28 years old and very recently diagnosed

[Zen]

Hi all 🙂 Very recently diagnosed and I have no idea where to begin or what to do?! My journey so far:

• Went to doctors for a thrush infection
• Had two hypo's whilst out and about - Didn't know what was happening with me
• Had a HbA1c test... Result was 77mmol/mol
• Another test a month later (64 mmol/mol) formally diagnosed as Diabetes Mellitus T2.
• Got a flu jab last week.

All of this since August. Wowzah! A crazy 2 months.

I have been told that I don't quite fit into the box of someone with T2 Diabetes, though that is my diagnosis. My blood pressure is really good. Whilst I am overweight at 15 7lb, my 6ft height and stocky/muscular(ish!) build apparently doesn't fit into this box either. I don't smoke or drink anymore, lead a relatively active lifestyle (dog owner, all those walks and having to pay food tax to him prevents me overeating) and I am 28.

I think I have had signs of this happening as early as 5 years ago when I displayed the signs of a hypo at work. Since then I have made an effort to eat and not fast and haven't had any further issues until recently. I have felt exhausted since... forever.

I am not surprised with the diagnosis and if anything, I feel liberated. To finally realise that feeling this fatigued is not normal. To be able to finally understand why I experienced the very scary symptoms of a Hypoglycaemic attack multiple times in my life. I at least now have an answer and knowledge is power as they say.

Non-diabetes related introduction:
I am 28 from the North-East of England. I play the harp. Avid PC gamer. Dog owner.

Question: Are hypo's more likely to occur during/immediately after exercise or during heat? I seem to be more likely to experience them when it is warm... I can't seem to find an answer on this.

 

[Northerner]

Hi all 🙂 Very recently diagnosed and I have no idea where to begin or what to do?! My journey so far:

• Went to doctors for a thrush infection
• Had two hypo's whilst out and about - Didn't know what was happening with me
• Had a HbA1c test... Result was 77mmol/mol
• Another test a month later (64 mmol/mol) formally diagnosed as Diabetes Mellitus T2.
• Got a flu jab last week.

All of this since August. Wowzah! A crazy 2 months.

I have been told that I don't quite fit into the box of someone with T2 Diabetes, though that is my diagnosis. My blood pressure is really good. Whilst I am overweight at 15 7lb, my 6ft height and stocky/muscular(ish!) build apparently doesn't fit into this box either. I don't smoke or drink anymore, lead a relatively active lifestyle (dog owner, all those walks and having to pay food tax to him prevents me overeating) and I am 28.

I think I have had signs of this happening as early as 5 years ago when I displayed the signs of a hypo at work. Since then I have made an effort to eat and not fast and haven't had any further issues until recently. I have felt exhausted since... forever.

I am not surprised with the diagnosis and if anything, I feel liberated. To finally realise that feeling this fatigued is not normal. To be able to finally understand why I experienced the very scary symptoms of a Hypoglycaemic attack multiple times in my life. I at least now have an answer and knowledge is power as they say.

Non-diabetes related introduction:
I am 28 from the North-East of England. I play the harp. Avid PC gamer. Dog owner.

Question: Are hypo's more likely to occur during/immediately after exercise or during heat? I seem to be more likely to experience them when it is warm... I can't seem to find an answer on this.

Hi Zen, welcome to the forum 🙂 Sorry to hear about your diagnosis Have you been given any medication? For clarification, a 'hypo' is when your blood sugar levels drop too low - below a fingerprick reading of 4.0 mmol/l. It's unlikely that what you are experiencing is hypoglycaemia, most probably its big brother hyPERglycaemia, which is an abnormally high blood sugar level, usually in double figures. The only way to know if you are actually experiencing a hypo/low blood sugar when you feel that is what may be happening is to test using a blood glucose monitor - are you doing this?

Your HbA1c is high (although I have seen much higher) which suggests that, for the 2-3 months prior to the test your levels have been running above normal. What steps did you take in the month between the tests to try and reduce the HbA1c? Are you due any more tests and appointments? Sorry for all the questions! 😱 🙂

It is possible that what may be happening is that your levels have been persistently above normal for some time, but on the occasions where you exercise or it is hot your levels drop down and give you a 'false hypo' i.e. your levels are still above 4.0 mmol/l but your brain considers this below what has become 'normal' for you, so reacts the way it does. The only sure-fire way to know is to test, so if you don't have a monitor I would recommend asking your GP for one - failing that, get one of your own (the cheapest option we have come across is the SD Codefree Meter which has test strips at around £8 for 50).

It's possible that you could be a slow-onset Type 1 (also known as Type 1.5 or LADA - Latent Autoimmune Diabetes in Adulthood) rather than a Type 2 as the symptoms are difficult to differentiate initially. However, it is very important to find out if this is the case as Type 2 medications will not work for a slow-onset Type 2. If this hasn't been investigated (there are tests that can be done) then do ask your GP about it, it's possible they are not aware of it and many people can be misdiagnosed (it has happened to many of our members here). What you say about not ticking the normal 'boxes' for Type 2, coupled with the rapid onset of your symptoms make it a strong possibility. Whatever the case though, try not to worry - although diabetes is a serious condition it can be managed very successfully with the right knowledge and application, and there is a wealth of knowledge and support here to help you achieve that 🙂

For now, I'd suggest following the advice given in the excellent Maggie Davey's letter and using the advice in Test,Review, Adjust by Alan S to monitor your tolerances for your various food choices using a blood glucose monitor - but do speak to your GP about the possible Type 1.5/LADA 🙂

Feel free to ask any more questions, and please let us know how you get on 🙂

 

[Zen]

Hi Zen, welcome to the forum 🙂 Sorry to hear about your diagnosis Have you been given any medication? For clarification, a 'hypo' is when your blood sugar levels drop too low - below a fingerprick reading of 4.0 mmol/l. It's unlikely that what you are experiencing is hypoglycaemia, most probably its big brother hyPERglycaemia, which is an abnormally high blood sugar level, usually in double figures. The only way to know if you are actually experiencing a hypo/low blood sugar when you feel that is what may be happening is to test using a blood glucose monitor - are you doing this?

Your HbA1c is high (although I have seen much higher) which suggests that, for the 2-3 months prior to the test your levels have been running above normal. What steps did you take in the month between the tests to try and reduce the HbA1c? Are you due any more tests and appointments? Sorry for all the questions! 😱 🙂

It is possible that what may be happening is that your levels have been persistently above normal for some time, but on the occasions where you exercise or it is hot your levels drop down and give you a 'false hypo' i.e. your levels are still above 4.0 mmol/l but your brain considers this below what has become 'normal' for you, so reacts the way it does. The only sure-fire way to know is to test, so if you don't have a monitor I would recommend asking your GP for one - failing that, get one of your own (the cheapest option we have come across is the SD Codefree Meter which has test strips at around £8 for 50).

It's possible that you could be a slow-onset Type 1 (also known as Type 1.5 or LADA - Latent Autoimmune Diabetes in Adulthood) rather than a Type 2 as the symptoms are difficult to differentiate initially. However, it is very important to find out if this is the case as Type 2 medications will not work for a slow-onset Type 2. If this hasn't been investigated (there are tests that can be done) then do ask your GP about it, it's possible they are not aware of it and many people can be misdiagnosed (it has happened to many of our members here). What you say about not ticking the normal 'boxes' for Type 2, coupled with the rapid onset of your symptoms make it a strong possibility. Whatever the case though, try not to worry - although diabetes is a serious condition it can be managed very successfully with the right knowledge and application, and there is a wealth of knowledge and support here to help you achieve that 🙂

For now, I'd suggest following the advice given in the excellent Maggie Davey's letter and using the advice in Test,Review, Adjust by Alan S to monitor your tolerances for your various food choices using a blood glucose monitor - but do speak to your GP about the possible Type 1.5/LADA 🙂

Feel free to ask any more questions, and please let us know how you get on 🙂

Hi Northerner

I am so uneducated about this whole thing; I really feel as though I've been thrown into the deep end! 😱 I probably have a lot of incorrect and assumed knowledge so I am trying to understand it, your advice really helps with this, thank you for taking the time to respond.

The only change between my two readings was that I began eating more regularly. The nurse practitioner was about to put me on Metformin but after she spoke briefly with a doctor (when getting the prescription) it was agreed I should continue to make changes to diet/exercise and be tested a third time... lol (starting to think my GP is just a bunch of blood collecting vampires 🙄 ) Seriously though, I am due another test in about 2 weeks or so. I think this was in part because I wasn't fasting as much between my 1st and 2nd results. Could it possible I don't have diabetes but in fact some sort of acute false reading because of fasting? Some days I wouldn't eat until 9pm despite waking at 7am (I know how terrible this sounds here, I stupidly thought I was invincible as many in their 20s seem to)

You've gave a lot of helpful advice there, cheers. 😎 I will definitely have a read through it all and take it on board. I don't regularly test myself as I wasn't aware of the monitors but will look into getting one.

J

 

[Northerner]

Happy to help @Zen 🙂 Don't worry, everyone finds it confusing to start with and virtually no-one really understands much about it until it happens to them - then the learning starts! 🙂 It's a complex thing, but take things at your own pace and ask questions whenever you are confused or worried about anything. Fasting or not eating properly is unlikely to cause diabetes - of any type, what's happening is that somehow your body's natural mechanisms for keeping your blood sugar levels in what is, after all, a very narrow 'normal' band, are not functioning very well. Hopefully the further tests will shed a bit more light on things that will help to pin down a suitable treatment 🙂

 

[CathyB]

Welcome @Zen. It’s a lot to take on board but Northerner has given you the best kick start. You talk of fasting but haven’t said what changes you are making to your diet other than not fasting? The best thing you can do is read the links Northerner has given and then ask any questions you might have, no such thing as a stupid question here 😉

 

[Zen]

Appreciate all the comments and advice. Again, I know my knowledge is confined to misinformed and misunderstood information gained whilst growing up, as someone who had no exposure to diabetes until only recently.

As an update: Today I got a form to take to the local hospital for a 1(or I)A2 GAD anti-bodies test for clinical biochemistry C-reptide (on ice)?? (I can barely read the handwriting but it seems to be this aha.) But it's to confirm t1 or t2 diabetes diagnosis.

Will update on the results as and when. Again, thanks everyone for guiding me through this unforeseen chapter in my life.

Thanks Benny G - I don't really consume many carbs as part of my dietary macros though.

 

[trophywench]

It's a C-Peptide test and with the GAD antibodies test will indeed confirm what type of diabetes you have. Look forward to hearing the answer!

 

[SB2015]

Appreciate all the comments and advice. Again, I know my knowledge is confined to misinformed and misunderstood information gained whilst growing up, as someone who had no exposure to diabetes until only recently.

As an update: Today I got a form to take to the local hospital for a 1(or I)A2 GAD anti-bodies test for clinical biochemistry C-reptide (on ice)?? (I can barely read the handwriting but it seems to be this aha.) But it's to confirm t1 or t2 diabetes diagnosis.

Will update on the results as and when. Again, thanks everyone for guiding me through this unforeseen chapter in my life.

Thanks Benny G - I don't really consume many carbs as part of my dietary macros though.

Glad that they are checking this out Zen. For a lot of people they delay diong others tests.
Let us know the outcome.

 

[Zen]

Glad that they are checking this out Zen. For a lot of people they delay diong others tests.
Let us know the outcome.

I fought for it. I spoke with my GP and gave them info on research findings/stats relating to misdiagnosis for people with my waist size/BMI/age as a new type 2 diabetes diagnosis. I basically justified why I should have the test. My GP agreed to this without further question and gave me that note. I attended the hospital on Monday where it was sent to two different places to be tested; Still not heard anything back as yet. It's important to get a correct diagnosis so as not to lose out on months or even years of potentially good blood sugar levels, which could be quite costly to the NHS purse imo. I'll update here as soon as I know. I'd recommend anyone who's newly diagnosed to consider speaking with their GP about these tests.

 

[mikeyB]

The shame is that you had to suggest it.

 

[trophywench]

I think most labs do the GAD tests but the C-peptide aren't. Plus my understanding of the C-pep test is that it does take some time for the sample to go through all the different processes required - hence we can be talking several days at least, rather than within the usual 24hrs for all the 'usual' ones.

 

[Zen]

Glad that they are checking this out Zen. For a lot of people they delay diong others tests.
Let us know the outcome.

I think most labs do the GAD tests but the C-peptide aren't. Plus my understanding of the C-pep test is that it does take some time for the sample to go through all the different processes required - hence we can be talking several days at least, rather than within the usual 24hrs for all the 'usual' ones.

Happy to help @Zen 🙂 Don't worry, everyone finds it confusing to start with and virtually no-one really understands much about it until it happens to them - then the learning starts! 🙂 It's a complex thing, but take things at your own pace and ask questions whenever you are confused or worried about anything. Fasting or not eating properly is unlikely to cause diabetes - of any type, what's happening is that somehow your body's natural mechanisms for keeping your blood sugar levels in what is, after all, a very narrow 'normal' band, are not functioning very well. Hopefully the further tests will shed a bit more light on things that will help to pin down a suitable treatment 🙂

The shame is that you had to suggest it.

Sorry for the uber delay in responding. So, I've had a couple tests since we last spoke. My GP has analysed the full results and was unable to determine if I am type 1 or type 2. It seemed my results didn't put me entirely into either category. They put me on Metformin 500mg x3 times a day (Jan 2019) and made a shared service referral to the Hospital (endocrinologist). This was later upgraded to an urgent referral. I had my meeting with the endocrinology/ hospital today and they maxxed out my Metformin dose saying it was too low and put me on insulin (NovoMix 30 FlexPen 5x3ml) I have to go back in 3 months. It's a 30% soluble insulin aspart and 70% insulin aspart crystallised with protamine (means nothing to me but apparently it's both short term and long term effects of insulin). I have no ketones but my pancreas is producing "some insulin" I think the concern is, if I am type 1.5 (delayed adult onset) then we may have intervened during the early stage, whilst my pancreas is still producing insulin. That was their understanding. They didn't care too much about which type it is though, only that I have excessively high blood sugars despite diet/exercise/tablets. I was advised that it can take 5 years for my pancreas to 'blow out' with the last of its insulin. All I know is my case is a little non-standard and I wanted to weigh in here and keep you guys informed 🙂 You were all so supportive when I first learned of this diagnosis.

Much love and support to you all 🙂

 

[CathyB]

Hi Zen, I’m glad they have you on a treatment plan that will bring your sugar levels down, hopefully you should start to feel much better soon.

 

[Zen]

Hi Zen, thanks for the update. It sounds like you have been treading water since your last post. At 6ft and 157lbs, or 11stone, I don't think you are even slightly overweight, underweight more likely. With the inconclusive results from your blood work it makes sense to get you started on insulin. 70/30 insulin is not anyone's ideal choice, but is okay as a 'training wheels' solution and should help you tame the diabetes beast.

I'm not sure where you got 157lbs or 11stone from, I am certainly above that 😛 I am 5ft11/6ft though.

I am hopeful either way 🙂

 

[Zen]

Hi Zen, sorry, I was rereading posts and how you introduced yourself in your first post at the top of this thread. Ah 15stone 7lbs, never mind. Good luck with the insulin.

Thanks dude 🙂 Means a bunch 🙂

 

[trophywench]

Thank the Lord you now have a plan - all you can do is keep testing your BG and see if the new treatment helps. Presumably they are following you up - but how long are they leaving it before they see you again? Also can you contact them easily now if you're 'in trouble' ?