So frustrated

[oops6]

Hi everyone, I hope your all doing well
This is only my second post and sadly its very much like my first, my level of frustration is through the roof.

Going back to Jan of 2016, I had a load of tests done (can't remember why) but was told to see my gp and book an appointment with the diabetes nurse. The nurse told me I was prediabetic and I needed to change my diet etc... so I did. Low carb, avoided sweets, drinking only water, I did everything I could.
In November I recognised the symptoms and tried to get an emergency appointment at the doctors. Failing that I went to the pharmacy and asked them to check my sugar levels, which were at 15.7. I called the doctor and told the receptionist what my levels were and I was seen that evening (three days after symptoms had started) I would say that within a week or slightly over I was diagnosed with type 2 and put on metformin. The tablets did nothing to help, if anything they made it worse and my levels were going into the 20s and I had ketones present. My highest ketone reading was 4. I was sent to a specialist consultant who, after two weeks and starting me on insulin, did a GAD antibody test, my result from that was 2 (they classed this test as inconclusive) however he changed my diagnosis to type 1. It then got changed again to LADA, back to type 1 and now I'm being told it's 100% not type 2 as my levels were too high at diagnosis, however it's 51% type 1 and 49% mody. I'm being referred to have a genetic test done. In 8 months I've been diagnosed with every type of diabetes and I'm no closer to getting the answer. It probably doesn't matter but it's driving me crazy!!

Is there anything else I can do to help find the answer?

Thank you in advance and sorry for the long rant

 

[Fruitella]

Are your numbers much better controlled now that you are on the insulin? Must be very frustrating for you but don't let stress push your numbers any higher . I presume they have given you a meter and strips to keep checking. Good luck.

 

[sally and james]

I'm being told it's 100% not type 2 as my levels were too high at diagnosis

You give a figure of 15.7 for a spot reading at the pharmacy - this number is certainly not indicative of T1, many T2's (who later reduce their numbers to the normal range through diet alone) have blood sugar levels much higher than this at diagnosis.

Low carb, avoided sweets, drinking only water, I did everything I could.

Can I ask, did you give up bread, pasta, rice, breakfast cereals, potatoes, pizza, anything made with flour, fruit juices, sweet fruits. Some people think that it is only sweets, puddings, cakes and sugary drinks that have to be cut out and then, to their disappointment, levels continue to rise.
You'll get there, best of luck
Sally

 

[oops6]

Yes and no, I get huge spikes after meals regardless of what I've eaten but it comes down much faster with the insulin I'm using a 1:10 ratio. I'm actually using the libre at the moment as I got it on a trial. Thank you.

 

[azure]

@oops6 The MODY tests take a while, I believe. Personally, I'd forget about them for now and concentrate n getting good control. If it is MODY, then your treatment can be re-assessed if necessary.

Many adults are assumed to be Type 2 but are actually found to be Type 1. Type 1/LADA can come on more slowly in adults. Again, don't stress over it. In the end what matters is your control.

 

[oops6]

Yep, I gave up or reduced everything I was eating, managed to loose over a stone (I was given a diet to follow from the nurse)
That is exactly what I thought. My numbers are still going up, my highest reading now (without insulin) is 29.8. I am just so confused because nothing makes any sense anymore.

 

[azure]

Yep, I gave up or reduced everything I was eating, managed to loose over a stone (I was given a diet to follow from the nurse)
That is exactly what I thought. My numbers are still going up, my highest reading now (without insulin) is 29.8. I am just so confused because nothing makes any sense anymore.

If you're Type 1 and your numbers are going up, then that could be because your honeymoon period is coming to an end.

 

[Jaylee]

Hi @oops6 ,

This may seem like a silly question.
But I've read about people in your position regarding prescribed insulin being the wrong regime, causing some confusion for the patient. (Regarding professionals not quite getting the the initial diagnosis right.)

Here it comes..
What insulin are you prescribed?

 

[oops6]

Azure thank you, that's helpful to know. I try so hard to not stress but unfortunately I was also diagnosed with ocd and have anxiety because of it. I am now getting help to try and deal with it but not knowing/understanding is literally driving me insane, I know it's stupid but I honestly can't help it

 

[oops6]

Jaylee, I have novorapid with meals and I'm on 24 units of toujeo in the evening. Should I possibly be on something else? I should mention, I did have a six month honeymoon period, I used little to no insulin during that time and then my numbers shot up and I was told to use a 1:10 ratio. Thank you

 

[neiljandcarolj]

Hi everyone, I hope your all doing well
This is only my second post and sadly its very much like my first, my level of frustration is through the roof.

Going back to Jan of 2016, I had a load of tests done (can't remember why) but was told to see my gp and book an appointment with the diabetes nurse. The nurse told me I was prediabetic and I needed to change my diet etc... so I did. Low carb, avoided sweets, drinking only water, I did everything I could.
In November I recognised the symptoms and tried to get an emergency appointment at the doctors. Failing that I went to the pharmacy and asked them to check my sugar levels, which were at 15.7. I called the doctor and told the receptionist what my levels were and I was seen that evening (three days after symptoms had started) I would say that within a week or slightly over I was diagnosed with type 2 and put on metformin. The tablets did nothing to help, if anything they made it worse and my levels were going into the 20s and I had ketones present. My highest ketone reading was 4. I was sent to a specialist consultant who, after two weeks and starting me on insulin, did a GAD antibody test, my result from that was 2 (they classed this test as inconclusive) however he changed my diagnosis to type 1. It then got changed again to LADA, back to type 1 and now I'm being told it's 100% not type 2 as my levels were too high at diagnosis, however it's 51% type 1 and 49% mody. I'm being referred to have a genetic test done. In 8 months I've been diagnosed with every type of diabetes and I'm no closer to getting the answer. It probably doesn't matter but it's driving me crazy!!

Is there anything else I can do to help find the answer?

Thank you in advance and sorry for the long rant

Hi I am new to this site I became diabetic as a result of illness no sign of diabetes I was diagnosed with severe acute pancreatitis highpercalcemia highpothirodism and to cut a long story short have you had a thyroid test or have you asked to have MRI of. Your pancreas after all pancreas is producer of insulin which keeps body in balance just a thought good luck cj

 

[Jaylee]

Jaylee, I have novorapid with meals and I'm on 24 units of toujeo in the evening. Should I possibly be on something else? I should mention, I did have a six month honeymoon period, I used little to no insulin during that time and then my numbers shot up and I was told to use a 1:10 ratio. Thank you

"Something else." Your health care professionals have prescribed a muti daily injection regime. You're all good!

I was basically checking you were also prescribed a basal insulin? (The long acting one.)
So the advice is coming from the same angle..
You probably need to do a basal test & get the Toujeo dose right? https://mysugr.com/basal-rate-testing/
Start from the ground up?
Time to consult your HCPs if your numbers have shot up. Let them know what's happening!

 

[oops6]

Hi, I have had a thyroid check, it's at the lowest range of being normal. They check quite regularly due to developing an underactive thyroid after my daughter was born. I had an argument with my gp over it as I started getting symptoms of overactive thyroid and took myself off the tablets (cutting a long story short, I was right and it repaired itself) he just can't accept my numbers are normal now I haven't asked for a scan but will bring it up at my next appointment, thank you.

Thank you, I'll have a look at the link and see if I can work it all out.

 

[Damtov8]

Hi everyone, I hope your all doing well
This is only my second post and sadly its very much like my first, my level of frustration is through the roof.

Going back to Jan of 2016, I had a load of tests done (can't remember why) but was told to see my gp and book an appointment with the diabetes nurse. The nurse told me I was prediabetic and I needed to change my diet etc... so I did. Low carb, avoided sweets, drinking only water, I did everything I could.
In November I recognised the symptoms and tried to get an emergency appointment at the doctors. Failing that I went to the pharmacy and asked them to check my sugar levels, which were at 15.7. I called the doctor and told the receptionist what my levels were and I was seen that evening (three days after symptoms had started) I would say that within a week or slightly over I was diagnosed with type 2 and put on metformin. The tablets did nothing to help, if anything they made it worse and my levels were going into the 20s and I had ketones present. My highest ketone reading was 4. I was sent to a specialist consultant who, after two weeks and starting me on insulin, did a GAD antibody test, my result from that was 2 (they classed this test as inconclusive) however he changed my diagnosis to type 1. It then got changed again to LADA, back to type 1 and now I'm being told it's 100% not type 2 as my levels were too high at diagnosis, however it's 51% type 1 and 49% mody. I'm being referred to have a genetic test done. In 8 months I've been diagnosed with every type of diabetes and I'm no closer to getting the answer. It probably doesn't matter but it's driving me crazy!!

Is there anything else I can do to help find the answer?

Thank you in advance and sorry for the long rant

Try joining the Type 2 Diabetes Rebels Facebook group because there are people there who have a lot of knowledge and they may be able to advise you. This group also has a very good food list and if you stick to it it might help your recovery. You have to sign up and wait to be accepted and then log back in within 24 hours.

 

[azure]

Try joining the Type 2 Diabetes Rebels Facebook group because there are people there who have a lot of knowledge and they may be able to advise you. This group also has a very good food list and if you stick to it it might help your recovery. You have to sign up and wait to be accepted and then log back in within 24 hours.

The OP is being treated as Type 1

(If you're using the app, you might not see the diabetes type under their name)