1 month in, and left to my own devices!

[Mrs HJG]

Hi everyone.

I was diagnosed (T1) on 10th December after a multitude of blood tests for back pain and weight loss with a subsequent HbA1c of 129.5! I'm 51, have lost 20kg in the last 6 months (without trying), now 61kg, and was immediately put on insulin by the Diabetes nurse at my surgery. 4 days later the hospital Diabetes team said it was more likely to be T2, changed the type of insulin and started Metformin.

Since my very bland, tearful and stressful Christmas I have come off the insulin and upped the Metformin gradually to 4 per day, no side effects and blood glucose levels before meals typically between 4.5 and 6.5 'this year'. I have been eating healthy meals, minimal snacking and consciously trying to keep carbs to less than 50g per meal and only a single Christmas treat, until they run out, eg. mini mince pie, or one tiny Celebration per day.

My eyesight/varifocals, (not great beforehand) were playing up a little before diagnosis, and when my blood glucose plummeted, I couldn't see anything in focus until New Year, like wearing the wrong/no glasses; my vision is improving finally, distance and TV are almost normal again, phone/laptop still need a magnifying glass, but I'm not scared that it won't ever come back any more.

I spoke to the Diabetes nurse this morning, she was pleased with my levels, said to stop testing, I'll get a call for another HbA1c in March and my eye retinopathy check appointment will come through 'soon'. I am still awaiting my GAD result, and a CT, but without any real advice I have been left to it! I was sent one link (which my phone said was not a trusted site) and that's it.

Am I deluded to expect a bit more support? Forums like this have been the only place I have found out my eyesight loss was not uncommon, nurse and Specsavers' optomotrist didn't know if it was related(!), and that looking at carbs, not just the sugars is important, because no diet advice has been given by the nurse. I know everything with the NHS is stretched, but feeling that there must be so much more to know or I should bear in mind. I don't know what I don't know or what is relevant, and can't read everything, well anything really at present, but you know what I mean.

So thank you already to the knowledgeable folks who are on here and for those who have asked the questions I needed answering already. Sorry for the long intro, if you are rolling your eyes, I can't see you doing it, yet

 

[Ronancastled]

Firstly deep breath, you've done fantastic.
In fact lowering your BG so quickly has cause your tempoary eye issues.
You've gone from an average BG of 19.6 down to 5.5mmol/L, all inside 6 months, that's phenomenal.

I agree with your team that you are more likely T2 based on your figures.
We now know since 2011 that a there's a subset of T2s whose insulin resistance is entirely down to visceral fat on their pancreas/liver which you've since removed.
The only thing niggling me is how you lost the 20kg without trying, normally that's a sign of T1 yet your meter is not suggesting that, your GAD test will confirm further.

Your eyesight will go back to normal once your brain adjust back to normal glucose levels in your eyeball.
Make sure to chase up that retinopathy check as dramatic improvements in BG can cause retinopathy to progress temporarily.

Sounds like you've got a good handle on low carb already.
Never ever stop testing despite what your told, it's gives you the knowledge on what to eat & adjust accordingly.

Your one of the best cases I've ever read on here so please keep it up.

 

[mouseee]

Great start... I presume as you've read lots on the forum you will keep testing rather than follow the advice! I'm never sure how we are supposed to manage our BG with guess work.

I had dodgy eyes for a few weeks at the time of diagnosis but they resumed normal service eventually.

 

[Alexandra100]

I don't know what I don't know or what is relevant, and can't read everything, well anything really at present, but you know what I mean.

@Mrs HJG it sounds to me as if you are doing a great job, despite getting inadequate support. You probably already know more about coping with diabetes than 99% of NHS personnel! As you can't read comfortably at present, how about listening? Dr Richard K Bernstein is a great authority on Diabetes, both 1 & 2, and has posted umpteen videos on Youtube. The visual element is just him talking, so of no importance. Here is one:

To find other talks relevant to your concerns, just go to Youtube and write them (or get someone else to write them) in to the search bar. You must type in the Dr Richard K. Bernstein (or copy and paste this) as there are other Dr Bernsteins on Youtube.
Good luck!

 

[Mrs HJG]

Thank you @Ronancastled @mouseee and @Alexandra100 I'm a complete control freak and feel I need to know everything NOW, this diagnosis has been a complete shock, so I've got to adjust way more than my eating habits.

I've decided that I will measure my BG 2hrs after tea from now on, as breakfast and lunch are pretty standard and have worked out OK, but as I get a bit more adventurous/brave with my food, I want to be able to make sure I am not drifting into the no-go zone, and I'll know if what I've eaten is a good option for another time. Hope this is as sensible/useful as I think it will be. Better suggestions from the wise are more than welcome.

 

[leadwelly]

hi Mrs HJG - I am a late onset Type1. Initially diagnosed (at 66 some 10 years ago) as type 2 but atypical, i.e. not obese, etc. It was two months before diagnosis was revised to Type1 and I have been a carb counting insulin dependent diabetic since. I lost two stone in weight over that time. Explained by the fact that my body was metabolising fat in an attempt to bring my glucose levels down. It was leaving my body via the kidneys - pee! I was also continuously thirsty as a consequence. My eyesight was also affected as the aqueous humour (between the lens and the cornea of the eye), is not immune from what is happening elsewhere. That took several months to settle down. Ketones is another issue with excessively high blood glucose and should be tested with high glucose levels. Diabetic ketoacidosis is a serious, life threatening condition. As others have said - keep testing.

 

[MrsA2]

I'd suggest getting a ketone meter as well as the one for bg (some do both but using different strips) just to have it handy in case your levels suddenly rise again. If you get high bg and high ketones at the same time it can be very dangerous.

I'm not fully convinced you are a t2, just stay alert there may be changes in diagnosis. There more than 2 types.

Testing both before and 2 hours after a meal give a fuller picture. Testing before may well be low but you could be shooting up afterwards. The difference between the 2 figures shouldn't be more than 2.

And welcome!

 

[Mrs HJG]

Hi @leadwelly @MrsA2

My c-peptide/creatinine ratio urine test result ruled out T1 on New Year's Eve, the GAD is still awaited. I tested for ketones daily the first week, but they never went over 0.4 even when my BG was c.15, so I was told to not carry on, I have some spares just in case. BG hasn't been over 7 since NYE, and that was a small slice of Christmas cake late evening to keep me going until midnight/bedtime, and I haven't been in double figures since 4 days in.

Having read other's threads I am thankful I have reacted so quickly but part confused by the speed, no wonder my eyes can't keep up. I'll impatiently await the GAD result and have a CA 19-9 blood test booked for next week, as it's waaaay cheaper than a CT scan, to help rule out anything more suspect, at my insistence, but as my weight is now stable the nurse and hospital are saying they are not worried, I don't want to mark my cards as being 'one of those patients' already, but... I probably am!

 

[KidDougi]

@Mrs HJG,
Welcome to the forum.
It looks like you have a very good grasp on your diabetes, well done.
GP should be sending you onto a “Desmond“ course. Although I think you are way in advance of that already.
What method are you using to check your Keto levels? I have read that the wee sticks can become ineffective after a while. The finger prick tests are the best but that’s even more holes in your fingers!! I’ve been using a breathalyser type, £43 from Amazon. Seems to do the job okay but goes crazy if you have any alcohol as it detects similar molecules.
I agree with the others, continue testing, data, data, data, it’s the only way you will fully understand and be able to fully control your Diabetes, not that you need my advice on that as you have already done an excellent job. I’ve been self funding a Libre. But aside from not exactly matching the finger prick strips, as it doesn’t read your BG directly, I got into the habit of reading my value too regularly. At times I was taking readings every 15 minutes after a meal. Not necessarily a bad thing when you are first developing an understanding of what your BG levels are doing but as I got into it I was starting to get discouraged by the after meal spikes. So I have backed off now and waiting the 2 hours. This has meant that I can increase my carbs a bit, while staying at a Ketoses level of around 2 and maintaining an average BG level of 5.3.
Oh, you should also be able to apply for ‘exemption’ from paying for your NHS prescriptions.

 

[Mrs HJG]

HI @KidDougi
I have the duel Glucomen Areo 2k machine that can do both ketones and BG, and I just picked up a bulk load of BG strips ordered before the nurse cut off my prescription so those will see me until at least my next HbA1c test. Does everyone test regularly for ketones? As mine were so low at diagnosis with massive BG is it likely they will rise now my BG is pretty 'normal'?

I think a Libre would drive me crazy, I would be checking it every 5 minutes, although back at day 1 I was wanting all the toys asap! If my 3 month results aren't as good as I'm hoping/working hard towards, then I'll be rethinking everything. I am trying not to think about getting into remission as I know it is too early, but if I can keep eating like I am and taking the metformin, I think I'd be happy with that.

I am all sorted with my prescription exemption after the potential £60 charge on day 1 - I just took 3 full boxes of different insulins back to the chemist to dispose of and it would have broken me if I'd paid for them! I ended up going back to the doctors completing the form and getting the unsigned form photocopied for the chemist to accept, (the nurse hadn't even told me I could get an exemption). Diagnosis was not a good day!

 

[ianf0ster]

Type 2's generally don't bother testing for Ketones unless their BG goes really high. Even then it's very rare for Type 2's to suffer from DKA. Even a Type 1 on a low carb / keto diet or even fasting for up to 5 days is very unlikely to have high ketones id low carb adapted as was proved on both the UK and South African challenges where a bunch of people including T1's and T2' s ran / walked the equivalent of 4 marathons over 5 days without food.
I tried testing to test for ketones using the wee sticks when I first went low carb, but I never got a conclusive reading and gave up.
There are some on a strictly Keto diet who like to check they are in Ketosis - wee sticks are no good for this after the body adapts and starts running on ketones because then they are no longer excreted.

 

[Mrs HJG]

Great info @ianf0ster thank you. The only advice I got in the first week, when I was testing, was that if ketones hit 7, go to A&E!
I'm definitely not low carb, just lower carb, cutting out the sweets, biscuits, pasta and potatoes mostly. I don't need to lose weight, I've ended up at my goal weight by 'accident', and don't want to end up obsessing over every gram I eat, time will tell if I need to, but so far so good!

PS. I wanted to 'like' your comment, but don't want to spoil your numbers!

 

[ianf0ster]

Yes, this needs to be sustainable, so its best not to go too hard at cutting carbs, since most of them are tasty (as are fats) and we are used to eating them. This is a marathon so we don't want to get burnt out in the first mile !

Actually once I reached my target weight I increased my protein and fat consumption more than adding back carbs. This slowed down my weight loss and it has now stabilised and I'm happy with it even though it is a bit lower than my initial target. Its around the level I was 50yrs ago (age 20 ) when even back then (when people were mostly thin) people thought I was very slim.

 

[Sarahlouxoxo]

Hi everyone.

I was diagnosed (T1) on 10th December after a multitude of blood tests for back pain and weight loss with a subsequent HbA1c of 129.5! I'm 51, have lost 20kg in the last 6 months (without trying), now 61kg, and was immediately put on insulin by the Diabetes nurse at my surgery. 4 days later the hospital Diabetes team said it was more likely to be T2, changed the type of insulin and started Metformin.

Since my very bland, tearful and stressful Christmas I have come off the insulin and upped the Metformin gradually to 4 per day, no side effects and blood glucose levels before meals typically between 4.5 and 6.5 'this year'. I have been eating healthy meals, minimal snacking and consciously trying to keep carbs to less than 50g per meal and only a single Christmas treat, until they run out, eg. mini mince pie, or one tiny Celebration per day.

My eyesight/varifocals, (not great beforehand) were playing up a little before diagnosis, and when my blood glucose plummeted, I couldn't see anything in focus until New Year, like wearing the wrong/no glasses; my vision is improving finally, distance and TV are almost normal again, phone/laptop still need a magnifying glass, but I'm not scared that it won't ever come back any more.

I spoke to the Diabetes nurse this morning, she was pleased with my levels, said to stop testing, I'll get a call for another HbA1c in March and my eye retinopathy check appointment will come through 'soon'. I am still awaiting my GAD result, and a CT, but without any real advice I have been left to it! I was sent one link (which my phone said was not a trusted site) and that's it.

Am I deluded to expect a bit more support? Forums like this have been the only place I have found out my eyesight loss was not uncommon, nurse and Specsavers' optomotrist didn't know if it was related(!), and that looking at carbs, not just the sugars is important, because no diet advice has been given by the nurse. I know everything with the NHS is stretched, but feeling that there must be so much more to know or I should bear in mind. I don't know what I don't know or what is relevant, and can't read everything, well anything really at present, but you know what I mean.

So thank you already to the knowledgeable folks who are on here and for those who have asked the questions I needed answering already. Sorry for the long intro, if you are rolling your eyes, I can't see you doing it, yet

Hi I was diagnosed New Year’s Day with T1D and I feel the exact same as you, I had some support in hospital but after I was discharged I’ve literally been left to it. I was crying in the hospital because I couldn’t see (34 year old single mother of three children under 8) and I was so scared and unsure of how I could look after them with my vision so impaired. The doctor in hospital literally put up his fingers and asked me to tell him how many fingers he was putting up, it’s only after extensive research I have found out why my eyes are like this etc. I made my gp get me a referral to the eye clinic at the hospital and there’s no damage to my eyes thank god. Hopefully we will get there, im just binge watching anything I can about diabetes at the moment to get as much knowledge as I can, good luck!!!

 

[KK123]

Even a Type 1 on a low carb / keto diet or even fasting for up to 5 days is very unlikely to have high ketones

Hi Ian, just to add although a type 1 on a low carb/keto diet may be unlikely to have high ketones in the circumstances you describe just because of fasting/low carbing, the potential danger is that a sudden illness can send those glucose levels sky high with or without any carbs, and if those ketones are above '3' which is not even that high for someone in keto (or thereabouts) whether from fasting or not, then the two things meet and it becomes an emergency very quickly. With regard to fasting for 5 days, again it's not just the carbs that send levels shooting up as you know of course, which is why we have to always take our basal no matter what. If that's out of kilter then fasting or no, you can still end up with sky high levels. I have had periods of being in keto where my ketone levels have gone above 4 but I do have to keep a very close eye on my glucose levels or any pending bouts of illness coming on.

 

[ianf0ster]

Yes @KK123 Dr Ian Lake and the other T1D's doing the fasted 4 marathon distance in 5 days did report taking their basal as usual and I recall that twice Ian Lake took a glucose tablet because his CGM was warning of potential hypo, but he considers that medicine rather than food.

 

[Mrs HJG]

Oh @Sarahlouxoxo I feel your pain! I think the 'professionals' who deal with diabetics all day every day forget that to us it is all completely new and scary and we know nothing. Thank goodness for places like this - although it is still hard to know what is 'relevant to me', and trying not to go down too many rabbit holes of doom.
I found a little fungal toenail (sorry, tmi), as I left my nail varnish on too long, and quickly got convinced I would end up with having my foot amputated - 2 weeks of over the counter treatment and it's almost gone, like a normal person!

 

[Alexandra100]

2 weeks of over the counter treatment

@Mrs HJG Please, which treatment did you use? I have this problem too.

 

[coby]

Type 2's generally don't bother testing for Ketones unless their BG goes really high. Even then it's very rare for Type 2's to suffer from DKA. Even a Type 1 on a low carb / keto diet or even fasting for up to 5 days is very unlikely to have high ketones id low carb adapted as was proved on both the UK and South African challenges where a bunch of people including T1's and T2' s ran / walked the equivalent of 4 marathons over 5 days without food.
I tried testing to test for ketones using the wee sticks when I first went low carb, but I never got a conclusive reading and gave up.
There are some on a strictly Keto diet who like to check they are in Ketosis - wee sticks are no good for this after the body adapts and starts running on ketones because then they are no longer excreted.

@ianf0ster that is very interesting to me (about the ketones) I truly know nothing about them. Sorry to derail

 

[Mrs HJG]

@Alexandra100 'Scholl Fungal Nail Treatment, 3.8 ml' - get it from Amazon, it's half the price of my chemist. Good luck - it's only that the packet says Diabetics should consult the doctor I got googling! My diabetics nurse said to just use over the counter treatments as the prescription one is really strong. Good luck.