Have I got Type 1.5 instead of type 2? Worried I've been misdiagnosed!

[safaristar]

Hi!

Please forgive the really long message! (I have posted it under newly diagnosed too, but wondered if it might be better in here...)

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!

I'm not sure why you are having a snack if you are feeling woozy in the afternoon. Is it because you think you are hypo then?

In general, it's a good idea to consider LADA, particularly with your family history. However, the numbers you are seeing aren't particularly high. In normal circumstances, you could push to see a consultant and ask for a c peptide test, but that's probably not really an option at the moment.

In your case, I'd keep monitoring the numbers and maybe try having less carbohydrate for breakfast (assuming that you are eating carbs at that time of day). If you notice they are getting higher instead of lower, then obviously you need to go back to your GP for more support or a referral.

Hi,

I do have T1.5 after being diagnosed at 37, 4 years ago.

I had a much higher hb1ac than you at diagnosis, but no symptoms other than lethargy, but I also was diagnosed with Hashimoto at the same time.

In the 6 weeks it took me to get my anti-GAD results, but by switching to a low carb diet I dropped it so much my Endo thought that I’d be risking it to go on insulin. This was 4 years ago.

My c-peptide is at the low end of normal now, and my hb1ac is in the 30s.

It is entirely possible you have T1.5, but you won’t know until you get an anti-GAD test done.

In the meantime, you know that your diet is making a difference. The only change I would make is to ditch the porridge at breakfast for something like eggs. This should help you stabilise your blood sugar in the morning and may help you feel better throughout the day.

I tend to need a snack late afternoon. Often I go for some almonds or depending on how low I am half an apple.

In terms of how to add more calories, you need to add fat. Drizzle olive oil over veg as a dressing or sauté them in butter. Add avocado to your diet. Nuts and seeds are good too, as is coconut milk or cream or just normal cream in your coffee in the morning.

In terms of blood sugar range I don’t like to go over 8 after any meal and aim to only go up 2 points. I feel sick over 10, and I’m unable to concentrate properly from around 8.5.

Is your first blood sugar test on waking or before breakfast?

Also, if you can manage 20 minutes of exercise a day this will help too.

Were you overweight before? What was your BMI? The weight loss can be explained by your diet changing, but if you've got excessive thirst, tiredness, peeing at the time you need you speak to your doctor again. Agree you could be LADA but could equally be type 2, hard to know unless you get tested. Probably no comfort but a lot of LADA people are misdiagnosed with type 2 for years before being diagnosed so if you've got to wait a few months and you're otherwise well then it might not make a massive difference at this point.

Sorry, I have been a bit distracted with the kids over the last week of so and haven't got round to checking back in on this.

Many thanks for your replies. The good news is that now, having had the Metformin for a full week, my symptoms seem to have pretty much gone thankfully, so that has obviously done something. So relieved that I feel finally, after three months, much more like my normal self again and hoping that continues. I was struggling with homeschooling when I was feeling as ill as I was... just got to hang on now until I can get more blood tests done, but relieved the metformin is working while I wait.

I have listened to your suggestions and have cut back on having porridge for breakfast every day (though the doctor recommended I carry on with it when I spoke to her this week!) and alternate it with some eggs or cheese and tomatoes instead. I have been having a small afternoon snack some days such as a few strawberries or walnuts. (Endofmytether2020 -Initially I just felt so lethargic at 4pm or so that I thought maybe a snack would help with energy levels, especially as the doctor had suggested that I had maybe cut too many carbs too quickly.)

Fantail - thanks for the tips for extra fats. I'm already eating avocado a couple of lunches each week (with prawns or chicken), and I shall try and add more fats generally, thanks for the suggestions. Since starting the metforming my numbers have largely stayed within the recommended ranges (but as I said, I have nothing to compare it to, as I didn't test my bloods before starting the Metformin). The morning blood test I've been doing is before breakfast, usually about 30-60 minutes after waking. I've been doing the cross trainer for 15-20 minutes daily since the metforming has made me feel well again.

newhousestress - the constant thirst, weeing and tiredness stopped as the week went on after I started the metforming and I'm not noticing them now. I was 95kg (BMI 33.6) on 14th Feb down to 88kg (BMI 31.1) on the 24th March, so I am still overweight, but hopefully I will carry on losing it as I carry on with the low carb diet and exercise.

I still have my doubts about it being type 2 - I can't find any reports online that talk about people having severe symptoms like I had with low diabetic HbA1c numbers (52 on my last check) and needing metformin to make them go away, but I won't know until I get those tests done.

With any luck, I can get the HbA1c numbers down lower and the metformin will continue to work while I wait for those tests, whenever they eventually happen!

Thanks again for all your advice.

I can't low carb due to another medical condition but I am around 5.7 by severely restricting fat. I need (or should do) to exercise quite frequently, I do HIIT up to three times a day. When I remember.