New diagnosis, scared of how quickly this is progressing

[lonjams]

Did anyone else go through this?

Hi, I (35M) was diagnosed with diabetes last week. My symptoms were primarily weight loss, 123kg to 110kg, and thirst). I was started on Metformin once a day by my GP a few days ago, while we wait for autoantibody tests to work out if this could be type 1/LADA.

What has shocked me is the speed at which this has hit me. My HbA1c in May 2022 was 33 mmol/mol and now ,7 months later, is 93 mmol/mol. What is more worrying is that in the last two days I’ve begun to get a burning sensation/pins and needles at the top of both my feet extending from the ankles to my toes which is worse at night. I fear this is peripheral neuropathy. I am waiting to see my GP on Monday (earliest appointment I could get).

I am currently eating a low carb/calorie restricted diet and walking a lot more (3 to 5 miles a day). My fasting blood glucose this morning was 7.8mmol/L (140.58 mg/dL).

My question is has anyone else on here gone through a similar situation where this god awful disease has progressed so rapidly? Is there any hope? Have you had peripheral neuropathy that has improved with better BM control? Any pearls of wisdom? I am quite despondent by this especially the symptoms with my feet and can’t sleep.

 

[DaveB]

Hi. I went down a similar path to you when it appeared out of nowhere at age 50. I did have some tingling in my arms but that disappeared once I got my BS down. Continue with the low-carb diet and forget calories as it's the carbs not fats that are a problem. The Metformin will have a small effect but unlikely to help a lot. You may need to go onto one of the other meds as well such as Gliclazide which stimulates the pancreas to product more insulin. It's possible you may need insulin after a few years - a nuisance but not a big problem. Note that LADA can be caused by antibodies but also viruses. The former should show up with a GAD test but viruses won't. A C-Peptide test is needed to show what your insulin levels are. Be aware that many medics know little about LADA and just assume it's just auto-immune so do insist on a C-Peptide test if needed. So don't worry about the feet at this stage and my eye tests are still good. If you eventually need insulin do go for it. My GP initially refused which was a big mistake. My diabetes consultant readily goes along with my condition and offered me the Libre 2 glucose monitor on prescription and it's a great help.

 

[lonjams]

Thank you

Hi. I went down a similar path to you when it appeared out of nowhere at age 50. I did have some tingling in my arms but that disappeared once I got my BS down. Continue with the low-carb diet and forget calories as it's the carbs not fats that are a problem. The Metformin will have a small effect but unlikely to help a lot. You may need to go onto one of the other meds as well such as Gliclazide which stimulates the pancreas to product more insulin. It's possible you may need insulin after a few years - a nuisance but not a big problem. Note that LADA can be caused by antibodies but also viruses. The former should show up with a GAD test but viruses won't. A C-Peptide test is needed to show what your insulin levels are. Be aware that many medics know little about LADA and just assume it's just auto-immune so do insist on a C-Peptide test if needed. So don't worry about the feet at this stage and my eye tests are still good. If you eventually need insulin do go for it. My GP initially refused which was a big mistake. My diabetes consultant readily goes along with my condition and offered me the Libre 2 glucose monitor on prescription and it's a great help.

Thank you DaveB for taking the time to help me with this. I really appreciate it. The burning/pins and needles in my feet feel like they are getting worse and affecting other parts of the heel… for you did your arms tingling symptoms progress before getting better? I will get onto the GP about the c-peptide as I am not sure that was requested yet.

 

[Inka]

If it’s LADA, which is a form of Type 1, then yes @lonjams it can show itself quickly. If your immune system was attacking your pancreas, then it would have reached a critical breaking point where it could no longer control your blood sugar, hence the deterioration in HBA1C. I remember being told that the pancreas struggled on until it had lost around 80% of its beta cells and that was the tipping point. Weight loss and thirst are the very obvious symptoms.

I’m surprised you weren’t started on insulin while waiting for the antibody tests because they take a while. You shouldn’t have to be limiting your diet if you are Type 1. Type 1s can eat a normal diet with the addition of appropriate insulin.

I’m sorry your feet are so painful. Hopefully once you’ve got your blood sugar under control, this should improve, but you’re sensible speaking to the doctor if you’re in that much pain.

 

[everydayupsanddowns]

Welcome to the forum @lonjams

Rapid onset, and weight loss, and your age do make LADA seem more likely to my completely medically untrained brain.

Keep a close eye on those BG levels, and do get back in touch sith your Dr if they start to rise rapidly.

 

[rebrascora]

Hi and welcome from me too.

Just want to say try not to panic. Firstly, diabetes is a condition, not a disease and as has been explained the rapid onset is quite normal if you have a form of Type 1 diabetes be that standard Type 1 or LADA. Neuropathy is a complication of long term high BG levels, so it is unlikely that the pins and needles/burning sensation you are experiencing in your feet are a permanent feature if your HbA1c was normal in May and will likely be transient. What is more likely is that your sudden dietary changes and consequent drop in BG levels is putting your body under strain and causing your nerves and blood vessels to complain because they will have got used to those higher BG levels. It is best to reduce levels gradually to prevent damage to small blood vessels and the eyes are particularly vulnerable to this as well as the feet, so perhaps be a little less "gung ho!" with your dietary changes. These issues will almost certainly resolve when your levels become stable but there is a risk from dropping levels too fast, so perhaps just ease off a bit with the dietary changes. I cut out sugar and sweets for the first couple of weeks and then bread, pasta and potatoes but still ate porridge and fruit for another couple of weeks or so and then eventually knocked the porridge on the head and reduced my fruit intake to just a few berries in the final couple of weeks before I started on insulin. As others have said, there is no reason why you can't eat a normal diet with Type 1 but it may be quite a while (6 weeks for me before GAD antibody test results came back and another 2 weeks before I saw the consultant and got the results, so unless they start you on insulin before that then just go steady with the dietary changes. A few more weeks of moderately high BG levels might actually be better for your body than suddenly dropping them down into the normal range. Don't be surprised if your eyesight also goes wonky for a month or two. That is also normal and should resolve. But as others have said, do speak to your GP about your concerns.

 

[lonjams]

Thank you all for the time you have taken to help and for your advice. Sorry about the late reply I was having difficulty processing all this.

 

[rebrascora]

We all know it can be really overwhelming at first and sometimes you need to back off a bit and just take it one small step at a time.
How are you managing? Is the tingling burning sensation still as bad or is it easing a bit? It is still early days so don't worry if you haven't seen any improvement yet. That can and hopefully will still happen once your body gets used to more stable, in range BG levels. What sort of readings are you getting now and how are you managing with your diet?
Have you been started on insulin yet?

 

[trophywench]

You sound exactly like you have Type 1 diabetes to me. Not even LADA - T1.

 

[SB2015]

Thank you all for the time you have taken to help and for your advice. Sorry about the late reply I was having difficulty processing all this.

It takes a bit of getting used to. It does sound like you are T1 (or LADA in light of your age, which is just slower onset of T1 but treated in the same way)
Let us know how you are treating your Diabetes, and how you are getting on.

 

[Spathiphyllum]

It takes a bit of getting used to. It does sound like you are T1 (or LADA in light of your age, which is just slower onset of T1 but treated in the same way)
Let us know how you are treating your Diabetes, and how you are getting on.

Yes-- LADA is not a useful concept. It dates from the time (not so very long ago!) when T1 was officially known as 'juvenile diabetes'. Therefore, people who got T1 as adults were thought to need a separate category. The idea of LADA hangs on because, unfortunately, so many people, including many GPs, still assume that T1 is something only children and teenagers get.

In the last few years, studies have been done showing that the majority of people who develop T1 develop it in adulthood! So we now know we don't need the LADA label. It is just plain T1, diagnosable in the same way, by the same tests, whether in adults or children.

 

[trophywench]

I've simply never understood WHY medics would ever think that in this day and age - 50 years ago I went to the GP surgery one Tuesday evening after work, the GP strongly believed I had T1 diabetes so told me to see nurse down the corridor right now, she asked for a pee sample, tested it and sent me back to the GP - who'd rung the hospital and told me to get there tomorrow morning by 10.30 am with whatever I needed to take and be prepared to stay in for a while.

I'd got married the previous year and moved into our nice new house 25ish miles away from where we grew up, so the only thing the surgery already knew about either of us was that we were both as fit as fleas and hadn't before ever needed to visit them! (that's cos you had to go to your local birth control clinic, not your GP, for that, else I'd have certainly consulted them!) I was 22,

So explain why they don't know now?????

 

[Spathiphyllum]

I've simply never understood WHY medics would ever think that in this day and age - 50 years ago I went to the GP surgery one Tuesday evening after work, the GP strongly believed I had T1 diabetes so told me to see nurse down the corridor right now, she asked for a pee sample, tested it and sent me back to the GP - who'd rung the hospital and told me to get there tomorrow morning by 10.30 am with whatever I needed to take and be prepared to stay in for a while.

I'd got married the previous year and moved into our nice new house 25ish miles away from where we grew up, so the only thing the surgery already knew about either of us was that we were both as fit as fleas and hadn't before ever needed to visit them! (that's cos you had to go to your local birth control clinic, not your GP, for that, else I'd have certainly consulted them!) I was 22,

So explain why they don't know now?????

It is bizarre, isn't it? ...

Striving to be charitable, the only thing I can think of is stress. Long list of patients to call and pressure to keep it to 10 minutes leads to knee-jerk responses-- either 'have some metformin' or a dim memory of hearing about something called 'LADA'; long days of 'fire-fighting' and dealing with bureaucracy leads to no time to read or think, especially about a rare disease like Type 1.

(It's easy to forget that we are rare. JDRF says there are about 400,000 of us in the UK. The UK population is about 67.5 million. So-- just under 6 in every thousand people is one of us, of which about 3 developed T1D in adulthood.)

But then rational overcomes charitable! Knowing and remembering that people can get T1D at any age is not rocket science ... Maybe Diabetes UK should have a little campaign about this. Just print a lot of posters, send one to every GP surgery: "PEOPLE CAN GET TYPE 1 DIABETES AT ANY AGE" ...

Or we could have a DIY campaign. Superglue ourselves to GP surgeries' railings ... ; )

 

[SB2015]

How are you doing @lonjams? Any news on final diagnosis?

 

[Specs]

Did anyone else go through this?

Hi, I (35M) was diagnosed with diabetes last week. My symptoms were primarily weight loss, 123kg to 110kg, and thirst). I was started on Metformin once a day by my GP a few days ago, while we wait for autoantibody tests to work out if this could be type 1/LADA.

What has shocked me is the speed at which this has hit me. My HbA1c in May 2022 was 33 mmol/mol and now ,7 months later, is 93 mmol/mol. What is more worrying is that in the last two days I’ve begun to get a burning sensation/pins and needles at the top of both my feet extending from the ankles to my toes which is worse at night. I fear this is peripheral neuropathy. I am waiting to see my GP on Monday (earliest appointment I could get).

I am currently eating a low carb/calorie restricted diet and walking a lot more (3 to 5 miles a day). My fasting blood glucose this morning was 7.8mmol/L (140.58 mg/dL).

My question is has anyone else on here gone through a similar situation where this god awful disease has progressed so rapidly? Is there any hope? Have you had peripheral neuropathy that has improved with better BM control? Any pearls of wisdom? I am quite despondent by this especially the symptoms with my feet and can’t sleep.

Hello, I 've had pins and needles in my feet and now my hands for years and there are meds your GP can prescribe to ease the symptoms like pregabalin if you can cope with the side effects like drowsiness. I haven't dropped dead yet or had anything amputated so I don't panic.
I have fallen down the stairs a couple of times and ended up on crutches with a twisted ankle and bruised toes and I can't wear heels.
I opt for slippers and shoes which are slip proof and my garden has plenty of soft surfaces like bark chips and rubber mats. All my drinking glasses are virtually shatterproof as I drop things.
I've also had some visual disturbances which I put down to migraines. Probably too much screen time. You might like to try an over the counter sleeping remedy and camomile at night. No caffeine after 5 pm. I know some cannabis meds are now legal so that's another option.