I officially cannot be diagnosed...

[SB.25]

So after having every blood test imaginable - they cannot diagnose which type of diabetes I have.

I have now seen two consultants and both have been unable to diagnose my diabetes - they have said at this time they cannot tell is I am T1, T2 or a rare form of MODY. They have also confirmed there are no further tests they can do at this stage which would help to classify me.

For now, on my medical records it says that I am an 'insulin requiring diabetic' and I am under the care of T1 specialists. I have been told that in 5 years time they may see if gliclazide is suitable for me, but for now I must stick on a basal and bolus regime (Levemir and Humalog) as it is working so well. It is hoped that I will shortly go onto Fiasp insulin as I have terrible rises after eating despite doing my bolus up to 30 minutes before (especially in the mornings!). My current hba1c is 51, compared to 103 on diagnosis and so I am happy with that progress although I still need it to get better.

I thought that I would be really upset about still not having a diagnosis, but it hasn't troubled me too much. Whilst it can be frustrating, I just need to remember that the right treatment is much more important than the type .

I wanted to post this so that others can see that its OK not to have a diagnosis months after initial diagnosis.

I also wonder how many others are in the same position?

 

[Antje77]

I also wonder how many others are in the same position?

Well, not exactly, as I haven't been tested for MODY or other antibodies than the GAD ones, but happy with a presumed T1, and my specialist is too

 

[Rachox]

I didn’t know whether to award a ‘winner’s star’ or a ‘hug’. I chose to give you a hug but you deserve a winner too for being so philosophical about your lack of definite diagnosis. Thank you for posting, you may well help others in your situation.
Very well done on your reduction in HbA1c despite your no doubt stressful circumstances.

 

[Diakat]

I like your acceptance but also offer a hug for waiting so long while they tried to figure it out.

 

[SB.25]

I didn’t know whether to award a ‘winner’s star’ or a ‘hug’. I chose to give you a hug but you deserve a winner too for being so philosophical about your lack of definite diagnosis. Thank you for posting, you may well help others in your situation.
Very well done on your reduction in HbA1c despite your no doubt stressful circumstances.

thanks! I mean, all they have established is I have very little pancreatic function, which may get worse over time or it may stay the same and still be rubbish. I think for now the doctors are happy for me to be under the care of a T1 specialist and I'm not going to get my hopes up of coming off of insulin

 

[jjraak]

Hi @SB.25
can only echo the above sentiments.

Kudos for your level headed approach to how it's turned out diagnosis wise,
but also a hug for the lack of clarity, at what type you are.

Like you say the treatment IS more important then the NAME of it, for sure.
and it does seems to working (well done, you ) so why rock the boat.

i do wish you good luck heading into the future, and getting a definitive diagnosis.
best wishes for the months ahead, and keep up the fantastic progress.

 

[Ronnie_dog]

So after having every blood test imaginable - they cannot diagnose which type of diabetes I have.

I have now seen two consultants and both have been unable to diagnose my diabetes - they have said at this time they cannot tell is I am T1, T2 or a rare form of MODY. They have also confirmed there are no further tests they can do at this stage which would help to classify me.

For now, on my medical records it says that I am an 'insulin requiring diabetic' and I am under the care of T1 specialists. I have been told that in 5 years time they may see if gliclazide is suitable for me, but for now I must stick on a basal and bolus regime (Levemir and Humalog) as it is working so well. It is hoped that I will shortly go onto Fiasp insulin as I have terrible rises after eating despite doing my bolus up to 30 minutes before (especially in the mornings!). My current hba1c is 51, compared to 103 on diagnosis and so I am happy with that progress although I still need it to get better.

I thought that I would be really upset about still not having a diagnosis, but it hasn't troubled me too much. Whilst it can be frustrating, I just need to remember that the right treatment is much more important than the type .

I wanted to post this so that others can see that its OK not to have a diagnosis months after initial diagnosis.

I also wonder how many others are in the same position?

Yes, me, I’m in exactly the same position.
I’m quite strict with my eating and barely use my humalog bolus, but if I ever have to it takes hours to work. I’m going to ask to switch to a faster acting insulin.
Recently the DN asked if I wanted further tests. I said no and feel that the treatment plan is more important.

 

[SB.25]

Yes, me, I’m in exactly the same position.
I’m quite strict with my eating and barely use my humalog bolus, but if I ever have to it takes hours to work. I’m going to ask to switch to a faster acting insulin.
Recently the DN asked if I wanted further tests. I said no and feel that the treatment plan is more important.

Interesting. I’m not too strict with my diet anymore to be honest. When I did go extra low carb I felt terrible and whilst I appreciate it works for some people, as I’m only 26 years old I couldn’t stand having to live the rest of my life feeling so ill.

I’m happy to have the insulin and will just dose accordingly to what I eat

 

[becca59]

Well done for being philosophical. As you say the treatment working is the most important thing.

 

[SB.25]

Well done for being philosophical. As you say the treatment working is the most important thing.

Thanks!

Yes the treatment is working well and so I won’t get my hopes up about coming off of the insulin any time soon!

 

[SB.25]

Having been a T1 (while I realise you don't appear to fall into any particular camp) and all my life having to do the job my CBA pancreas cant be bothered to do, being philosophical and open to it and not letting it get you down, is I find the best way to deal with it.

You should get a badge made that just says "Unique"

Take care

Thanks! Yes it would be nice to be a particular type but if they can’t diagnose - I’ll just roll along with it.

To be honest, given the treatment I’m on and the fact my pancreas is pretty useless, when people I meet on a daily basis ask, I just say type 1 (for ease).

If it turns out in a few years I can come off insulin (although my consultants are doubtful) then that will be a nice little treat!

 

[Member496333]

Have you had an ultrasound to determine or rule out fatty pancreas? Obviously I'm not second guessing your doctors/endos but on the face of it this would kind of, at a very basic level, be explainable as simultaneous resistance and deficiency through fatty pancreas and fatty liver.

Just thinking out loud.

 

[SB.25]

Have you had an ultrasound to determine or rule out fatty pancreas? Obviously I'm not second guessing your doctors/endos but on the face of it this would kind of, at a very basic level, be explainable as simultaneous resistance and deficiency through fatty pancreas and fatty liver.

Just thinking out loud.

Hi, no I haven’t had that - it’s never come up.

I don’t think they are overly concerned about insulin resistance, instead the c peptide has revealed I basically only make a tiny amount of insulin. I guess I could ask them at my next appointment to see if they will do a scan.

Are there any other symptoms of fatty pancreas and liver?

 

[Member496333]

Are there any other symptoms of fatty pancreas and liver?

Classically, in the case of the liver, insulin resistance. Possible insulin deficiency if the pancreas is also clogging up. I don't know if there are any other outward facing indicators.

To my knowledge, the standard of care tends to assume beta cell death in insulin deficiency, but some now think it can also be caused by a pancreas impaired by fat buildup. Might be worth asking the question, but I don't know what sort of response you'd get. I suspect something along the lines of grandmothers sucking eggs, but it can't hurt to mention it if you're curious.

Best of luck in any case. It must be a very unsettling position to be in.

 

[SB.25]

Classically, in the case of the liver, insulin resistance. Possible insulin deficiency if the pancreas is also clogging up. I don't know if there are any other outward facing indicators.

To my knowledge, the standard of care tends to assume beta cell death in insulin deficiency, but some now think it can also be caused by a pancreas impaired by fat buildup. Might be worth asking the question, but I don't know what sort of response you'd get. I suspect something along the lines of grandmothers sucking eggs, but it can't hurt to mention it if you're curious.

Best of luck in any case. It must be a very unsettling position to be in.

Ok I will ask. I mean I’m only 26 and always been slim so I’m unsure whether they would take my request any further (although I know that a lot of slim people can have fat around organs). In fact prior to diagnosis I lost a stone in 3 weeks!

Thanks for the tip!

 

[Member496333]

Ok I will ask. I mean I’m only 26 and always been slim so I’m unsure whether they would take my request any further (although I know that a lot of slim people can have fat around organs). In fact prior to diagnosis I lost a stone in 3 weeks!

Thanks for the tip!

Sure thing. Fatty organs definitely don't need to be accompanied by obesity. Your age makes it less likely, but again not certain. In any case I'm sure your doctors know what they're doing. Losing a stone in three weeks does sound like quite a dramatically quick loss of insulin secretion, which I guess signals autoimmune or some other major pancreatic issue.

Hope you get the answers you're looking for eventually.

 

[SB.25]

Sure thing. Fatty organs definitely don't need to be accompanied by obesity. Your age makes it less likely, but again not certain. In any case I'm sure your doctors know what they're doing. Losing a stone in three weeks does sound like quite a dramatically quick loss of insulin secretion, which I guess signals autoimmune or some other major pancreatic issue.

Hope you get the answers you're looking for eventually.

Yes, we can’t be sure. Shame I put all the weight back on now though lol!

 

[Adrian64]

Hi SB.25. Glad to see you've got your head screwed on right. Treatment is a lot more important than a title, although it would be intellectually interesting to know for sure. Personally am a T2 diabetic but on insulin. Found tablets didn't sit well with my digestive system. As for the metformin lets not even go down that road. I'm on a bolus dose of fast acting insulin and daily dose of long acting insulin and find I get better control with this method than tablets alone. The only diabetic tablet I do take is Empagliflozin (stops kidneys reabsorbing as much sugar, thus lowering blood sugar levels), which I occasionally have to omit if my Blood sugar isn't high enough.
I guess what I'm trying to say is that IMHO their is a definite up side to insulin control for some. However, medication changes should always be agreed with your diabetic care professional.

 

[SB.25]

Hi SB.25. Glad to see you've got your head screwed on right. Treatment is a lot more important than a title, although it would be intellectually interesting to know for sure. Personally am a T2 diabetic but on insulin. Found tablets didn't sit well with my digestive system. As for the metformin lets not even go down that road. I'm on a bolus dose of fast acting insulin and daily dose of long acting insulin and find I get better control with this method than tablets alone. The only diabetic tablet I do take is Empagliflozin (stops kidneys reabsorbing as much sugar, thus lowering blood sugar levels), which I occasionally have to omit if my Blood sugar isn't high enough.
I guess what I'm trying to say is that IMHO their is a definite up side to insulin control for some. However, medication changes should always be agreed with your diabetic care professional.

Interesting.

The only tablet they put me on is metformin - which done nothing really. They were going to try gliclazide but as I’m only 26 and not overweight (and has lost a stone in 3 weeks) they initially presumed T1 and so I went on insulin. They also know I don’t make anywhere near enough of my own insulin - so I’ll just keep rolling on with the insulin treatment for now!

 

[ickihun]

If I was a guessing man/woman I'd bet on you being a type1.
How much insulin do you need?