Help and opinions?

[nakkila]

Hi everyone

I'm new on the forum and newly diagnosed in September! I didn't really have any symptoms but was diagnosed with A1c of 130/ 14% I was put on insulin straight away.
Doctors presume I'm type 1 as in my late twenties, always been slim etc. But I still haven't got a full diagnosis. I was waiting for my results for ages and my GAD antibodies came back negative. However they still think I'm type 1.

I just had my specialist visit, got my blood tests done and my A1c came back with results of 47/ 6.5% (in 2,5 months)
While I'm super happy to be on a pre-diabetic level, I can't help to be worried about consequences of lowering my levels so quickly? How quickly you lowered yours and with what kind of results? I don't know any diabetics that I can't chat to and feel lonely and paranoid all the time! Also my GP has completely messed up and I've been waiting for referral for eye screening for 2 months now. That adds to my paranoia level, I feel like I'm going crazy. My doctor said that I shouldn't have risk for retinopathy so early on even if lowering quickly but that's what they always say? I've been reading different kind of stories. I feel so terrible and lost . Please share your experiences

 

[NicoleC1971]

Hi everyone

I'm new on the forum and newly diagnosed in September! I didn't really have any symptoms but was diagnosed with A1c of 130/ 14% I was put on insulin straight away.
Doctors presume I'm type 1 as in my late twenties, always been slim etc. But I still haven't got a full diagnosis. I was waiting for my results for ages and my GAD antibodies came back negative. However they still think I'm type 1.

I just had my specialist visit, got my blood tests done and my A1c came back with results of 47/ 6.5% (in 2,5 months)
While I'm super happy to be on a pre-diabetic level, I can't help to be worried about consequences of lowering my levels so quickly? How quickly you lowered yours and with what kind of results? I don't know any diabetics that I can't chat to and feel lonely and paranoid all the time! Also my GP has completely messed up and I've been waiting for referral for eye screening for 2 months now. That adds to my paranoia level, I feel like I'm going crazy. My doctor said that I shouldn't have risk for retinopathy so early on even if lowering quickly but that's what they always say? I've been reading different kind of stories. I feel so terrible and lost . Please share your experiences

Hi and welcome to the forum. I am sure the official welcome will be along soon!
I hope you are feeling a lot better for achieving more normal bgs after your diagnosis.
I was 10 when I was diagnosed and they did not do Hba1c but I imagine mine was pretty high too!
The body likes blood sugars to be in a normal range and dislikes roller coaster sugars but for a type 1 the only thing to do is bring the initial highs down to normal and then to try an get your basal rates correct so that you are steady across 24 hours. The bolus insulin can then be used to boost insulin to cover meals.
As for complications, you should aim for getting into good habits such as testing regularly and working out how you respond to variables such as stress, food and exercise before worrying about your vision. It takes a while of having spiked bgs to get retinal damage and usually type 1 onset is acute whereas type 2s can have had high bgs for a while and are often older, so complications can occur faster.
That said it is critical to get regular eye screening in place so that any chaanges can be spotted.
My story is that I did end up with vision issues and slightly leaky kidneys after my first pregnancy but this was 20 years ahead of my diagnosis and after my teens/20s being spent not caring about my diabetes too much!
I am going to recommend a practical book written by type 1. It is in American but I've found it a useful inspiration given that type 1 is hard to manage!
https://diatribe.org/GetBrightSpots

Good luck and we are all here to chip in. I know it is hard when you don't have access to nurses/doctors and diabetic mates to run things past.

 

[nakkila]

Thank you for replying!
I just feel crazy and paranoid all the time but can't avoid being worried. I think that's fairly normal early on. I didn't have symptoms prior diagnosis, got diagnosed by accident really. Then started insulin and felt horribly tired, eyes were blurry, couldn't feel my hands/feet for some weeks.
I have been pushing for an eye check (and will continue) but everything is so slow. Not having GAD antibodies makes me wonder if I'm even type 1? Though I've always been petite and slim, maybe type 2 wouldn't make sense. Anyway I just waited for the results for a long time and feel like I've gained no knowledge again.
I've managed to keep my blood very stabile, doesn't require much effort to be honest as apparently I'm honeymooning. I also test many many times a day to be on the safe side. ​

 

[mouseee]

There are people who are t2 who are defined as thin outside, fat inside. (Not me though!)

 

[EllieM]

If you're worried about the T1/T2 diagnosis, get a c-peptide test. This measures how much insulin you produce and will be on the low side if T1, high side if T2. But honestly, it would be a miracle if you were T2.

As regards the eyes, I'd argue that it's best to wait for blood sugars to stabilise before testing, as they do all sorts of weird things while sugars are "off" and much of the early diabetic damage (background retinopathy, which you can have for decades without progression or need for treatment) will reverse after some months of good levels.

Congratulations on normalising your levels so quickly. If you can keep to that sort of level then you really are making all the sinister raft of possible complications extremely unlikely. Personally, after 49 years of T1 with some horrendous control in my teen years (think preglucometer and a teenager) I'm still hale and hearty and my T1 hasn't stopped my from doing any of the things I've wanted to do. It's very hard when you start out, as there's so much to learn, but remember in the long run that you rule the diabetes, not the other way round, and try not to let it dominate your life.

Good luck.

 

[Daibell]

Hi. The GAD test is not the best test for T1 despite it's popular use. The C-Peptide is more useful as it shows whether you have high insulin (T2) or low insulin (T1). The GAD test only checks for small range of antibodies and ignores the fact that viruses can be a cause. I believe a virus caused my LADA. Many of us have suffered poor diabetes diagnosis and hence treatment. I'm still listed as T2 despite being a LADA and at least finally given insulin. Like you I have always been slim and the complete set of tablets eventually failed me and my GPs (both) couldn't understand why. Do ask for the C-Peptide or like me have it done privately. You may be in the 'honeymoon' period for many months or years but do insist on insulin if your HBa1C goes above 7%.

 

[Colin Crowhurst]

Hi everyone

I'm new on the forum and newly diagnosed in September! I didn't really have any symptoms but was diagnosed with A1c of 130/ 14% I was put on insulin straight away.
Doctors presume I'm type 1 as in my late twenties, always been slim etc. But I still haven't got a full diagnosis. I was waiting for my results for ages and my GAD antibodies came back negative. However they still think I'm type 1.

I just had my specialist visit, got my blood tests done and my A1c came back with results of 47/ 6.5% (in 2,5 months)
While I'm super happy to be on a pre-diabetic level, I can't help to be worried about consequences of lowering my levels so quickly? How quickly you lowered yours and with what kind of results? I don't know any diabetics that I can't chat to and feel lonely and paranoid all the time! Also my GP has completely messed up and I've been waiting for referral for eye screening for 2 months now. That adds to my paranoia level, I feel like I'm going crazy. My doctor said that I shouldn't have risk for retinopathy so early on even if lowering quickly but that's what they always say? I've been reading different kind of stories. I feel so terrible and lost . Please share your experiences

My experience was similar, DX last Dec, HbA1c 131 down to 50 within 6 months. I don't think lowering that quickly has been a problem for me, and I certainly feel much better, with regard to eye screening it took about 2 months for me, but I could visit the normal optician for a free eye test almost immediately due to the DX. Both these tests found no problems. In terms of Type1 or type 2 my consulatant is now thinking I am type 2 insulin dependant.... we shall see!

 

[nakkila]

My experience was similar, DX last Dec, HbA1c 131 down to 50 within 6 months. I don't think lowering that quickly has been a problem for me, and I certainly feel much better, with regard to eye screening it took about 2 months for me, but I could visit the normal optician for a free eye test almost immediately due to the DX. Both these tests found no problems. In terms of Type1 or type 2 my consulatant is now thinking I am type 2 insulin dependant.... we shall see!

Ah thanks for reassurance. Can I ask why your consultant might think so? That is interesting. and also great results with yout HbA1c. I really hope I can keep mine like that

 

[nakkila]

Thank you so much everyone for your replies and kind words. I know I'm not alone in this but sometimes it just gets hard and I'm overthinking everything in my little head.

 

[Resurgam]

I am a type two, but went from 91 to 47 in 80 days eating low carb. Absolutely no adverse effects and I am now over three years from diagnosis
At my first screening I had background retinopathy. At the second test a year later, was normal.
I hope you can set aside the anxiety about the diabetes - you seem to be doing well so far and taking it seriously. Being in denial is, I think the most serious problem you can have.

 

[hyponilla]

Hi there, don't worry it gets better. The first few months are the worst. I also dropped my HbA1c quickly, from 91 at diagnosis in February to 41 three months later. The result was awful, I got treatment-induced neuropathy (which is very unusual, it requires a special kind of unlucky) where I would wake up at night with burning legs and cramps screaming in pain. My hands and feet would tingle or go numb all the time, sometimes I couldn't feel my legs at all. It lasted for just over a month before it suddenly stopped. I would not have dropped my levels so fast if I'd known that it could be a problem. However now everything is fine.

For eyes I still haven't had mine checked. It takes a while for them to settle in after you start on insulin. I had days when everything was clear and others when it was a complete fog for months. New glasses are on my list for fun things to do in the new year.

 

[Peptide51]

Hey Nakkila.

I hope you’re feeling a bit better about yourself, it sounds like you’re making great progress. There’s a lot to get to grips with in the early days after starting insulin. It sounds like you’re already doing really well at controlling your glucose levels.

I was diagnosed with Type 1/LADA at the end of October. I’m 35, I’d lost about 20lbs in a month, my trousers kept falling down and I could not drink enough water. My A1C was 10.2%. We started basal insulin straight away and my blood glucose stabilized pretty much as you describe. Tracking it with Glooko, my average glucose for the last few weeks is now about 100mg/dL or 5.5mmol/L and the range is 70-140ish. I wanted to reassure you about odd things you may have noticed with your eyes. The rapid reduction in blood sugar levels after starting treatment commonly causes temporary problems with blurriness. I couldn’t read my phone in front of my face as my comfortable focal distance shifted to about arm’s length, and I had awkward moments shivering after swim-training because I couldn’t read the numbers on my locker padlock. But it’s getting much better now ( after about a month of insulin).

This temporary blurriness issue is caused because the ‘jelly’ in your eyes takes time to clear out the sugars it’s accumulated in the time before you were diagnosed. The concentration gradient this establishes between blood vessels and eye means the eye takes up water and bulges a tiny bit, this throws off your ability to focus temporarily. I would trust your doctor on the low risk for retinopathy. You’re young, haven’t had the disease for long and are clearly motivated to control your blood sugar well, you’re going to be great.

Genuinely wishing you get the reassurance from your retina appointment soon.

Peptide51

 

[nakkila]

Hi guys, thanks again for replies. Did you guys just get the C-peptide done without a fuss? Yesterday I was taken to the blood test before meeting my specialist, who after that then told me that they still don't have a diagnosis for me but likely to be type 1. I'm pretty sure she said the c-pep will be done but now that I have an access to my hospital records online, I can't see that test on the list at all. They've taken A1c and all the normal tests to check thyroid, cholesterol etc. plus an urine sample.

Sorry for stupid questions, I'm so new to this ! Seems odd to me that they would just leave this hanging without a closure? Yes it's likely that I am type 1 indeed but would be nice to know for sure. My family also keeps asking all the time.

 

[Daibell]

Hi guys, thanks again for replies. Did you guys just get the C-peptide done without a fuss? Yesterday I was taken to the blood test before meeting my specialist, who after that then told me that they still don't have a diagnosis for me but likely to be type 1. I'm pretty sure she said the c-pep will be done but now that I have an access to my hospital records online, I can't see that test on the list at all. They've taken A1c and all the normal tests to check thyroid, cholesterol etc. plus an urine sample.

Sorry for stupid questions, I'm so new to this ! Seems odd to me that they would just leave this hanging without a closure? Yes it's likely that I am type 1 indeed but would be nice to know for sure. My family also keeps asking all the time.

Hi. I'm afraid what you are seeing is not unusual and diagnosis can be difficult hence the need for the right tests. It's only in recent years that the C-Peptide test has come into use and not all medics are aware of it's value. A decade ago you just had the GAD test and if that was negative you were dumped into the T2 group. You were lucky to even have had the GAD. It sounds like they may not have done the C-Peptide so do ask. Because my GPs were useless I had my two tests done privately by Medichecks. I was never offered the tests by the GP as she shouted me down when I suggested I might be T1. I later discovered that she thought T1 only occurred in the very young; a very dated view. You are not alone and I hope you get the right diagnosis. In some ways the actual diagnosis isn't as important as going onto insulin if your BS keeps rising above 7%. Have a look at the NICE Diabetes guidelines on the web if interested.

 

[nakkila]

Hi. I'm afraid what you are seeing is not unusual and diagnosis can be difficult hence the need for the right tests. It's only in recent years that the C-Peptide test has come into use and not all medics are aware of it's value. A decade ago you just had the GAD test and if that was negative you were dumped into the T2 group. You were lucky to even have had the GAD. It sounds like they may not have done the C-Peptide so do ask. Because my GPs were useless I had my two tests done privately by Medichecks. I was never offered the tests by the GP as she shouted me down when I suggested I might be T1. I later discovered that she thought T1 only occurred in the very young; a very dated view. You are not alone and I hope you get the right diagnosis. In some ways the actual diagnosis isn't as important as going onto insulin if your BS keeps rising above 7%. Have a look at the NICE Diabetes guidelines on the web if interested.

Wow, that GP was totally clueless. Also sounds really rude and horrible. My GPs seem to be clueless as well, but I'm under the care of one of the major hospitals in London and these tests were done there. I'm pretty sure specialist said C-peptide will be done but maybe I heard wrong... I've also had tiredness and 'blurry head' after diagnosis, hope it goes away.
In a way I'm not too worried about this, I'm already on insulin (Lantus/novorapid) and can medicate myself. I guess I'm just that kind of person who needs a 'closure' and also worry about my health a lot

 

[Colin Crowhurst]

Ah thanks for reassurance. Can I ask why your consultant might think so? That is interesting. and also great results with yout HbA1c. I really hope I can keep mine like that

Well on DX was in an ambulance on way to A&E, not sure the proper anti-body tests were run then to confirm one way or another! I think he is mainly looking at how well the results are going; although some coronary issues have also complicated matters over the last year!