Confused about tests!

[Nelly-Lou]

Hi Everyone. I only got my diagnosis a few weeks ago after my fasting glucose levels shot up from 7.1 to 15 in the space of a week (and believe me I starved myself for 12hrs before each!). When the results of the second test came back I was rushed in for heaps of other bloods (HBA1C, liver, thyroid etc) and one which my nurse told me would confirm whether I am T1 or T2 (HBA1C came back at 86). She explained that this test would take quite a while to come back, and the results are due any day now. I am just wondering if anyone can explain to me why this test takes so long to do, as numerous searches on the internet have yielded no results! I have been given meds and a testing kit to monitor my levels but I am really struggling to bring things under control and feel like I am going wrong despite following heaps of advice (dietary and lifestyle changes etc). Any help or advice you can offer would be gratefully received! Thanks!!

 

[Bruce Stephens]

I am just wondering if anyone can explain to me why this test takes so long to do, as numerous searches on the internet have yielded no results!

I imagine it's a C-peptide test. I'm not sure why it would take a long time to do, except maybe it has to be sent a bit further than the much more common tests like HbA1c.

I have been given meds and a testing kit to monitor my levels but I am really struggling to bring things under control and feel like I am going wrong despite following heaps of advice (dietary and lifestyle changes etc).

If you're T1 then that would make sense: you'll need insulin, which you presumably haven't been given. (It may also be that you've been given advice that's not effective. It can still happen that the advice for T2 is a diet which is rather too high in carbohydrates than others in the forum would recommend.)

 

[rebrascora]

Actually I think it might be the GAD antibody test. I am sure my C-peptide test came back fairly quickly but the GAD took about 6 weeks. I don't know what is involved in the testing process to explain why it takes so long but I think it has to be sent off to a specialist lab.

Anyway, welcome to the forum but sorry you find yourself in need of being here. It is all very confusing at first but hopefully you will find the advice here helps you to find your way regardless of diabetes type.

As regards diet and lifestyle changes what advice have you been given. The reason I ask is that NHS advice (particularly for Type 2 diabetics) is often not terribly helpful as they recommend wholemeal/brown carbs and low fat and plenty of fruit and veg. Unfortunately the body breaks down all carbs no matter what colour into glucose which gets absorbed into our blood stream and fruit contains sugars which do exactly the same, so we recommend gradually reducing portion sizes of all carbs and opting for a small portion of berries as the lowest carb fruit option and generally avoiding exotic fruits like bananas and mangoes and pineapple and be very careful of grapes. Most leafy green veg is good but potatoes and parsnips are high in carbs and need to be restricted.

Obviously if you are Type 1 then you will be started on insulin and will learn to carb count and be able to choose what you want to eat and just match the insulin required for whatever food you choose, but if you are not yet on insulin then slowly reducing your carb intake should help to lower your levels a bit in the mean time.

I know you will be feeling totally overwhelmed at the moment but be assured, it will all get easier and start to make sense, particularly once you get the correct diagnosis and appropriate treatment. Do keep a close eye on your levels and ask for a means of testing for ketones if you haven't been given some Ketostix. You should be testing for ketones when your Blood Glucose (BG) levels reach mid teens and above. High levels of ketones can cause the blood to become acidic and that can lead to organ failure so it is important to be able to test for them when your BG levels are persistently high.

 

[SB2015]

Welcome to the forum @Nelly-Lou and I am sorry to read about your diagnosis.

For us the c-peptide and Gad antibody test have to be sent away so take a bit of time to come back, but it sounds like you haven’t got much longer to wait. If you are T1 it is no surprise that you are finding it difficult to keep your levels in range, as your body will no longer be producing the amount of insulin that you need, so you will eventually need to inject insulin. This sounds scary to start with but quite quickly just becomes pat of your ’new normal’ life. That doesn’t lessen the shock of diagnosis and it does take time to get your head round things.

As @rebrascora has said, do keep a watch on your levels and ask for some ketosticks so that you can monitor these. Ketones develop if you have high glucose levels and if this happens don’t wait, contact your GP. If you get high levels of ketones then it is an emergency and you would need to go to A&E. It is an indication that you need insulin urgently.

Keep a check on glucose levels, if you are worried don’t ignore it, get help.
Keep in touch and let us know how you get on, and fire away with any questions that you have.
Nothing is considered silly on here. Just ask.

 

[everydayupsanddowns]

Sorry to hear about the wait to get your results back @Nelly-Lou

Some of those tests aren’t done in many labs, and I’d imagine those might be struggling with staff absences much like everywhere else at the moment.

Hopefully when your results come through they will give a clear indication of your diabetes type, so that an appropriate course of treatment can be started.

Hope it goes well, and let us know when your results come through. 🙂

 

[Nelly-Lou]

Hi everyone, thank you so much for the replies! I called the GP yesterday and the results still aren’t back . But it is the GAD one that has been done. One of the doctors did call me back though as I explained that I was feeling a bit anxious about everything as my diabetes nurse (who is away on AL until next week) told me she was pretty certain that I was T1 when she called to check how I was getting on a fortnight ago. The doctor was pretty reassuring and explained that the lab doing the testing is down in Glasgow as we don’t have the facilities for it up here in the wilds of Aberdeenshire so sometimes they do take a while to come back but that they would start chasing them up next week for me. He advised me to keep testing myself 4x daily to give them a good idea of how my glucose levels are behaving but was reluctant to increase the meds I’m on (1x 1mg glimepiride AM and 1x 500mg metformin PM) as this could cause hypos. I didn’t ask to increase my meds, he just explained that it could be done but until they get the test back that it would be too risky to do.

With regards to dietary advice, it’s been pretty much the standard eat more fruit and veg, avoid sugary drinks (which I do anyway), avoid sugary snacks kind of thing. I’ve been pretty strict with myself in this respect, allowing myself a treat once a week.

I do have ketones sticks, but they weren’t given to me when I got my kit. On my birthday a few weeks ago I had 1 of the small individual M&S caterpillar cakes (can’t have a birthday without cake!) and about 3 hours after I was feeling really not right. Felt sick, felt tired all of a sudden and struggled to get my eyes to focus on anything. I managed to test my bloods and the result was 16.8 and my meter flashed Ket which confused me……so I called the GP, explained what was happening and was immediately prescribed some ketones sticks and advised to test if I go above 16 again. He told me to drink loads of water until my pal arrived with my sticks and luckily I was only 0.2 but I dread to think what could have happened had they been higher, it was not a nice thing to go through. Always have a couple in my kit with me now wherever I go, just in case. My mum is also diabetic so she has been pretty good for advice, and has started being stricter with what she eats so she sets a good example for me! She’s T2 but on insulin

 

[Nelly-Lou]

Hi everyone the results are finally in…..the GAD anti body result was positive which, I was told, makes me T1. I had a call from the diabetes team at the local hospital and I’m there tomorrow to get the lowdown on everything but the doctor I spoke to suggested I continue on my medication (raising the doses) and that it would be my choice whether to go on insulin or not. Now I’m no expert but surely he should be the one deciding if I need pills or insulin? Obviously now I’m totally confused as was always of the assumption that with T1 using insulin was the norm, and not trying to keep things under control with tablets and diet? If any one has any suggestions/advice/experience then they/it would be gratefully received! Away now to write down as many questions as I can think of so I’m armed and ready for my appointment in the morning! X

 

[Sally71]

Um is that doctor actually qualified?? If you are type 1 then your body can no longer make its own insulin therefore the ONLY possible treatment is insulin injections, nothing else will work. It takes a while for the beta cells to all die off so if you have been managing with type 2 medication so far then one more day probably won’t hurt, but make sure tomorrow that they get you started on insulin because T2 medication won’t work at all pretty soon. Good luck 🙂

 

[helli]

Hi @Nelly-Lou typically, Type 1 in adults comes on slower than for children. Therefore, you may be able to delay starting insulin. But, as you say, you will need it … eventually. Type 1 is an autoimmune disease - our bodies have decided they don’t like insulin producing cells so kills them off. As our body needs insulin to survive, without these cells we have to inject.
You will find that, even if you start insulin straight away, your dose will change over time. Things don’t stay the same. For example, the chances are you still have some of those insulin producing cells so the injections will top up what your body needs.
Some people have adopted ways to attempt to prolong the lives of those cells. I was just keen to get on with it.

Unlike some other conditions, diabetes requires self management. Your doctor/consultant can suggest your treatment and doses but, we are all different and live with our diabetes 24x7 so, over time, you will become the expert rather the doctor … the expert in your diabetes.

Don’t worry you won’t be an expert on day one. In fact, after more than 15 years, I don’t consider myself an expert. But I do think I know more about my diabetes than my doc.

We are here to help and lend our experience to help you build up knowledge about your diabetes.

 

[rebrascora]

Pleased you got the results back and you are confirmed Type 1. Sometimes the tests can be inconclusive and still leave you in limbo.
Are you testing your BG at home and if so, what sort of readings are you getting? If they are mid teens like your opening post mentions, then I would suggest that starting insulin straight away would be a good plan. You could increase oral medication which will encourage your pancreas to produce more insulin but this is effectively "flogging a dying horse" rather than a "dead horse" as with the original saying. I know the honeymoon period (where your body is still producing a bit of your own insulin in fits and starts) can be frustrating, unpredictable and difficult to manage but it also means that you aren't needing "full" doses of insulin straight away, which can be daunting.
In some respects it is good that the doctors are open to giving you choices but obviously that needs to be in a situation where they also give you information so that you can make informed decisions..... and if you have a good team they will make sure you get the education and technical support to make good decisions. As @helli says, we become the experts in our diabetes because the doctors and nurses don't live with us, so they are not there to make the everyday, every meal etc decisions we need to make to keep ourselves safe and everyone is quite individual in how their body works. The diabetes team will point you in the right direction and be there to help you figure it out in the early days and if you stick with us here on the forum, we will also help to fill in the blanks but you will be making most of your own decisions about doses etc before too long or maybe which insulins you want to try or what tech you think might help you etc. You won't always get what you want but if you can put together a good enough case, then you will probably be successful eventually. The forum can teach you about all the different options.....
For instance, if you have a nice steady routine for your day to day life then a long acting basal insulin like Tresiba may suit you quite well, whereas if you have quite a varied lifestyle, where some days you will be more active than others, then a shorter acting basal insulin like Levemir, split into 2 doses, may well work better for you as it will give you more flexibility. You definitely want to make sure that they give you a basal/bolus insulin regime, so that you can eat what you want when you want, rather than a mixed insulin which means you have to eat set amounts of carbs at set times. I know all this will sound like a foreign language but you will soon get the hang of it.
Let us know how you get on.

 

[Inka]

@Nelly-Lou Early introduction of insulin can preserve your remaining insulin-producing cells for longer. Some Type 2 meds will potentially kill them quicker. It would be a no-brainer for me. I’d start the insulin personally. Even if you only need small doses, that will still help.

 

[Nelly-Lou]

Hello again everyone, and thank you for all your help! The meeting with the consultant and DSN went soooo well today, I left feeling confident and reassured. Despite the slightly awful phone call yesterday and the “you can choose if you go on insulin or not” fiasco, it turned out that after taking one look at my log book it was decided I was to be put straight onto levemir and novorapid. The DSN explained about this helping to preserve any remaining insulin producing cells, and it was like everything clicked into place in that moment. I’m still on the metformin in the evening, but off the glimepiride. Haven’t been taught about carb counting etc yet, that is next week when I meet the dietician for the first time. Baby steps! Have done 3 injections so far and can honestly say I was getting myself worked up over nothing, it’s way easier than I would’ve ever dared to imagine. Did have a hypo 2 hours after the first dose of the novorapid though (went down to 2.9, my lowest ever) but this was swiftly dealt with and treated with jelly babies and a slice of toast. Phew! Bedtime now, and some light reading courtesy of the big blue folder I was given at the hospital. Thank you again for all being so helpful, it really means a lot to know I’m not alone on this path and can reach out any time I need to xxx

 

[rebrascora]

So pleased you are feeling more confident and reassured and that you are managing the injections so well. Also, really pleased they have started you on Levemir as it is a great basal insulin. Oh and well done for managing your first insulin induced hypo so well! 2.9 is a nasty one! I can remember my first few hypos, when I felt like I was going to die! Quite surprising that you have had one so soon. Are you following a low carb way of eating? If so, the DSNs may not have taken that into consideration when they suggested your doses. How many units of NR are you taking with meals?

 

[Nelly-Lou]

So pleased you are feeling more confident and reassured and that you are managing the injections so well. Also, really pleased they have started you on Levemir as it is a great basal insulin. Oh and well done for managing your first insulin induced hypo so well! 2.9 is a nasty one! I can remember my first few hypos, when I felt like I was going to die! Quite surprising that you have had one so soon. Are you following a low carb way of eating? If so, the DSNs may not have taken that into consideration when they suggested your doses. How many units of NR are you taking with meals?

Thank you! I spoke to my mum about it in the evening, she used to be a nurse and said that the hypo could’ve been caused by the fact that I still had glimepiride in my system, and also that I’d done my first levemir (2 units) at the hospital and then my first novorapid when I had my very late lunch which is what the nurse told me to do. She did warn me that it could happen so I made sure I was prepared in case it did. I’m currently on 4 units of levemir twice daily, and 5 units of novorapid at each mealtime, until I’ve seen the dietician and learned how to do carb counting and ratios etc. My DSN advised me to keep eating as normal and to take time to learn how my body and the insulin reacts to what I eat. I had rice for tea last night and was 5.0 before bed, did worry that my levels would drop through the night but they were up this morning at 6.7. I honestly don’t think I would manage well on a low carb diet (I’m a potato and rice fiend), but would be willing to have a go at it if it is a suggested course of action to help manage things more effectively. One question I have about the insulin though, is is it common to feel quite tired the first couple of days? I slept soundly last night but woke up feeling extremely groggy and like I hadn’t slept at all! X

 

[helli]

I honestly don’t think I would manage well on a low carb diet (I’m a potato and rice fiend), but would be willing to have a go at it if it is a suggested course of action to help manage things more effectively.

Some people seem to love low carb but I found it a pain in the proverbial when I tried it.
For someone with Type 1, the advantage is that the insulin doses are smaller so a mistake in dose calculation is likely to have a smaller impact. It s not like type 2 where you have an intolerance to carbs.
The challenge for me is, if you eat low carb, you need to consider protein as well as carbs when calculating the insulin dose ... and the timing is different.
Personally, I eat what I want, maintain my weight through exercise and have pretty good diabetes management,.
(I will never call it "diabetes control" because it seems to have a mind of is own at times so I don't think it can ever be controlled.)

One question I have about the insulin though, is is it common to feel quite tired the first couple of days? I slept soundly last night but woke up feeling extremely groggy and like I hadn’t slept at all!

Insulin doesn't make you feel tired but you have had a stressful time recently which is likely to contribute.
Hypos also have a tendency to give you a bit of a "hangover" which could be part of it.

Take care and continue to ask questions.

 

[rebrascora]

Hi. No reason at all why you should eat low carb. I just wondered if it was something you had embarked upon at initial diagnosis if there had been any suggestion that you might be type 2.

The grogginess might be as a result of your hypo the evening before or could possibly be due to a drop in your levels during the night. A reading of 5.0 is quite a low level to go to bed on, especially when you are new to insulin. Did the nurses not give you some guidance on that. If not, do ask them. Most people would have a bedtime snack of long acting carbs to bring their levels up near the top of their range before going to sleep. Usually some cheese and biscuits or a couple of digestives or a slice of toast with peanut butter. Usually a combination of carbs, protein and fat which will slowly release glucose through the night

Do you have a Freestyle Libre sensor or are you just finger pricking? If the latter, it might be a good idea to set an alarm through the night tonight to check what your levels are doing in the small hours. What can happen is that your levels dip between 2-4am and then the liver kicks in and dumps glucose into your blood stream to give you energy to start the day. It might be that your grogginess is due to going a bit low through the night. Obviously, if you have Freestyle Libre you will be able to see on your graph if you hypoed or if your levels held nice and steady through the night. It is referred to as a hypo hangover.

 

[Inka]

No, you most definitely don’t have to eat low carb! Grains are good for your gut microbiome amongst other things. You can just eat a normal healthy diet like anyone else, but obviously need to think more and plan. The only thing I was told to avoid was sugary drinks like Coke except if treating a hypo (and they’re very good for that) or pre-exercise.

The sooner you get carb-counting, the more flexibility you’ll have. It takes time to get experienced with insulin, so don’t rush. Be cautious, test lots and know that it will gradually get a lot easier. Also know that perfection is impossible. It’s a hard job being a pancreas!