Not sure I have been correctly diagnosed... think I actually have type 1.5/LADA

Safaristar

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Hi!

I am desperately hoping some of you on here may have some advice and reassurance for me. I am feeling totally lost at the moment and just want to feel well again and back to my normal self, but feel pushed aside while the Coronavirus situation takes over, as there is no-one to test my bloods until Summer at the earliest!!

I suddenly began to feel ill at the start of January and initially dismissed it as a virus/bug of some kind. I was feeling lethargic and less able to concentrate and focus on tasks, felt slightly blurred vision (more out of focus than actually blurry I think), constantly woozy with a foggy and heavy head, had tinnitus, a numb arm and tingly fingers and a sore ball of my foot - all of which came out of the blue and are very unusual for me.

As the symptoms continued and the list was getting longer, I finally decided the sensible thing to do would be to see a doctor. I know I should have gone earlier, but I'm a busy mum and tend to just get on with it and suffer silently! I've never really been ill before and just assumed it would go away.

Anyway, the doctor suggested I had the over 40 blood test done (I am 43) as I hadn't had bloods checked since 2015. My thyroid was fine, my cholesterol levels were slightly raised, but most interesting of all, it did reveal that I had diabetes. My initial HbA1c was 58. The next day I went for the fasting bloods and that came back at 59. In just under two weeks, having literally cut out all carbs - pasta/potato/bread etc - as well as sugars (alcohol, biscuits etc) and living off a very minimal diet of mainly protein and fats with vegetables and salad, my follow up HbA1c had dropped to 52. After a few days of feeling instantly better, which I put down to the sudden cutting out of carbs and sugars, I still felt rubbish with many of the same symptoms as before. But the doctor was encouraging and said that I had made an amazing start and to keep doing what I was doing as it would be good to try and reverse the diabetes.

As the next few weeks continued, my symptoms did not get better, and it had been long enough for me to rule out a sudden change in diet as a likely cause, so I saw a doctor again. They advised me to phase in a few more carbs again as I had probably gone too cold turkey on it. However, phasing in the odd sandwich or pasta here and there as advised, did not seem to make any difference and if anything, I still felt like my symptoms were getting worse rather than better. I kept asking weekly if it could be a different type of diabetes, especially bearing in mind my mum was type 1 (she was aged 25 when diagnosed), but they said my bloods wouldn't have dropped so much in those two weeks by diet alone (no medication) if it wasn't type 2.

Then a thirst and metallic taste appeared alongside the other ongoing symptoms. And more recently, my skin seems to be more dehydrated on hands and eye area and my very occasional excema has flared up, stronger than usual. I even went to my local urgent care unit as I felt so woozy. They did some bloods and a urine test, but also dismissed that it could be a different diabetes based on the HbA1c figures I gave them, as well as telling them the history of my symptoms and my mum's diabetes. They said it was most likely a viral infection and gave me some paracetamol and hydration via a drip and sent me on my way.

By now, coronavirus had begun to well and truly take over the NHS and I was getting desperate. So, last week, I had another fruitless phone call with a GP a few days after the hospital visit, who said he had no idea and instead set me up a call with the supposed diabetic specialist doctor at my surgery for the following day. I have lost a full stone in the 4 weeks without doing any exercise. I know I had a drastic change in diet, but this still seems a lot to lose so quickly. In spite of my explaining that I really still didn't feel well and recapping all my ongoing symptoms and concerns and once again asking if it could be type 1.5/LADA, she still thought it unlikely and said there was nobody who could do a GAD/antibody test to check until summer at the earliest due to the coronavirus. I had to get pushy and asked if she could try me on some metformin to see if that would help, as my research online indicated that's how LADA would be treated in any case. I felt desperate! Trying to home school your children in a constant woozy state was proving impossible and I just want to feel well again!

So the GP has given me metformin and a blood tester and I have been left to see how I get on while I wait for a GAD test in June at the earliest. I am very aware that could quite likely get delayed given the current situation with coronavirus. I have tried to go privately but they aren't testing bloods either and don't have anyone for even a phone consultation because of coronavirus too!

I started taking the metformin on the evening of the 24th March with my tea, then have been taking one tablet (500mg) with breakfast and one with my evening meal. It's a shame I didn't do my bloods before beginning the medication as I have nothing to compare it to, but the GP kept saying I don't need to with my low HbA1c numbers and that diet alone should be all that is needed.

Since starting the medication and recording the blood sugar my numbers dropped from 9.0 down to lower numbers as follows.

24/3 -9.2 (4 hours after eating as I was just learning how to use the blood tester so hadn't really started yet. Sadly didn't get a before reading)
25/3 before breakfast 9.0 after breakfast 9.0 before tea 5.3 after tea 6.1
26/3 before breakfast 6.3 after breakfast 10.7 before tea 4.6 after tea 6.7
27/3 before breakfast 7.1 after breakfast 8.8 before tea 5.8 after tea 6.6
28/3 before breakfast 7.2 after breakfast 8.8 before tea 8.9 after tea 6.7
29/3 before breakfast 6.6 after breakfast 11.8 before tea 5.1 after tea 6.4
30/3 before breakfast 6.6 after breakfast 9.1

I am being sensible with my diet, eating much less than pre-diagnosis, less snacks, smaller portions and much less sugars and carbs. My appetite has decreased, but I am not feeling hungry and eating sensible portion sizes. I am finding it difficult to up my calorie intake without the carbs and sugars and find that most days I only eat between 900 and 1,200 calories a day and mostly under 100g of carbs and 35g of sugars. (I might eat 125g of carbs on occasion, but never higher). I am tracking on my fitness pal.

Food is trickier at the moment due to isolation and food delivery issues, but a typical day might be:
Breakfast - a smallish to moderate sized portion of porridge and 6 blueberries
Lunch - avocado and prawns with baby plum tomatoes or occasionally a cheese and ham sandwich (with wholemeal bread) and some cucumber.
Dinner - chicken with stiry fry vegetables and a soy/ginger sauce, or bolognaise meat with salad.

Generally I am eating protein with vegetables and nothing else. If I do have a sandwich at lunch, I won't have carbs that evening and vice the versa. Some days I will go without carbs completely, except for the porridge. Before the metformin, I was skipping carbs at 2 of the meals, if not all 3 meals, pretty much every day. I try and have an afternoon snack of 6 or so strawberries or walnuts, or some cheese or olives for example. I tend to drink one coffee with breakfast and one or two cups of tea lunch and afternoon. I drink at least 2 pints of water a day as well.

Since taking the metformin just under a week ago, I do think there has been an improvement on the whole in my symptoms. But I do find I tend to get worse as the day goes on. Around 4pm I feel especially bad and woozy. So I have been trying to have a snack then, but I'm not sure it always makes a difference.

Please help!

I am still not symptom free and feel like I have pretty much self diagnosed and self medicated and keep doubting myself and feeling scared that I am on the wrong path. It might not even be diabetes that is causing me to feel so ill! Or maybe I am doing my body more harm the longer I go misdiagnosed or wrongly medicated! I am just guessing as to what is wrong with me!

It's so hard when I feel that the normal healthcare options aren't in place to do the necessary care.

Does it make sense that I quite likely have type 1.5/LADA instead of type 2?
If it is type 2, why would I be feeling such pronounced symptoms if I'm eating such little carbohydrates and sugars?
Is there anything else that could be causing me this ongoing woozyness, thirst etc?
Is the metformin a good idea until I can get tested?
Do you think I might need a stronger dose even of metformin, or to have it at every meal?
How long should it be before the metformin helps with my symptoms?
Do the blood sugar figures look ok? Do you think the metformin is helping?
Why do I have such ongoing symptoms if the blood sugar and HbA1c figures are relatively low?
Am I eating the right foods?

Any help, thoughts or suggestions gratefully received!

I apologise for such a lengthy first post . Thank you if you managed to read this far!!

I've probably still managed to leave out something, but hopefully this gives you an idea of where I'm at!

Many thanks!
 
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xfieldok

Well-Known Member
Messages
4,182
Type of diabetes
Type 2
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Tablets (oral)
Your before and after figures are ok. Fasting bg is the last number to come down. Forget that for now.

Download the mysugr app. Record your food and readings. After a few days it will give you an estimated hba1c. It won't be accurate for about 3 months but is a good tool so you can set trends. I found it highly motivating when I first started.

Check your numbers after porridge and sandwiches. Many of us T2s can't eat those.

The app on your phone will provide evidence to show the dr when you eventually see him.

Which meter were you given?

Edited to add. The difference in before eating and the reading 2 hours after should be no more than 2.
 
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Safaristar

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Thanks so much for such a quick reply. They gave me a Gluco RX Nexus blood glucose monitoring system.
I will look up the app you have recommended thanks.
Do you think the readings are only lower because of the metformin?
Should I need metformin if my HbA1c was only 52?
Do you think it is normal to feel such symptoms over so many months if it is just type 2?
 

xfieldok

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4,182
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Metformin has minimal effect on our levels.

Your gp may only give you a minimal amount of test strips. Check the cost of the strips in case you need to buy your own to top them up. Might be cheaper to buy your own meter. We can make suggestions for you.

It can take a while to start feeling better, in my case, it was only when I started to feel better that I realized how awful I had been feeling.

Stress can make things worse, so try to chill, as far as you can.
 
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Safaristar

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Thank you! I'm not feeling as stressed as I might under such circumstances. I am just feeling frustrated with all the uncertainty and the fact that I'm not convinced it's normal to feel so ill with the diagnosis they gave me initially and leaving me to continue feeling so ill and unmedicated for three months (until I asked!)... I'm struggling to see how my symptoms fit the relatively low HbA1c numbers at diagnosis and the sudden onset and continuation of my symptoms in spite of the low carb diet.

I'm just trying to check if I'm on the right path I suppose that it could indeed be type 1/LADA instead.

Thanks for the tip - I will look up the glucose strips.
 

xfieldok

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4,182
Type of diabetes
Type 2
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Tablets (oral)
If you are indeed T2, lchf is your best medication. Think carbs not calories. If you are losing more weight than you would like, increase your protein and fats.

Don't eat anything "low fat". When I started I kept my carbs under 20g per day.
 

xfieldok

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4,182
Type of diabetes
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Blimey, just looked up Gluco RX Nexus strips, they are twice as expensive as mine. I use the Tee2. I also have a Caresens Dual which does blood and keytones. Don't get dipsticks for keytones (if you think you might need them) they are not accurate.

Edit, I forgot to add, you should tell your supplier you are diabetic, you shouldn't pay VAT.
 

Safaristar

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So you would recommend eating even fewer carbs than the 80-100g I am generally having? I was happier with the idea of low carb rather than keto, but I can give that a go. When I mentioned calories, it's because I am worried I am not eating enough and wondered if that could be a part of the problem. How do you eat more calories if not eating the carbs? I am not hungry enough to eat more food than I am eating and feel I would be eating more for the sake of it. Do I need to eat more fats then? (I didn't want to put on weight or not lose any...)
 
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Safaristar

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Does the GP generally limit how many glucose strips you can have then? I was hoping to just request more as and when i need them on my prescription! She has given me 4 packs of metformin, but only 100 strips, so I don't have enough strips already to test four times a day for the medication I've been given!
 

xfieldok

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Messages
4,182
Type of diabetes
Type 2
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Tablets (oral)
I usually say bank on using around 200 per month, until you get things under control. You are using your meter to test the effect your food choices are having on you, not for medication.
 

Safaristar

Member
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OK, thnaks - that gives me a good idea of how many I will need. And that the meter will test food choices rather than medication. That makes sense.

Is it normal to get these symptoms for 3 months (and still ongoing) when I have changed my diet so much? Is it normal to take that long for them to go?
 

JMoli

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250
Type of diabetes
LADA
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Insulin
Hi, I’m a relative newbie to diabetes but wanted to send hugs as it sounds like such a stressful situation to be in with all of the Coronavirus stuff going on at the same time. Poor you, and to look after kids etc. It’s not easy. I’m in my 40s, LADA type 1, initially diagnosed with diabetes in early January and it took about a month to confirm LADA. I initially took gliclazide only and blood sugar numbers didn’t come down much, so tried low carb (cut out pasta, rice etc) and got normal in range numbers but kept dropping weight. Now on insulin. I don’t think that helps you much with your diagnosis I’m so sorry, hopefully someone with more knowledge will help xx
 

Safaristar

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Thanks for you reply and much welcomed hugs! The timing of this isn't great, that's for sure! How did you manage to get LADA confirmed so quickly? They've been so dismissive of me when I have queried if they are sure of my type 2 diagnosis! I think it's because I am overweight so fit their idea of type 2. I guess I won't know until I have a blood test to confirm yes or no. As soon as I changed to low carb my HbAc1 numbers did drop, so they argue that means it is type 2 and should be just diet controlled. Were you having awful symptoms or was it just the blood sugars that gave them a clue as to your LADA? I wish I had taken blood readings with meals before the medication so I could see what the sugars were doing before that!
 
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JMoli

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Type of diabetes
LADA
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I didn’t initially have symptoms other than weight loss but had broken up with my boyfriend and been on an elimination diet (had a stomach virus which I thought was ibs) so put it down to that. Went to the dr about tummy issues and they did a urine test, confirmed diabetes. More blood tests in hospital and a month later they told me I was type 1, which they had suspected I think anyway as they had given me a meter and told me to test 4 times a day. That’s so frustrating you can’t have the other tests done, they seem convinced it’s type 2? xx
 

Safaristar

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Sounds like you've had a difficult few months too - it is easy to excuse it for being other things isn't it and you just assume it will pass?! That's why I am concerned. My symptoms haven't eased by diet alone, and in fact new symptoms are still appearing to add to the list. So it seems clear to me that it is unlikely to be type 2. And certainly not unmedicated type 2. Only since taking the metformin do the symptoms seem to be hopefully easing. So I think my body needs the extra help of the metformin, which seems odd when I had moved to such a low carb diet and wouldn't normally be required to have medication for type 2 diet with my lowish HbA1c numbers. It's so confusing! So for now they are still assuming type 2, yes, and there is now a delay before i can get further tests. I've been querying this with them for at least a month already. I'm not convinced they have actually really listened to my symptoms and it's not really been helped by the fact that I have seen 5 different doctors so there hasn't been any consistency. I think it's just been bad luck with the timings of it and that the normal systems aren't in place. Thanks anyway for letting me know your diagnosis background.
 

EllieM

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As soon as I changed to low carb my HbAc1 numbers did drop, so they argue that means it is type 2 and should be just diet controlled.

I'm not a doctor, but would argue that new LADA patients benefit from low carb, because their insulin production tails off slowly over a period of possibly years, and reducing carbs reduces the amount of insulin you need. You need a c-peptide test to determine how much insulin you are making, together with the GAD for antibodies. IMO the c-peptide is more useful, as you can be negative for GAD and still T1. T2s are insulin resistant and tend to overproduce insulin, while T1s underproduce.

I would urge you to get some mechanism for testing ketones (urine strips aren't ideal but they are better than nothing, though I have a caresens dual meter), as if it is LADA then when your insulin production drops further your blood sugar will go up and ketones will be produced in abundance. At that point you would need insulin immediately, not after the COVID-19 has died down, as you would be at risk of diabetic ketoacidosis. (Not to be confused with dietary ketososis which is normal for people on ketogenic diets.) Having said all that, LADA is only a possibility at this stage, and it's likely that even if you were LADA going lower carb would keep you going for a few more months without medical intervention. But watch those sugar levels, if they rise suddenly (persistent teens and above) then it's time to test for blood ketones. (Ketone testing strips are pretty expensive, so you don't need to test frequently, just if your blood sugar levels start to rise unexpectedly.) Moderate to low levels of ketones are perfectly safe and normal on a low carb/keto diet.

Note that there are weird types of diabetes (eg MODY) that they might test you for if other tests ruled out T2 and T1, but I'd agree with the others that your first attempt should be to lower carbs a bit more, Your meter will tell you what you can and can't eat. Keep a record of carbs and blood sugars.

Good luck, they'll sort this out in the end. Try not to stress (it raises blood sugars:)).
 
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JMoli

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Type of diabetes
LADA
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Insulin
Sounds like you've had a difficult few months too - it is easy to excuse it for being other things isn't it and you just assume it will pass?! That's why I am concerned. My symptoms haven't eased by diet alone, and in fact new symptoms are still appearing to add to the list. So it seems clear to me that it is unlikely to be type 2. And certainly not unmedicated type 2. Only since taking the metformin do the symptoms seem to be hopefully easing. So I think my body needs the extra help of the metformin, which seems odd when I had moved to such a low carb diet and wouldn't normally be required to have medication for type 2 diet with my lowish HbA1c numbers. It's so confusing! So for now they are still assuming type 2, yes, and there is now a delay before i can get further tests. I've been querying this with them for at least a month already. I'm not convinced they have actually really listened to my symptoms and it's not really been helped by the fact that I have seen 5 different doctors so there hasn't been any consistency. I think it's just been bad luck with the timings of it and that the normal systems aren't in place. Thanks anyway for letting me know your diagnosis background.

I feel for you, it’s literally the worst time to be in this situation isn’t it. At least you have a meter and can keep an eye on your blood sugar in the meantime and people here are so helpful if you have questions or anxieties xx
 

xfieldok

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4,182
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I would definitely take time to sit back and breathe. In and out. Diabetes level is from 48, you are 52. You can knock this into a cocked hat, no problem. (What exactly is a "cocked hat"?)

Your experience of the Nhs is fairly typical, so don't dispair on that count.
 

HSSS

Expert
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7,473
Type of diabetes
Type 2
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Diet only
Ok it is possible you might be LADA but there nothing in what you’re saying that’s making me jump to that assumption now and feel that there’s plenty of scope for it to be t2.

Metformin is a type 2 medication rather than a type 1 or LADA one usually. Not sure where you got metformin is first line option for LADA. It’s a slow action minimal effect that works to stop over enthusiastic liver dumps (typically morning fasting readings) and curbs appetite a little. Diet is a much more powerful tool.

100g a day would still be way too many for me I need at least half that if not lower to keep my meter tests between 5 and 7 and hb1ac in the prediabetic range. I’m not unusual and started at 58 on diagnosis. Some can do ok on 100g.

Testing your meals is the most important thing you can do and adjust food in accordance with the results. I strongly suspect the porridge and wholemeal bread are doing you no favours at all.

When you feel particularly “odd” see what’s happening on your meter. It might well be a ‘false hypo’. This is when you are running much lower than you are used to, or it has dropped quickly, not when it is actually medically too low. However it feels pretty awful still. It will get better as you get used to it the new healthier normal if so. Upping carbs will just prolong the adjustment but can be useful if feeling really bad but try to minimise how much you add. Just enough to even out the worst of it or you are back on the rollercoaster.

You massively changed your eating and a stone in the first month of that isn’t so rare, particularly if you have quite a lot to lose. If it’s happening too quickly or you don’t need to lose then increase fats. In any case avoid low fat stuff as it’s full of sugar or chemical replacements.

the metallic taste might have been ketosis. It can happen quite a lot higher than 20g for some people.

Two simple things I’d urge you to check that could be making you feel awful are that you are drinking enough. Carbs hold water. Without the Carbs you dehydrated easily. You have some signs of that. Also without processed foods and with more water your electrolytes of sodium potassium and magnesium get out of whack. Make sure you have plenty of these in your foods or supplement. Just these two things make a lot of people feel much better.

If none of these or the other suggestions you have had help then maybe you have a stronger case for suspecting LADA.
 
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