New type 1

[Shaza114]

Am struggling with diagnosis and feeling abandoned. Waited 4 weeks to get results, which were given in a quick phone call and the nurse saying the hospital team would be in touch. Didn't have brain in gear to even ask for hb1a result never mind any other questions. Metformin is keeping levels down (why can't I stay on this?) Have been doing lots of reading but I think it's sending me into a bit of a panic especially as I don't know when I'll get a hospital appointment. Any tips to keep me going?
Thank you.

 

[Bruce Stephens]

Metformin is keeping levels down (why can't I stay on this?)

Because (presuming the diagnosis is correct) for a while you still have insulin-producing cells in your pancreas, but that won't last.

 

[Shaza114]

Thank you. My next question is how long does that period last? (Or is that asking how long is a piece of string!) Need to chase up for appointment on Monday.

 

[Bruce Stephens]

I think your guess is about right: weeks or months, or (presumably rarely) years.

So yes, makes sense to make sure they're keeping track of you!

 

[Bruce Stephens]

I should have mentioned it's known as the honeymoon phase.

 

[leonS]

Let me fill in a few of the blanks for you, most of this is guesswork!
You have a smarter than average Dr. He discovered that you have diabetes. Many Doctors would have said you are older (not in your teens) you MUST be type 11. Your Dr. did not, he sent you for a blood test to find out if you were type 1 or 11. (That's very smart).

He then told you to cut down on carbs and take a medication that is suitable for type 11. The cut down on carbs bit would enable the remaining working cells to maintain good blood glucose levels and the medication would not harm you if you were to prove to be type 1, and would have been appropriate if you were type 11 (also smart). It would have no effect on a type 1

This is all very good, much better than going with a wrong diagnosis. The not so good bit is the phone call.

I assume that the only information given was you are not type 11 you are type 1! As the diet is controlling your BG, at the moment, all that you need to do is to continue as you are and follow the last instruction given on any medication needed. You could also contact the GP and ask what tests were performed and what the results were, and confirm that you should stop the metformin.

You mention mention that metformin is keeping your levels down, so I assume that you are testing BG at home. Should your levels rise do seek help without delay

You are allowed to panic, as long as you stop in good time. All the best.

 

[JMyrtle]

There is absolutely no reason, provided you adjust your lifestyle for the insulin producing cells you have left to stop working, that is just scare mongering.
Providing you stick to low carb, exercise and take medication if you need it nothing should change, there are type 2s controlled by diet in their 70s and 80s, just read the posts on this forum so don't panic just yet! .
Interesting what Leon's said about diabetes type, as others know I had a rather unsatisfactory consultation with a different practice nurse this time so " just for the badness of it" I asked her how she knew I was type 2 as noone had ever tested me to find out.
Apparently if I had been type 1 I would have been so since birth and it would have raised its head years ago, says it all I think.

 

[Shaza114]

Thankyou for your comments, I want some clear results to confirm exactly which type so will ask for these.

 

[KARNAK]

Hello @Shaza114 welcome to the forum.🙂You need to know what your results are so you can come back to the forum for advice. T1 or even T2 should be taken as a serious health condition, have you been referred to a HCP (Health Care Professional) at your hospital? if not why not? This condition is perfectly manageable with the correct advice, please come back to the forum with any results only too glad to help. In the mean time ask any questions you like.

 

[SB2015]

There is absolutely no reason, provided you adjust your lifestyle for the insulin producing cells you have left to stop working, that is just scare mongering.
Providing you stick to low carb, exercise and take medication if you need it nothing should change, there are type 2s controlled by diet in their 70s and 80s, just read the posts on this forum so don't panic just yet! .
Interesting what Leon's said about diabetes type, as others know I had a rather unsatisfactory consultation with a different practice nurse this time so " just for the badness of it" I asked her how she knew I was type 2 as noone had ever tested me to find out.
Apparently if I had been type 1 I would have been so since birth and it would have raised its head years ago, says it all I think.

If a person has T1 then there are antibodies destroying the beta cells which make insulin, and no amount of change of lifestyle or diet can prevent T1. Once enough beta cells are gone, there is no choice but to deliver insulin via pump or injection. You are right that some T2s can stay clear of medication by reducing their carbs and changing their lifestyle, but this will not work for T1.

 

[SB2015]

Hi @Shaza114, as @leonS said you we’re fortunate that your GP checked for T1. There are plenty of people on here who were left with meds that have no impact on T1 and not followed up either. My honeymoon period lasted a while, and during that time I was taught to make adjustments to my doses of insulin to match what I needed.

Once you have your results you should be given the opportunity to attend an education course. Worth doing. One of the benefits I found on the Dose Adjustment For Normal Eating (DAFNE) course for people with T1, was having time to talk to others about simply living with the condition.

If you have any questions just ask.

 

[leonS]

There is absolutely no reason, provided you adjust your lifestyle for the insulin producing cells you have left.

There is absolutely no reason, provided you adjust your lifestyle for the insulin producing cells you have left to stop working, that is just scare mongering.
Providing you stick to low carb, exercise and take medication if you need it nothing should change, there are type 2s controlled by diet in their 70s and 80s, just read the posts on this forum so don't panic just yet! .
Interesting what Leon's said about diabetes type, as others know I had a rather unsatisfactory consultation with a different practice nurse this time so " just for the badness of it" I asked her how she knew I was type 2 as noone had ever tested me to find out.
Apparently if I had been type 1 I would have been so since birth and it would have raised its head years ago, says it all I think.

I have no wish to monger any scares, but if the tests done confirmed type 1, I expect that if was a test for antibodies, then the eventual destruction of the cells which produce insulin is inevitable.

This is an area of research at the moment - to find a way of preventing this happening.

The good news is, that as this is late onset type 1, the destruction will most likely be slow and, as a result, the honeymoon period long.

There is a little truth (not much) in what you were told, as type 1 is an autoimmune disease the conditions for it are built in at birth. The disease does not appear in many until late in life, but it is often thought of as a disease of children.

 

[JMyrtle]

Sorry that was my mistake, I misunderstood and thought the diagnosis of type 1 had yet to be confirmed so wanted to reassure that type 2, if that is what the diagnosis eventually proved to be, can be helped by changes to diet and lifestyle.
At I said before when I challenged the nurse at the beginning of the week how she knew I was type 2 if no tests had been done to establish what type I was I was told I must be insulin resistant and therefore type 2 as type 1s makes little or no insulin themselves and have been so since birth.
I knew this is untrue but what was the point in arguing.

 

[Shaza114]

Have finally got HB1a result of 85 mmol which having looked up on this site isn't within the standard range. But at least I've got a benchmark.

 

[SB2015]

Have finally got HB1a result of 85 mmol which having looked up on this site isn't within the standard range. But at least I've got a benchmark.

Hi Shaza, as you say you now have benchmark to work from.

If Metformin is keeping your levels down that probably means that they have caught your T1 at the early stage of development which is excellent news, and will save you from developing serious problems as many do before they get diagnosed.

The Metformin will be working on your remaining beta cells, making the insulin that you have available work well enough for now.

The destruction of the beta cells will continue (as at present they have not found a way of stopping it but there is research going on about this. Not in time for us) and eventually you will need to inject the insulin you need. That is why it is important to keep a close check on things as people will lose their beta cells at different rates, and you certainly don’t want to continue t9. Have levels giving you an HbA1c of 85. I was given the target of keeping it below 58 as a T1 and preferably below 48 if possible. It is a lot to take in but it really does get to be just part of a new ‘normal’ life.

Keep in touch on the forum, and ask any questions that you have. There is plenty of experience on here of all sorts, and lots of support available.

 

[Shaza114]

Thanks for info and positive comments.