Young, type 2 and on insulin. Confusion! Please help!

[boxy_robot]

Hello all!
This is my first post and really I’m just wanting to share my story, see if there is anyone on here who has a similar story to mine or has any ideas which might help. It’s a bit of a story but I’ll try and keep it shortish!
I’m 37 now but was 32 when I moved across the country and randomly found out I had type 2 (or so they say) diabetes. I was at my new GP for a different reason when he looked at blood test results and said “oh.. did you know you are diabetic?” (no I didn’t!). I was promptly put on metformin and that was that for a while. A few years before this I also found out I had high blood pressure (when I was 28) again by surprise when I went for a pre-op assessment. I also have Ehlers-danlos syndrome, Fibro, ADHD and anxiety disorder. Never had any kids or pregnancies. When I was about 19 i had a scan which showed I had PCOS (although apparently now I don’t!). I have never been slim but i only seem to carry extra weight around my abdomen, everywhere else being sort of proportionate I guess?
I was put on Dapagliflozin a couple of years ago which helped me lose weight and also tried weekly semaglutide injections twice but they made me extremely unwell so had to stop them.
Over the past few years I have simply felt exhausted, randomly vomiting and just sort of lethargic and generally unwell. I’ve had stressful events happen which affected my mental health but not enough to be hospitalised or anything.
In January this year (2023) I was unwell again (randomly vomiting, very exhausted, etc) but just went to bed thinking I was just ill again like the last few times. At about 2 am I woke up feeling dreadful, vomiting, very thirsty, peeing a lot, heart going about 145bpm and felt groggy, dizzy and couldn’t seem to catch my breath. I woke up my partner who looked online for 111 advice. An ambulance was called and they weren’t sure what was wrong.. but took me to hospital. No one was very interested until they did the first blood test which showed I was in diabetic keto acidosis, although with vaguely normal blood sugar (Euglycaemic DKA). Suddenly I was rushed to resus where the endocrinologist told me I was ‘Big Sick’ (I’ve worked in the ambulance service so I know what that means coming from a doctor) from there I went to ICU for a bit and when well enough, I went to a ward.
Apparently the EDKA was caused a combination of me being unwell, severely dehydrated and taking the drug dapagliflozin (which I should have apparently stopped taking when unwell but didn’t know). It created a perfect storm which, left untreated would have put me into a coma and even could have killed me.
Whilst in hospital they stopped the dapagliflozin and started me on daily Lantus Insulin and gave me a blood and ketone monitoring machine. I carried on taking metformin.
The doctors told me they’d do some extra tests and bring me back in as an outpatient to follow up, which I was happy with because I’m a 37 year old with seemingly type 2 diabetes and I am already on insulin….this isn’t good. They warned me the insulin would probably make me gain weight which made me a tad miserable but I had no choice really and am already overweight.. This scared me because I wasn’t sure what my future was going to be like.
Fast forward to February. I reported to my GP that my blood pressure had been quite high so he brought me in and checked it. It was about 215/118 at that appointment so he called the hospital and sent me in. I was admitted for about 5 days and just felt a bit of a fraud, although I could feel my heartbeat all over my body which was very odd. My chest ached and I had a headache but that’s about it. I went home on very strong antihypertensive drugs.
Over the next few months I just got on with checking blood sugars, taking insulin etc.
I stayed in touch with the diabetes centre nurses who were very helpful, especially when I was unwell and panicking about ketones. I was waiting for the follow up appointment with the endocrinologist and eventually got one which was last week (August).
The endocrinologist was hard to read but didn’t seem very engaged, though I tried not to read I to it too much- Drs have a lot on their plates!. I had lots of questions- I didn’t really understand why all of this was happening in my body- the diabetes getting worse and problems with blood pressure, feeling exhausted still etc… Now I am the first to say I’m not the fittest person in the world.. I eat carbs but my diet certainly isn’t awful (cook from scratch mostly). I was / am just confused as to why things were so severe. Is it all my fault? Am I just fat? Am I now on insulin forever, age 37? Is it connected to my blood pressure? Do I have a different type of diabetes altogether? Or is there something else going on? I just don’t know. And any amount of googling just leaves me more confused!
He said he needed more information about my blood sugars so he went and got one of the nurses who fitted me with a Libre 2 and connected it to their service so they could see what my levels were like.
I have had it on for 4 days now and it keeps alerting me to high glucose levels, at one point my blood sugar read 19.4. After 2 days the diabetes nurse rang and told me to increase my insulin by 10% and they’ll be back in touch again Monday (tomorrow).
So anyway sorry for the huuuuuuge post but if ANYone has any ideas, input, advice or has had a similar journey in any way (although I know it’s quite unusual!) or just wants to reply, I would be so grateful!
I’m particularly keen to find out if there’s anyone else an apparent type 2, fairly young(ish!) and already on insulin or are trying to find out if there’s something else happening in their bodies.
Thank you so much xx

 

[MrsA2]

Hi @boxy_robot
Just to say welcome. Your story is way above my level of knowledge but being a Sunday night you might not get many quick responses so I just wanted to say welcome and I'm sure others will be along over the next few days

 

[EllieM]

Hi @boxy_robot and welcome to the forums.

Yes, we do have some T2 members as young as you but I really hope that your doctor(s) have eliminated other forms of diabetes to check out what is happening, because you have progressed to insulin quite early in the process.

If I were you I'd ask on Monday as to whether they've done the tests to rule out other types, T1/LADA (LADA is just T1 developed when older) and even MODY (suspect this is unlikely but I freely admit I know very little about it apart from the fact that you have to do genetic testing to diagnose and MODY folk tend to have lots of family members with diabetes) but given you are an unusual case they should at least do cpeptide and GAD to rule out T1. Though as a T1 you'd still be on insulin the diabetic tech provided to them is better (automatic supply of libre) and also the disease is different. (T1s end up producing no insulin so they tend to be put on more flexible insulin regimes earlier). I would hope/expect that they have done these tests already but a lot of T1s get misdiagnosed as T2 for the first couple of years.

Anyway,it sounds like they are finally taking your condition seriously, and you've got attention from a hospital clinic, which is progress in my opinion.

As I'm T1 I can't say much about the T2 aspect but I want to assure you that insulin is not the end of the world if it turns out you have to go on taking it. . (I've been on it for 53 years.)

Is it all my fault?

Absolutely 100% not. No victim blaming here.

Try not to worry about high readings from the libre. Different people need dramatically different quantities of insulin and they have to start you low and increase because too much insulin is much more dangerous than too little (in the short term anyway). Hopefully your team talked to you about hypoglycemia when you first went on insulin? It's important to always have access to something sugary so you can treat a hypo if it happens.

Anyway, let me stop this wall of text and wish you luck. Hopefully some T2s will be along soon.

 

[JoKalsbeek]

Hello all!

Thank you so much xx

Oof, that's a lot to be dealing with...! No idea what type of diabetes you could have other than T2, (being likely with PCOS. Though how that suddely vanishes without a very low carb diet is a mystery to me) as there are many and we can't tell without further testing, which thankfully is being done, but there's a few things to consider.

You're only mentioning medication for the T2, hypertension and whatnot... Nothing for the EDs, possibly for PoTS if you have it? One of my old classmates has it, and her stash of medication would put a pharmacy to shame. Any anti-inflammatory steroids in there? Because they could up blood glucose, as can constant inflammations going on. Oxy on the other hand, could make you go lower. They're necessary drugs, so not saying to ditch anything, but it's something to take into consideration with your treatment. Some people can't go the diet-only route because they need anti-inflammatories for instance, so they need some other medication besides to keep blood sugars in a decent range. It's not failing, it's just, you know, needs must.

And it doesn't matter whether your carbs are coming from a healthy meal. They're carbs, you can't process those properly. Whether they're from the McD's or an organic Farmer's Market, doesn't matter. It's a carb, it'll up your blood sugars. (I know, it sucks). Mind you, if you're upping your insulin, don't just go cutting carbs drastically, because you'll face-plant with a hypo. https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html might help get a grip on things some, but do it SLOWLY and keep in mind that your meds might need adjusting as well.... Though at this point I'm not too sure altering your diet would be the way to go: Wait on all your results first and go from there, altering things now may skew results.

This month I found out, at 44 years old, that certain traits I always thought were associated with my borderline, are actually ADHD... One of which is googling anything and everything, so i do completely understand the need! Now, there's a whole lot of sites about diabetes and how to treat it with or without medication, which tests to do, what lifestyle to adhere to and whatnot. It's a rabbit hole. If you do a deep dive though, keep the previous paragraph in mind: don't change anything radically right now, but take notes as if your life depends on it. Things to discuss with the endo, things to compare your CGM results to etc etc. You're not going to be able to not google, so if you do, make sure it is useful to you rather than solely overwhelming and anxiety-inducing. Also, if you see anything you absolutely want to try, test your heart out to see what it does. Never ever fly blind.

You can do this. It's a lot, but you can.
Hugs,
Jo

 

[boxy_robot]

Hi @boxy_robot
Just to say welcome. Your story is way above my level of knowledge but being a Sunday night you might not get many quick responses so I just wanted to say welcome and I'm sure others will be along over the next few days

Thank you so much- this forum is a godsend!! Xx

 

[boxy_robot]

Hi @boxy_robot and welcome to the forums.

Yes, we do have some T2 members as young as you but I really hope that your doctor(s) have eliminated other forms of diabetes to check out what is happening, because you have progressed to insulin quite early in the process.

If I were you I'd ask on Monday as to whether they've done the tests to rule out other types, T1/LADA (LADA is just T1 developed when older) and even MODY (suspect this is unlikely but I freely admit I know very little about it apart from the fact that you have to do genetic testing to diagnose and MODY folk tend to have lots of family members with diabetes) but given you are an unusual case they should at least do cpeptide and GAD to rule out T1. Though as a T1 you'd still be on insulin the diabetic tech provided to them is better (automatic supply of libre) and also the disease is different. (T1s end up producing no insulin so they tend to be put on more flexible insulin regimes earlier). I would hope/expect that they have done these tests already but a lot of T1s get misdiagnosed as T2 for the first couple of years.

Anyway,it sounds like they are finally taking your condition seriously, and you've got attention from a hospital clinic, which is progress in my opinion.

As I'm T1 I can't say much about the T2 aspect but I want to assure you that insulin is not the end of the world if it turns out you have to go on taking it. . (I've been on it for 53 years.)


Absolutely 100% not. No victim blaming here.

Try not to worry about high readings from the libre. Different people need dramatically different quantities of insulin and they have to start you low and increase because too much insulin is much more dangerous than too little (in the short term anyway). Hopefully your team talked to you about hypoglycemia when you first went on insulin? It's important to always have access to something sugary so you can treat a hypo if it happens.

Anyway, let me stop this wall of text and wish you luck. Hopefully some T2s will be along soon.

Wow thank you so much for this answer!
Adhd makes everything a bit harder, especially because other people think you’re just lazy and have control over your behaviour!
When I was in ICU in January they did mention doing other tests but they were take blood constantly every hour anyway so I’m not sure. I wasn’t told a lot and actually it’s taken quite a lot to even be sure I was referred to the endocrinologist. I think the diabetes nurses had to do the referral again because whenever I asked it wasn’t in the system… It’s been ever so confusing! There wasn’t anything in my discharge notes, blood results wise. When I asked the endo about extra tests he certainly didn’t mention any results on my file and said they wouldn’t do extra tests without first having more information about what my blood sugar was doing (hence the Libre 2, although he didn’t seem all that keen to do that either really…). He said the blood sugar results I’d written down didn’t tally with my Hba1c and I don’t know- he just didn’t seem to believe what I told him.. it was a real struggle.
I do often get this sort of ‘look’ from health professionals sometimes and I’m quite sure it’s because of my appearance. I’m androgynous, don’t wear makeup and tend to wear men’s shorts and a T-shirt because I have sensory issues with clothing (I am diagnosed with autism too, yay!) and I just wear what is comfortable. I also have tattoos and generally my hair is a bit scruffy regardless of what I do to it.
Anyway so it’s been a real uphill struggle to even get to the endocrinologist and when I was there I was almost crying because I’ve been waiting and worrying and feeling dreadful and was hoping for a bit more… I dont know… support? It’s just been such a confusing and disheartening time waiting for this appointment.
I don’t mean to criticise, especially because the diabetes nurses are, without doubt, AMAZING!! But when you need the endo’s input and you really have to beg for it, it’s hard. And difficult not to take personally.
Whoops sorry… off on a tangent I go!

I will answer your other questions a bit later but once again thank you for your help and expertise!

 

[MrsA2]

I so understand the "diagnosing or judging on appearance" annoyances.

When I was first tested for diabetes, my hba1c blood test was before I went on holiday. Chatting with another holiday maker he was a recently retired endocrinologist and talk turned to diabetes. He said with my bodyshape I definitely wasn't diabetic and then proceeded to discuss all the other body shapes around the pool, saying who would and who wouldn't develop it, in some cases mentioning their diet.
On my return I got my results and yes I was T2!
to this day I wonder how many of the others he was wrong on as well. Only positive was that he was already retired.

 

[boxy_robot]

I so understand the "diagnosing or judging on appearance" annoyances.

When I was first tested for diabetes, my hba1c blood test was before I went on holiday. Chatting with another holiday maker he was a recently retired endocrinologist and talk turned to diabetes. He said with my bodyshape I definitely wasn't diabetic and then proceeded to discuss all the other body shapes around the pool, saying who would and who wouldn't develop it, in some cases mentioning their diet.
On my return I got my results and yes I was T2!
to this day I wonder how many of the others he was wrong on as well. Only positive was that he was already retired.

That’s really interesting!
(Yes I’m glad he’s retired too!)
You’d hope going to an endocrinologist might mean they’d be more understanding but I guess it depends on lots of other things. My uncle is actually a consultant endocrinologist but he’s in paediatrics so he deals a lot more with growth problems etc….otherwise I’d just go to him instead!

 

[boxy_robot]

Oof, that's a lot to be dealing with...! No idea what type of diabetes you could have other than T2, (being likely with PCOS. Though how that suddely vanishes without a very low carb diet is a mystery to me) as there are many and we can't tell without further testing, which thankfully is being done, but there's a few things to consider.

You're only mentioning medication for the T2, hypertension and whatnot... Nothing for the EDs, possibly for PoTS if you have it? One of my old classmates has it, and her stash of medication would put a pharmacy to shame. Any anti-inflammatory steroids in there? Because they could up blood glucose, as can constant inflammations going on. Oxy on the other hand, could make you go lower. They're necessary drugs, so not saying to ditch anything, but it's something to take into consideration with your treatment. Some people can't go the diet-only route because they need anti-inflammatories for instance, so they need some other medication besides to keep blood sugars in a decent range. It's not failing, it's just, you know, needs must.

And it doesn't matter whether your carbs are coming from a healthy meal. They're carbs, you can't process those properly. Whether they're from the McD's or an organic Farmer's Market, doesn't matter. It's a carb, it'll up your blood sugars. (I know, it sucks). Mind you, if you're upping your insulin, don't just go cutting carbs drastically, because you'll face-plant with a hypo. https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html might help get a grip on things some, but do it SLOWLY and keep in mind that your meds might need adjusting as well.... Though at this point I'm not too sure altering your diet would be the way to go: Wait on all your results first and go from there, altering things now may skew results.

This month I found out, at 44 years old, that certain traits I always thought were associated with my borderline, are actually ADHD... One of which is googling anything and everything, so i do completely understand the need! Now, there's a whole lot of sites about diabetes and how to treat it with or without medication, which tests to do, what lifestyle to adhere to and whatnot. It's a rabbit hole. If you do a deep dive though, keep the previous paragraph in mind: don't change anything radically right now, but take notes as if your life depends on it. Things to discuss with the endo, things to compare your CGM results to etc etc. You're not going to be able to not google, so if you do, make sure it is useful to you rather than solely overwhelming and anxiety-inducing. Also, if you see anything you absolutely want to try, test your heart out to see what it does. Never ever fly blind.

You can do this. It's a lot, but you can.
Hugs,
Jo

Yes I was *very* confused about the PCOS thing… I had a scan when I was about 20 which apparently showed I had it. Then I had another scan this year which showed no PCOS so I have absolutely no idea what happened there.

As far as other meds go I’m not on any steroids or anything else for inflammation. I have been on a small dose of pregabalin for EDS / fibro pain for ages (although during that time it has become a controlled drug so doctors are quite funny about it now) I’m on medication for adhd and anxiety. Other than that, omeprazole, a statin and blood pressure medication. Oh and metformin and insulin, obviously!

 

[JoKalsbeek]

Yes I was *very* confused about the PCOS thing… I had a scan when I was about 20 which apparently showed I had it. Then I had another scan this year which showed no PCOS so I have absolutely no idea what happened there.

As far as other meds go I’m not on any steroids or anything else for inflammation. I have been on a small dose of pregabalin for EDS / fibro pain for ages (although during that time it has become a controlled drug so doctors are quite funny about it now) I’m on medication for adhd and anxiety. Other than that, omeprazole, a statin and blood pressure medication. Oh and metformin and insulin, obviously!

There are so many combo's of drugs for ADHD and anxiety, some might raise blood sugars as well. Though I am quite aware what a rare jewel it is to finally find a combo that works as desired, and without too many side effects. Like I said, needs must. And pregabalin can give you hypers and hypo's more easily than you normally would have them, according to the Dutch leaflet I just went through... Statins are known for raising blood sugars, so a lot of us here won't take them unless there's double digits to contend with, familial high cholesterol or a cardiac event in their pasts... So that's all something to consider. A lot of the things you're on, some of which aren't particularly optional by any stretch of the imagination, can affect your blood sugars as well. Keep in mind that your diabetic team might not be aware what other meds affect your levels, because they're not familiar with the use of them: they're not in their area of expertise.

Everything just makes it a little harder to determine type, treatment and whatnot.... But it does mean that you might have a few answers when it comes to things being unpredictable sometimes.

Hugs,
Jo
PS: If you ever find out how to make a PCOS vanish, let me know, because mine's the size of a satsuma thanks to injections I need every 10 weeks.