Type 2, type 1, type 2, type 1.5, type 1, type 2

[mattcps]

Hi Guys, decided to come on here to possibly get answers as i am not having much luck with the doctors. i was diagnosed october last year after being to my GP several times and without ever getting a solution decided to research my symptoms myself and it kept flagging up diabetes. I got a lend of a friends meter and tested my bloods at 21.6mmols. Contacted the out of hours doctor who referred me to hospital. At hospital i was monitored for a few hours and sent home with metaformin and a meeting arranged with the diabetic nurse. After speaking with her and a couple of weeks on the tabs i was told i was def T2.
First meeting with diabetic specialist doctor around 2 moths after above and after having blood samples taken a week before Dr. informs me that i am def T1 and must start insulin immeditaly. (my grandmother was T1) after about 15 mins of the horror stories from the Dr. ie limbs prob fall of in time, eyesight will leave you in 10 years, heart attack strok etc. i left feeling extremly down.
I collect prescription for insulin and get the pens and go to meet a specialst nurse at clinic to get instructed on how to use the pens. He looked at my blood results and says yes your def a type 1. Then asked to see my meter which i had brought with me and diary which i had been monitoring my bloods with around 8 times A day. Then told me that something wasnt right as the monitor says i cant be T1 with those results on just metaformin, prob average 7-9mmols at that time. So he then put me on glyclaside tabs along with the 2grams of metaformin per day for one week. this worked well and brought my blood average to 4-7mmols. after that week was then told i am prob LADA or T1.5.
Over the next couple of months i start to hypo regurarly as in 4-5 times per week. see another DR who tells me i must stop the glyclaslide. He remarks that the insulin must be working wonders for me because my long blood test was the same as a normal person i think it was 44, i explained i wasnt on insulin and he couldnt believe it. He said in 20 years he has never seen a case like me. It was something to do with my blood containing a certain antibody which only type1 have and that metaformin should not be fit to manage my levels.

im sorry for the long story but have tried to shorten it as much as possible. has anyone else had an experience like this before? im basically up in the air at the minute as they dont know exactly what i am or how to treat it.
Thanks
Matt

 

[grovesy]

Welcome!

 

[Ralph-YK]

Welcome. Interesting story.

 

[Northerner]

Hi Matt, welcome to the forum 🙂 Goodness, you have been from pillar to post and back again, haven't you? The bottom line to bear in mind is this: if the treatment regime you are on is working well for you then that is the main thing, and your levels will be kept under control. Diabetes is something which can throw up quite a few conumdrums at times, so it's not always as straightforward as it might appear, that is, not obviously Type 1 or Type 2. This can make it very difficult for the medics to classify you.

Whilst it's something you need to be aware of, the scare stories of limbs, eyes, kidneys etc. are far from inevitable with the knowledge and treatments available these days.

It sounds like what may be happening is that you lost some beta cell function (the beta cells in your pancreas produce insulin), probably due to an autoimmune reaction (hence the antibodies detected), but you retained a large proportion of your function. The gliclazide will have encouraged your pancreas to produce more insulin, hence the hypos. However, it may be that you are a slow-onset Type 1, given your family history and presence of antibodies (also sometimes called LADA - Latent Autoimmune Diabetes in Adulthood - or 'Type 1.5'). Currently, you are producing sufficient insulin to cover your body's requirements, although your levels are slightly elevated. Have you also made any changes to your diet since the original diagnosis e.g. reduced carbs? If so, this might also be helping with things. In this scenario it's quite difficult to differentiate between Type 1.5 and Type 2. How long had you experienced symptoms prior to getting your original diagnosis?

How long your pancreas is able to support you is impossible to say I'm afraid, but as I said at the beginning the main thing is that you are receiving treatment which works for you. Hopefully, careful monitoring will show if and when this needs modifying in the future.

I'm a bit weird myself! I was diagnosed 8 years ago suffering from DKA (Diabetic Ketoacidosis) and a blood level of 38 mmol/l - a classic sign of Type 1. I was put on insulin, a slow-acting 'basal' insulin and a fast-acting 'bolus' insulin for meals. However, over the next 4 years I gradually found myself having to reduce my basal insulin - eventually reducing it to zero! This indicates that I must still be producing some insulin, 8 years since diagnosis - I haven't needed the basal insulin for over 4 years now, but I still need insulin with my meals. There is no category for someone like me, although I have encountered one or two others in a similar situation, but as long as my treatment works (and it works very well) I'm not overly concerned.

So, it may take a long time before it becomes apparent for you what is going on. The good news is that, although they appear confused, the medics are trying their best to get you on an appropriate medication regime for your needs - this is often not the case and people sometimes have big battles over this.

 

[mattcps]

Hi Northerner, thanks for the detailed reply with you experience! after my original diagnosis my missus put me on a strict diet after about a week of her doing some major research herself on it. i quickly lost around 2 stone weight from around 15.5 stone to 13.5. since then i have relaxed it a little though and am around 14.5 stone with a well balanced diet but still good to myself. as the doctors have said then it would appear that its just gonna be a waiting game and play it out and see what happens over time.
another point i would like to ask, is everyones immune system screwed because of it as since the start of this year i have had to take off work at least 6 times and i never used to get ill. also its my own company so being sick is a major setback. recently i have also been told that i am anemic as in within the past 3 weeks and have been put on a course of folate tablets for the next 3 months. do you think there could be a connection or has anyone else had this experience before?
ps. Forgot to say i experienced the symptoms for around 2 months before hospital diagnosis that were, goin to toilet in middle of night, fatigue, thirsy all the time, male thrush
Thanks Matt

 

[Northerner]

Hi Northerner, thanks for the detailed reply with you experience! after my original diagnosis my missus put me on a strict diet after about a week of her doing some major research herself on it. i quickly lost around 2 stone weight from around 15.5 stone to 13.5. since then i have relaxed it a little though and am around 14.5 stone with a well balanced diet but still good to myself. as the doctors have said then it would appear that its just gonna be a waiting game and play it out and see what happens over time.
another point i would like to ask, is everyones immune system screwed because of it as since the start of this year i have had to take off work at least 6 times and i never used to get ill. also its my own company so being sick is a major setback. recently i have also been told that i am anemic as in within the past 3 weeks and have been put on a course of folate tablets for the next 3 months. do you think there could be a connection or has anyone else had this experience before?
ps. Forgot to say i experienced the symptoms for around 2 months before hospital diagnosis that were, goin to toilet in middle of night, fatigue, thirsy all the time, male thrush
Thanks Matt

Higher than normal blood sugar levels can encourage infections and make those we might normally shrug off harder to overcome, so that might hbe a factor - a lot of people find this, with hindsight. I actually had a problem with a tooth infection that flared up 10 years after the tooth had been root-filled, about three months prior to my diagnosis! 😱 It's also possible that the illnesses came first, placing extra demands on your pancreas and raising your levels. As you can tell, it's not simple, is it? 🙄

It sounds to me like you have caught things early. Again, it's impossible to be precise, but with Type 2 the symptoms may appear very gradually over many, many months or years. My symptoms were there, without me doing anything about them, for about 18 months, then I caught a virus which tipped me over the edge.

Have you had a C-peptide test done, do you know? This test measures the amount of insulin you are producing and can be another method of pinning down what is happening with you - Type 2 is characterised by insulin-resistance, so often the pancreas will be producing a lot more insulin than a non-diabetic person, whereas Type 1.5/LADA would likely show a reduced insulin production compared to non-diabetic people. I'm in the latter category as I do not exhibit any characteristics of insulin resistance.

 

[Stitch147]

Hi Matt and welcome to the forum. I was initially diagnosed as type 2 and put on metformin and nothing change. i went back and saw a different gp and he realised that I was "a bit odd" and I have since been diagnosed as MODY. I am still struggling to get my levels into single figures and have another appointment next week to discuss the next steps.

 

[mattcps]

Higher than normal blood sugar levels can encourage infections and make those we might normally shrug off harder to overcome, so that might hbe a factor - a lot of people find this, with hindsight. I actually had a problem with a tooth infection that flared up 10 years after the tooth had been root-filled, about three months prior to my diagnosis! 😱 It's also possible that the illnesses came first, placing extra demands on your pancreas and raising your levels. As you can tell, it's not simple, is it? 🙄

It sounds to me like you have caught things early. Again, it's impossible to be precise, but with Type 2 the symptoms may appear very gradually over many, many months or years. My symptoms were there, without me doing anything about them, for about 18 months, then I caught a virus which tipped me over the edge.

Have you had a C-peptide test done, do you know? This test measures the amount of insulin you are producing and can be another method of pinning down what is happening with you - Type 2 is characterised by insulin-resistance, so often the pancreas will be producing a lot more insulin than a non-diabetic person, whereas Type 1.5/LADA would likely show a reduced insulin production compared to non-diabetic people. I'm in the latter category as I do not exhibit any characteristics of insulin resistance.

I honestly dont know the answer to that about the c peptide. they have done loads of tests but i cant specifically remember that one.
Going by your bottom statment would that mean i am leaning more like T2 Then as at the minute metaformin appears to be working?

 

[mattcps]

Hi Matt and welcome to the forum. I was initially diagnosed as type 2 and put on metformin and nothing change. i went back and saw a different gp and he realised that I was "a bit odd" and I have since been diagnosed as MODY. I am still struggling to get my levels into single figures and have another appointment next week to discuss the next steps.

Hi Stitch, now that you mention it i think i have also had a Dr mention MODY to me aswell somewhere during this whole process lol. I havent actually had a concrete label as anything as of yet though as None of the professionals i have seen have been sure what to say

 

[Northerner]

I honestly dont know the answer to that about the c peptide. they have done loads of tests but i cant specifically remember that one.
Going by your bottom statment would that mean i am leaning more like T2 Then as at the minute metaformin appears to be working?

I think it's too early to say. Metformin works partly by reducing the absorption of carbohydrate by the gut and inhibits glucose release from the liver (don't quote me on that, I'm not a doctor!) so it doesn't reduce insulin resistance per se, it just gives the body less to cope with. Apart from wind, that is! 😱 😉

 

[Northerner]

Hi Stitch, now that you mention it i think i have also had a Dr mention MODY to me aswell somewhere during this whole process lol. I havent actually had a concrete label as anything as of yet though as None of the professionals i have seen have been sure what to say

Family history may play a part in this - you can be tested for a particular gene abnormality. Again, it's a type of diabetes that can otherwise be hard to pin down and with no straightforward treatment - often a MODY can manage on oral medication, but can progress to needing insulin ( a former member here followed this route and is now a DSN on an insulin pump!).

 

[HOBIE]

Welcome to the forum. I bet your head is spinning ! Just so you know T1 your pancreas does not wok T2 it my work 30% or 90% that's for Nhs to find out. If you have or any person has a bucket full of sugar your bg will be high. If you have just done a marathon it should be low. Good luck finding out 🙂

 

[trophywench]

Hiya - now I'm going to throw another spanner in your works. Sorry!

When people are anaemic - the HbA1c test ifs not at ALL reliable (not sure about glucometer readings, though) Instead - a Fructosamine test is what they are supposed to use. Google that - you'll see it explained properly.

 

[Mini-Vicki]

Hey Matt,
Welcome to the forum! It's a brilliant place for advice and support. Everyone is great here 🙂

I'm a LADA. I was diagnosed with type 2 when I was 24, and initially diet was enough to control my BGs, then I needed metformin, then added in gliclazide and another med called stitagliptin. Eventually I required insulin, and I was found to actually be LADA and not type 2. The reason I didn't need insulin initially was my pancreas was slowly losing the ability to produce insulin, rather than the sudden, dramatic loss of function many type 1s experience.

As Northener has said, as long as you are on the correct treatment, the label doesn't particularly matter right now. As we try to understand diabetes more, it's becoming clear that it is more of a spectrum, rather than a clear cut 'type 1 or 2', and diabetes rarely acts the same for two people.
And it would definitely be worth having your HbA1c tested again once your anaemia is rectified.

Also, try not to let the list of complications scare you too much! Whilst it is important to look after yourself, as it is for everyone, it is also possible to live a normal, full life! My dad is a type 1, he's been diabetic 52 years this year. He has yet to have any limbs fall off, can still see perfectly well, still works full time, and drives a car!

 

[Bloden]

Hi there and welcome, Mattcps.🙂 Sorry to hear you're having so much trouble getting a firm diagnosis. Don't feel you're alone...there's lots of lovely people here to help and support you. 🙂

 

[mattcps]

Thanks for all the advice and replies guys really appreciated. after a good spell the last little while with blood readings i have found myself struggling this last couple of days with my bloods being slightly higher than normal in the morning and afternoon with an average of around 10-13mmols. and my diet or tablet intake has not changed. it is leaving me feeling very lethargic. lets hope they will get back on track soon!

 

[Ljc]

Hi. I wonder if you could be brewing something. Some of us notice our BGs go out of kilter a few days before an infection shows itself.
If they don't come back on track very soon it would be best to contact one of your diabetic team.