctor has referred me to the hospital to hopefully start on insulin but have had no word of when that might be. Just wondered how long everyone had to wait for this to happen as feel rubbish and am struggling to get through the day at work. Thanks

Hi there, was it your GP that diagnosed type 1.5 (which is type 1) and what was this based on? I'm guessing that he did not do a C Peptide or antibody test but has realised metformin is not working on its own and that this is what he has referred you to the hospital for? I would say do NOT hang around waiting for an appointment, however your Dr has come to the conclusion it is wrong for you to be left hanging with high glucose levels (that could go higher) and constantly having to check ketones which could change in the space of an hour. I think it is so risky! I would get straight back onto the Drs and say you are feeling ILL and your levels are still high, ask him WHEN is this appointment. You shouldn't have to but you do need to be very proactive in these circumstances as it is your health at risk. Many of us ended up with DKA and in hospital because of ignorance and a lack of urgency. Make a nuisance of yourself. x

 

[d302q1]

Agree with KK123. You need insulin, now. Don’t delay, get on the phone every morning and pester your GP.

 

[ReaL]

Hi

Thanks for all your replies. I had GAD test March 2019 which showed antibodies (I also have several other autoimmune conditions). My GP questioned if it might be 1.5 then but didn’t communicate this to me and let me get on with it as was managing with diet alone. Mid July I lost all the control I had of my BS basically overnight. I have been put on Metaformin in the last month and am now up to the highest dose. It’s not making much difference and have now also been given Sotagliptan to take. I spoke to the GP last week who says it will be quote “many many” weeks for my appt to come through from hospital as basically everything has been shut down for many months because of Covid.
I will take your advice on board. Thinking of finding out today where I have been referred to and give them a ring. The GP says she was reluctant for them to start me on insulin. I’m just a bit fed up and not feeling great. Also a bit stressed as back at work as a secondary school teacher and know that uncontrolled BS makes the probable outcome of catching Covid more serious. Thanks for all your replies.

R

 

[Daibell]

Hi

Thanks for all your replies. I had GAD test March 2019 which showed antibodies (I also have several other autoimmune conditions). My GP questioned if it might be 1.5 then but didn’t communicate this to me and let me get on with it as was managing with diet alone. Mid July I lost all the control I had of my BS basically overnight. I have been put on Metaformin in the last month and am now up to the highest dose. It’s not making much difference and have now also been given Sotagliptan to take. I spoke to the GP last week who says it will be quote “many many” weeks for my appt to come through from hospital as basically everything has been shut down for many months because of Covid.
I will take your advice on board. Thinking of finding out today where I have been referred to and give them a ring. The GP says she was reluctant for them to start me on insulin. I’m just a bit fed up and not feeling great. Also a bit stressed as back at work as a secondary school teacher and know that uncontrolled BS makes the probable outcome of catching Covid more serious. Thanks for all your replies.

R

Hi. Temporarily the GP needs to either prescribe something like Gliclazide which will stimulate the pancreas to produce more insulin or prescribe insulin. For him/her to do nothing when the clinic can't provide an appointment is not really acceptable. I was on Gliclazide for a 2-3 years before insulin which was too long but it did help initially during the honeymoon period.