Recently diagnosed with 'slow-evolving' type 1

[francescakate]

Hi everyone

I've finally got my diabetes diagnosis after months of waiting and it's a shock. I had gestational diabetes last year, gave birth in Jan 2021 and my HBAC1 in April was normal. By October I wasn't feeling very well with hand foot and mouth (thanks to the little one) and tested my blood sugars and they were all late teens and my HBAC1 shot to 69.

Months of tests later, I expected to get a type 2 diagnosis given my gestational diabetes history but my doctor pushed for type 1 testing due to me being a healthy weight with no risk factors. I waited 2 months for the test results and the hospital confirmed on Christmas Eve that I have slow-evolving type 1, but not type 1.5 because I'm 28.

Before Christmas my levels were around 6 in the morning, 9 in the evening but then I got COVID and since they've been above 10 even for fasting sugars. I finally got my insulin prescribed last week and I'm on 6 units of Levemir in the morning, 1g of Metformin x2 a day but my levels still aren't great (around 7-8 in the morning and the rest of my readings throughout the day are 10+) except for my before bed ones.

For anyone else recently diagnosed, have you found your diabetes team to be... lacking? They've all been lovely but they very much seem to be relying on my previous knowledge of GD (which is a whole different beast) - I had to Google what Type 1 was and what my future held. They hadn't even told me how to inject insulin, thankfully I had to do so for a few weeks during pregnancy over a year ago and remembered after watching a few YouTube videos.

I've not had any face-to-face appointments, just one telephone call with the consultant who said they'd call me again in 4 months. My numbers are still too high so I'm going to call the nurses this week but I'm not the kind of person who is comfortable ringing up constantly for help. I just feel that my numbers are growing fast, my insulin isn't enough and they've got me on the back-burner while they (rightfully) deal with more urgent cases.

 

[Inka]

Hi @bvnshee Who do you mean by your “diabetes team”? If you mean the diabetes ‘expert’ nurse at your GP surgery, then yes I’ve found mine extremely lacking. However my hospital team are great.

I think you sound like a pretty normal Type 1 🙂 Type 1 does come on more slowly in adults and something usually reveals it starting - eg pregnancy. I know a number of ladies mistakenly diagnosed with GD when they actually had Type 1. Type 1 is caused by an auto-immune attack on our beta cells, but the remaining cells struggle on as long as they can and it’s not till we’re down to about 20% of our beta cells that we can no longer control our blood sugar. So unknown to you, the auto-immune attack had probably started a while ago.

I don’t understand why you’re on Metformin. You should be on Levemir (usually twice a day) and a fast-acting bolus (meal) insulin. You’re not the first person diagnosed with Type 1 as an adult who has received tardy treatment (in my non-medical opinion). I urge you to speak to the hospital DSNs and get some advice. Unfortunately, we sometimes have to be a bit pushy to get results.

 

[francescakate]

Hi @bvnshee Who do you mean by your “diabetes team”? If you mean the diabetes ‘expert’ nurse at your GP surgery, then yes I’ve found mine extremely lacking. However my hospital team are great.

I think you sound like a pretty normal Type 1 🙂 Type 1 does come on more slowly in adults and something usually reveals it starting - eg pregnancy. I know a number of ladies mistakenly diagnosed with GD when they actually had Type 1. Type 1 is caused by an auto-immune attack on our beta cells, but the remaining cells struggle on as long as they can and it’s not till we’re down to about 20% of our beta cells that we can no longer control our blood sugar. So unknown to you, the auto-immune attack had probably started a while ago.

I don’t understand why you’re on Metformin. You should be on Levemir (usually twice a day) and a fast-acting bolus (meal) insulin. You’re not the first person diagnosed with Type 1 as an adult who has received tardy treatment (in my non-medical opinion). I urge you to speak to the hospital DSNs and get some advice. Unfortunately, we sometimes have to be a bit pushy to get results.

Thank you, I find it reassuring to hear that this isn't too uncommon for Type 1! I feel like all the Type 1 stories I hear are where people are admitted to hospital and then diagnosed, I guess I was lucky to catch it early.

By my diabetes team I mean the hospital consultant and nurse I've spoken to. My GP rang to tell me that I had Type 1 and has left it with the hospital, I don't even know if my GP surgery has an expert nurse.

I was put on Metformin back when they didn't know what type it was. When the hospital nurse rang on Christmas Eve to speak to me after T1 was confirmed, she said I didn't really need to be on it but to keep taking it anyway. Then when I spoke with the consultant for the first time this week, he upped me from 1g a day to 2g and upped my Levemir from 3 units to 6 units. He told me I probably wouldn't need Levemir at night for a while or fast acting insulin (but I do have Novorapid in my fridge in case of emergencies).

There's two hospitals near me and the one I seem to have been put under the care of is the one that is furthest away. I'm tempted to see if the other hospital can take me on instead because I had a good experience with them during pregnancy.

 

[SB2015]

Welcome to the forum @bvnshee, from another late starter with T1.

As you now have the correct diagnosis I would ask for a referral to the hospital specialist team. It can take a bit of time to get insulin doses sorted and they have the expire I need to help with that, whilst the Practice team will be far more used to dealing with T2 medications.

Like @Inka I am unclear why you are taking met for in. Do you know why they have kept you on that? As you are T1 the antibodies, which they have picked up with the tests, will have been having a ball destroying your beta cells. As you are struggling to get your levels where you want them, it is likely that you are already need a quick acting insulin to deal with glucose from the carbs you are eating. Some get away without this initially as they enough beta cells working to give enough insulin for the carbs they eat, but eventually these remaining beta cells are usually also destroyed and so the need for meal time insulin increases.

It is not being pushy to get a referral To a specialist team. There is a lot to take on board at the start and they are the ones to help with that as they draw on their knowledge of treating others with T1. In a GP practice they see very few of us.

let us know how you get on.

 

[Inka]

At least you’ve got the Novorapid. You’re not alone in this treatment. Certain people seem to get weirdly slow treatment from their team and it often matches what you’re getting - that is, being on a raised dose of Levemir to try to cover food too when that’s not what it’s for, and a bizarre reluctance to prescribe the needed bolus/meal insulin. This can drag on for a while and cause unnecessary stress and concern.

Even if a Type 1 only needs tiny amounts of insulin, it’s generally better to have, say, 3 units of Levemir and 1 unit of Novorapid per meal rather than 6 units of Levemir. Same amount of insulin but more appropriately used - ie for background and for meals.

If you’re not happy with your team, do look at transferring hospitals. It’s really important to get a good, supportive team. The DSN you spoke to sounded more switched on frankly. You don’t need Metformin. It won’t do you any harm but it’s not necessary. You need the recommended two types of insulin at the correct doses.

 

[trophywench]

Well sorry - if YOU don't make your health a priority, nobody else will! Were it not for you me and other PWD needing help, how would D clinic personnel ever be employed in the first place?

Ring them and say 'Help!!' asap.

 

[SB2015]

There's two hospitals near me and the one I seem to have been put under the care of is the one that is furthest away. I'm tempted to see if the other hospital can take me on instead because I had a good experience with them during pregnancy

I would say Just Do It.
If you are not happy with the help you are getting ask for a transfer.
They will be an important part of your care, especially in the early days.
I am still confused why they are suggesting to continue with Metformin.

 

[EmmaL76]

I’m also confused about the metformin. Do you know exactly what your antibody results were? Do your team still have any doubt about your type? Yes I’ve found hospital and doctors very lacking. Diagnosed sept 20’ type currently unknown. No hba1c, only a couple of calls from a dietician no face to face, my review was due last April. Had eyes checked regularly though xx

 

[francescakate]

I’m also confused about the metformin. Do you know exactly what your antibody results were? Do your team still have any doubt about your type? Yes I’ve found hospital and doctors very lacking. Diagnosed sept 20’ type currently unknown. No hba1c, only a couple of calls from a dietician no face to face, my review was due last April. Had eyes checked regularly though xx

They're certain it's Type 1, they've said my results were significant. From looking at my NHS app they were:
GAD >2000 u/mL, Islet antigen 235 iu/mL, ZR TR 8 >500 u/ml
Which seem to all be massively over the normal ranges also noted.

No idea why I'm on Metformin, they've even upped it from 1g to 2g this week so currently feeling nauseous with tummy pain. I'm definitely going to raise it next time I speak with them because I'm under the impression metformin helps with insulin resistance so eventually when I stop making insulin it's useless?

Sorry to hear you've also not been getting great care. I wonder if it's a COVID thing or whether this is just the norm. Xx

 

[francescakate]

Welcome to the forum @bvnshee, from another late starter with T1.

As you now have the correct diagnosis I would ask for a referral to the hospital specialist team. It can take a bit of time to get insulin doses sorted and they have the expire I need to help with that, whilst the Practice team will be far more used to dealing with T2 medications.

Like @Inka I am unclear why you are taking met for in. Do you know why they have kept you on that? As you are T1 the antibodies, which they have picked up with the tests, will have been having a ball destroying your beta cells. As you are struggling to get your levels where you want them, it is likely that you are already need a quick acting insulin to deal with glucose from the carbs you are eating. Some get away without this initially as they enough beta cells working to give enough insulin for the carbs they eat, but eventually these remaining beta cells are usually also destroyed and so the need for meal time insulin increases.

It is not being pushy to get a referral To a specialist team. There is a lot to take on board at the start and they are the ones to help with that as they draw on their knowledge of treating others with T1. In a GP practice they see very few of us.

let us know how you get on.

Thank you! All of my care has actually been through the hospital team, the only input my GP had was ordering the tests.

I've got no idea why I'm on Metformin to be honest. They put me on it before I had a concrete diagnosis, then asked me if I was feeling unwell on it and I said no and then when I had my first call with the consultant he upped it again and now I'm feeling quite sick while I adjust.

I was thinking that about the fast acting insulin. My levels mid day before lunch and evening meal are the worst and I think it's because I'm not tolerating my breakfast/lunch well.

 

[francescakate]

At least you’ve got the Novorapid. You’re not alone in this treatment. Certain people seem to get weirdly slow treatment from their team and it often matches what you’re getting - that is, being on a raised dose of Levemir to try to cover food too when that’s not what it’s for, and a bizarre reluctance to prescribe the needed bolus/meal insulin. This can drag on for a while and cause unnecessary stress and concern.

Even if a Type 1 only needs tiny amounts of insulin, it’s generally better to have, say, 3 units of Levemir and 1 unit of Novorapid per meal rather than 6 units of Levemir. Same amount of insulin but more appropriately used - ie for background and for meals.

If you’re not happy with your team, do look at transferring hospitals. It’s really important to get a good, supportive team. The DSN you spoke to sounded more switched on frankly. You don’t need Metformin. It won’t do you any harm but it’s not necessary. You need the recommended two types of insulin at the correct doses.

Thank you! I thought that about the insulin too because that's how we did it when I was pregnant with GD. The difference in care when I compare my GD diagnosis and Type 1 diagnosis is honestly a bit shocking but I imagine the GD team are more switched on because the baby is at risk.

I've emailed one of the teams at the hospital to see how I go about switching - even if my current hospital were great, it's a £30 taxi ride there and my nearest hospital is 10 minutes on the bus.

 

[EmmaL76]

They're certain it's Type 1, they've said my results were significant. From looking at my NHS app they were:
GAD >2000 u/mL, Islet antigen 235 iu/mL, ZR TR 8 >500 u/ml
Which seem to all be massively over the normal ranges also noted.

No idea why I'm on Metformin, they've even upped it from 1g to 2g this week so currently feeling nauseous with tummy pain. I'm definitely going to raise it next time I speak with them because I'm under the impression metformin helps with insulin resistance so eventually when I stop making insulin it's useless?

Sorry to hear you've also not been getting great care. I wonder if it's a COVID thing or whether this is just the norm. Xx

Oh wow yes, there really is little doubt about that diagnosis. I know some type 1’s can have insulin resistance also… did you do a c peptide ? That the only explanation I can think of. If they are making you feel poorly then I really would give them a call (for what it’s worth) and see it they are necessary as you have enough on your plate without unwanted / unneeded side effects xx

 

[francescakate]

Oh wow yes, there really is little doubt about that diagnosis. I know some type 1’s can have insulin resistance also… did you do a c peptide ? That the only explanation I can think of. If they are making you feel poorly then I really would give them a call (for what it’s worth) and see it they are necessary as you have enough on your plate without unwanted / unneeded side effects xx

Hmm no mention of a C peptide test on my results. Really I should have questioned it when my consultant raised my dose. I'd asked him if I needed to be on it now I'm confirmed T1 and he ended up increasing it. I was expecting to be told to come off it so I think I was too surprised to say anything. I'm definitely going to bring it up xx

 

[EmmaL76]

Well the c peptide will show how good your insulin production is and whether it’s possible you are resistant. I would defo bring it up… they may have a reason. If your anything like me with doctors,I just agree to everything, don’t ask any questions can’t wait to get out then get home and think what was all that about then lol

 

[Inka]

I was thinking that about the fast acting insulin. My levels mid day before lunch and evening meal are the worst and I think it's because I'm not tolerating my breakfast/lunch well.

If I was you I’d be eyeing that Novorapid after getting my basal dose right (you’d probably need a fair bit less if you added Novorapid). Post-pregnancy insulin needs will be significantly less than you needed in the latter half of pregnancy. Do you have a half unit pen for the Novorapid? If not, do get one. I’d also be dumping the Metformin. It’s almost like they’re still treating you as a Type 2 even though you’re clearly Type 1. It makes me very annoyed because this happens far, far too often.

I’d be swapping hospitals ASAP. I now only visit mine annually so although it’s a bit of a hike, it’s not very often. I speak to the DSNs by phone. It’s definitely worth it for your health and mental peace. Type 1 is hard enough without people messing you around or dragging their heels.