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High fasting readings, what to do

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Becka

Well-Known Member
Hello. Would a fasting reading normally in 13 – 15 mmol/L be consistent with a type 1 form of diabetes, or would it be higher?

My reason for asking is that I was diagnosed as type 2 several years ago and put on Metformin, Gliclaizde, and told I should test my fasting glucose twice a day. Other than the occasional hypo everything was good, I ended up with an HbA1c usually round 6%. But in the past few months now my fasting readings have usually been in the above range.

Unfortunately my G.P. has not been responding to my requests for help, and I am currently unable to go elsewhere as I am immunosuppressed so have to shield. Instead I tried adjusting my Gliclazide myself, but going from 80mg to the maximum dose of 320mg has made no difference to my readings. They are still in the same range as before. Advice elsewhere suggests I may have LADA, especially as I have other autoimmune conditions.

I did not have any diabetic symptoms when originally diagnosed, it was discovered by chance when having blood tests, and I do not really have any now. No weight loss to suggest DKA. The only changes I have noticed are tiredness, but I have not been sleeping too well which I put down to stress, and periods of general itchiness . From what I have read hyperglycaemia only causes that in the genital area, or it can be caused by neuropathy. But I have no loss of sensation and it only lasts a few days before going away for a while.

So I am wondering whether such a diagnosis would be consistent with my current levels? What should I ask my G.P. to do, just tests or a referral to an endocrinologist? I would definitely be more comfortable with a specialist, but I am not sure whether I would warrant that.

And is it safe to wait until June, when the twelve-week isolation is up, before doing anything given the coronavirus infection risk? Especially if I have to travel to see anyone as I do not drive. Not that I may have any choice if my G.P. will not help, as the N.H.S. has suspended investigating any complaints until at least the end of June.
 
We can't diagnose, but if you begin to feel unwell you should dial 111 and get their advice.
If you are not responding to treatment for type two, then it might not be appropriate for you.
Are you eating a lowish carb diet?
 
Hi and welcome

None of us could really answer that as Type 2s can have high fasting readings if they have not reduced their carbohydrate intake.
Some people are comfort eating during this isolation period and that could certainly make fasting levels increase, but it is possible that you are LADA and it would not be unreasonable to ask for Type 1 testing. Unfortunately that would probably not be considered essential at the moment. What are your other daytime readings like ie pre lunch and 2 hours after lunch and bedtime? If your levels start to go very high (into the upper 20s) then seek urgent medical advice and head for hospital if you go above 30.

If you are not currently following a low carb way of eating then I would recommend trying that to see if it helps reduce your levels but go back to your original lower dose Gliclazide if you are going to do that otherwise you may have a bad hypo and steadily reduce your carbs, starting with breakfast.

If you tell us what an average day's food looks like for you we can make some suggestions for low carb alternatives.... so if you have cereal for breakfast, try an omelette or creamy natural yoghurt with some berries, seeds and nuts mixed in (berries are usually some of the lowest carb fruits, so better than apple or banana or pineapple etc). Reduce your portion size of bread pasta, rice potatoes etc by half and avoid the obvious stuff like cakes, biscuits, sweets and chocolate. We can suggest plenty of low carb treats if you feel the need to snack so please ask. I found that it was important to have access to plenty of low carb treats when I was first cutting down on my carbs as the cravings could be quite bad but once I got past that, I don't really find it difficult at all now, even if other people are digging into cake or biscuits in front of me.... and I was a sugar addict pre diagnosis, so that is miraculous for me.
 
Sorry if I was not clear enough, but I am not asking anyone to make a diagnosis. As I said, my G.P. has not been responding to my requests for help over my high levels. So I need to get as much information as I can to be able to make a clear and specific case for action to be taken.

Therefore I want to know if the fasting levels I have been reading would be consistent with a type 1 form of diabetes. That way I know whether it is reasonable to ask for testing or a referral. Otherwise if my levels are too low to justify such a diagnosis I will be simply dismissed out of hand. It would also help my own peace of mind in the mean time to have some sort of understanding of what is happening.

Secondly, I then want to know what specifically I should be asking for. I have lost confidence in my G.P. because of their unwillingness in helping me so would rather be referred to a specialist. But I do not know if that is possible with the N.H.S. or whether they would only do that for extreme or complex cases. Assuming that nothing will happen until I come out of isolation, if a referral is reasonable then I can ask for one now to reduce how long I will have to wait later.

And finally, I just wanted to be sure it is something that can wait at those levels. I said I was diagnosed by chance, and at the time I was upset because they treated it like a serious and urgent problem over the issue they were supposed to be investigating. It makes their lack of interest now seem strange, but also makes me wonder whether I should also be taking this as a more serious risk than the coronavirus one if I am effectively back in the same situation. So should I be asking for immediate action or just wait another two months.

Those are the only three questions I need help with. Then I can make a clear and specific request to the G.P., and if still ignored hopefully be able to convince the N.H.S. it is an urgent issue so they will intervene.

Just to clear up the other points, as I said, I do not think I am experience any symptoms due to my high levels, though I never did when originally diagnosed either.

Whilst my readings are normally in the 13 – 15 mmol/L range, they are times they have been down into single digits or into the twenties. A couple of times I have even had a fasting reading into the 30s (and I had noted these to the G.P.). Should I really have gone to hospital on those occasions? Right now that would be the worst place for me to be given my infection risk.

Because I was only told to test fasting readings twice a day, that is all I perform other than when I feel a hypo. As my test strips are prescribed and I cannot afford my own I have not tested at other times as I do not have the flexibility to do that, but also have never needed to.

I should also have said that my higher levels were despite no changes to my diet or lifestyle. Although since shielding it has made shopping very difficult for various reasons (again my G.P. is aware), so there has been no opportunity for comfort eating and little flexibility to change my diet which is the best it can be.

Although because of the hypo risk I only went to the maximum Gliclazide dose after first being unsuccessful with couple of smaller increase so I felt confident in the result. At the end of the week my final test will be to stop taking it completely as I am now feel certain it will not cause them to increase.

Obviously I should not have to be doing that at all, or asking for advice here, but I feel left with no alternative. All I can do for myself right now is gather as much information as I can so that everything can be dealt with as quickly as possible when things become a little more normal.

Thanks!
 
Whatever a fasting blood test might tell someone, it's never what type of diabetes they happen to have. There are specific tests to do the latter, amongst them GAD65 antibodies and C-peptide tests, both requiring more blood than a fingerprick test, then sent off to a lab to do those tests.

You can't test fasting blood glucose except immediately after the end of a fast, in a normal person's life, usually when they first wake up in a morning because they've not had a bite to eat or drink since they went to bed, neither have they taken any exercise or done anything else whatsoever. Best done before you even get out of bed, but not possible for me these days, so it's done immediately after I've been to the loo before I even have a wash or put the kettle on.

Tests done at other times of day with no direction as to before/after a meal or whatever, are random tests from which you can learn very little.

If you want your testing to be of real use to you - and you do want that if you want to control your diabetes whatever label it has - read this to learn how to go about it.

Test, Review, Adjust

Managing blood glucose levels for type 2 diabetes. Learning how to achieve long term control by testing and diet.
loraldiabetes.blogspot.com loraldiabetes.blogspot.com

One thing that works for T1 and T2 people to different extents depending on which type it is, is to reduce the amount of carbohydrates we eat and also to lose weight should we need to. Every 'Type' needs to help themselves every day cos however good our medical team happen to be - they cannot possibly do the day to day management of it for us - nobody can or will, unless we are a babe in arms.
 
Without knowing what you are eating before you get those readings it would be hard to comment on if Type 1 or LADA is more likely than Type 2. If you are following a very low carb diet (under 50g carbs a day) and getting those readings then Type 1 or LADA is much more likely.

You are clearly prepared to experiment, since you have varied your medication without authorisation, therefore why not use your test strips to "Test Review Adjust" your diet and see how you get on

It is likely that many LADA patients are misdiagnosed as Type 2 and end up on insulin but don't get the appropriate testing or diagnosis. When their BG gets out of control and does not respond to oral meds, their HCP just starts them on insulin but continues to assume they are Type 2 unless they are very well informed about Diabetes.... most GPs will not have heard of LADA and will often be under the impression that Type 1 diabetes only exhibits in children and young adults, so you can be on a hiding to nothing arguing your point. There are benefits to getting a Type 1 diagnosis in respect of technology which is sometimes available like pumps and Flash glucose monitoring but not every Type 1 will qualify for these things, so there may be little benefit in getting your diagnosis changed.

As @trophywench says, Diabetes is all about self management. That is a combination of diet, exercise and medication. All 3 are important and on a day to day basis, you are responsible for balancing them. I appreciate that the medication you are on may no longer be appropriate/effective but until you start keeping a food diary with readings before and after food, and cutting your carbohydrate intake, it would be difficult to gain evidence which would point to misdiagnosis.

For info, I was diagnosed last year and initially assumed to be Type 2 and stared on Metformin and then Gliclazide. I immediately cut all the sweet stuff from my diet and then started cutting back on the starchy carbs with the help of this forum. Bread, pasta, rice and couscous all got eliminated from my menu. My breakfast porridge was the last carbohydrate food I gave up but my HbA1c increased from 112 to 116 and they started me on insulin 6 weeks later. It was another 2 months before I saw the consultant and got tested for Type 1 but by then I had plenty of evidence of my readings despite eating a very low carb diet.

Hopefully this helps you formulate a plan of action. It is certainly a good idea to email your GP with your current readings and concerns but if you are eating carbohydrate rich foods, then start testing and cutting back and see how you get on. Even if you continue to just do 2 tests a day but do before breakfast and 2 hours after for the first few days and then test before lunch and 2 hours after for the next few days and then test your evening meal for a few days. Make a note of what you ate including portion size ie 2 slices of wholemeal bread or a weetabix or amount of carbs ie so many grams of uncooked pasta (regular or wholewheat) and the grams of carbs that contains together with your before and after readings. Some people find low GI carbs slow down their BG response whilst others like myself see very little difference and avoid all forms.
 
Welcome to the forum @Becka

Some of the factors that often prompt forum members to speculate about whether a person might want to ask their GP about LADA include a rapid escalation of BGs despite increased meds within a year or two of diagnosis (generally with higher BGs than you are seeing) along with unexpected weight loss, thirst and extra trips to the toilet.

It‘s certainly worth you asking the questions, and your history of autoimmune conditions could be a factor, but the tricky thing about LADA is that beta cells tend to be destroyed over a longer period, so the evolution can take some time.

Hope you get some clarity, despite the covid19 chaos :(
 
Thank you so much, that is exactly what I wanted to know. When LADA was suggested I was surprised as I would have thought that would mean much higher levels but was unable to find anything out. I was expecting it to be something about the medication that was the problem rather than me. That is why I felt this would be. good place to ask.

Incidentally, I was never properly tested when I was originally diagnosed, I simply had a high glucose reading as part of some standard tests. No symptoms then, despite my levels clearly having been high for some time, so I am not surprised I do not think I have any now. But my G.P. ordered an HbA1c test to verify diabetes, and then decided which type it was from a ketone strip test. Presumably they were unsure because my weight was not a problem, which is why I went on Gliclazide straight away.

Unhelpfully I cannot remember now when or how the current situation changed. There was over a month before the lockdown when I was having trouble getting the attention of a G.P., but checking on my glucometer (a simple TrueYou mini) it only goes back to January 29th, after which the data seems to have been lost. It cannot have been much earlier than that, as I do think it was sudden though I do not think there were any symptoms.

Though I would not say my experimentation is unauthorized. In my annoyance with my concerns being ignored, in the repeat prescription order I added in the comments they should increase my dose to 120mg and they did it! I took that to mean I am free to look after my own care, but when cautious increases made no difference I felt safe in jumping to the maximum dose to confirm what seemed obvious.

But tomorrow I have a telephone appointment with the surgery's pharmacist about a prescription another clinic has ordered for me, so I will also bring the issue up with them as it is a medication one. Maybe they will want to prescribe a different sulfonylurea? Presumably that is something they can try now without needing to see me, as the alternative is to wait two months to be able to do blood tests.

Although I am doubtful about that. Given it is now being said openly that some form of restrictions will continue well into next year, it is seems impossible to imagine shielding not being extended. But I am immunosuppressed with a comorbid lung disease and uncontrolled diabetes. so going to a hospital for tests is probably the last place I should be.
 
Becka said:
But my G.P. ordered an HbA1c test to verify diabetes, and then decided which type it was from a ketone strip test. Presumably they were unsure because my weight was not a problem
Click to expand...

Ketones can be a useful hint (because people with T2 don’t generally produce them much), but it’s not 100% clear cut.

Being normal weight or under weight at diagnosis doesn’t immediately preclude T2, but it’s another chin-scratching moment that might suggest further investigations are worthwhile.

Some of the best checks are C-peptide and antibody checks like GAD. But even these are not 100% conclusive in themselves and need to be interpreted alongside the clinical factors of your presentation.

If it does end up being LADA, and you are now approaching the tipping point where your remaining beta cells are not able to cope, then pushing them harder with T2 meds like may hasten their demise, so it might be worth asking for some other checks like c-peptide and GAD to confirm or deny your T2 classification?
 
One of the first thing I will have to do once allowed outside is to change surgeries.

When the pharmacist called they asked what I wanted, and when I said they told me to call they denied having the clinic letter. I had to find my copy before they accepted they did have it. To which they just said they would send the prescription without no discussion, which they could have just done originally without having made me call.

But I explained the situation with my diabetes, just the high readings and lack of effect in changing dose. As it was not a G.P. I did not going any further than discussing the medication. Afterward explaining I was repeatedly asked about things I had just said, and whenever I started to answer I would keep being interrupted.

I was told that the prick test readings are just snapshots and do not reflect my glucose levels, so I would need a HbA1C test. Whilst I know that is technically true, a couple of months of consistent high readings is not going to be a coincidence. And when I said I had had two readings in the 30s (which I double checked on the opposite hand) I was told that that was impossible!

Initially they said I will have to wait until I stopped shielding for the blood test. But when I expressed my worry about two months more of high glucose, they said I needed a new agent. Not temporarily or because of my concerns, but as though that was the answer and they would have done nothing if I had not made a fuss.

That call was such a frustrating and upsetting experience. It is why I wanted to have as much information as possible. Unfortunately I was still lacking.

They prescribed Sitagliptin 100mg to be taken in addition to Gliclazide at 320mg and Metformin. It was only in hindsight after looking it up that I realized they must have taken my high glucose levels on 320mg as Gliclazide not having enough effect. Even though I did make it clear that I was reporting that it was not having any effect, even at 320mg. Probably because they kept interrupting me whilst trying to explain and only seemed interested in the dose number.

Anyway, I will take the prescription as given and see what the effects are. If it has no effect then presumably the type will not matter as inulin would be the next treatment level on the NICE T2 pathway anyway. If it has a little effect I will stop Gliclazide to confirm that part is (still) not working, then explicitly ask to try a different sulfonylurea.

If it gets everything properly under control I will be extremely amazed. But obviously I need an up to date HbA1c, so will get that done as soon as I can, and then can ask then whether the other tests will be worth doing anyway as they may suggest what might happen next. My body suddenly changing its response would still something to be concerned about.
 
Don't think there's owt wrong with your thought processes Becka and that's a fact. Normally I'd want you to go to A&E.

Does anyone actually have a clue what might happen if Becka rang 111 and made it abundantly clear she's at her wits end what to do about it all? (Becka if you need a slice an onion whilst calling them - do so! I do think you may need to lay it on thick)
 
That call was such a frustrating and upsetting experience. It is why I wanted to have as much information as possible. Unfortunately I was still lacking.

@Becka Dont blame yourself. I’ve had similar frustrating experiences - and I’m sure I’m not alone! Don’t let it upset you or get to you (and do feel free to have a good old moan on here).

The important thing is to get your blood sugar sorted, and I really hope you can. X
 
Sorry you’ve had such an upsetting call @Becka

I am starting to think you need to be seen by a hospital diabetes specialist who can assess for some other form of diabetes than T2.
 
Becka said:
Sorry if I was not clear enough, but I am not asking anyone to make a diagnosis. As I said, my G.P. has not been responding to my requests for help over my high levels. So I need to get as much information as I can to be able to make a clear and specific case for action to be taken.
Click to expand...
Hi Becka,
if you haven't emailed the surgery then do so instead of phoning. It's unacceptable for your GP not to respond in the correct manor. The NHS is still open for people needing to be seen and you need to be seen.
A nr neighbour had the district nurse come out the other day to do his bloods and B12 injection, due to him supposedly being very high risk and isolating.

Oddly enough after the nurse left he and his wife went out together in their car! (Which peed me off no end) My point being that any bloods needed can be done from your home as can starting insulin if that is what is needed.
 
Thank you all.

My levels seem to have jumped to their current state rather than increased gradually, so hopefully the extremely high ones will remain as rare exceptions that I can avoid needing hospital attention. Though obviously if they do become more frequent I will get immediate help. I have a feeling that my beta cells are probably dying but there must be a little left in me, so with the Sitagliptin I may be able to buy some time until I can be properly tested.

That is interesting they have separate covid and non-covid sections of A&E. I suppose it makes sense they have to do that, though there is only so much you can do to stop viruses getting around. It is the truism that hospitals are the worst place to catch infections that puts me off wanting to visit one.

And I never really considered that someone could come to me to administer blood tests, but that is obvious in hindsight too. If things stay the same or get worse I will try to ask for that, as it is not reasonable to wait several months when it will be doing damage. Although I fear the G.P. will just say to wait, and so I may need to end up needing hospital attention as the only way to get help.

Anyway, tomorrow will be a better day as I finally have some shopping coming. It shows how much the coronavirus has change the world that I am genuinely excited that I will be receiving a cabbage!
 
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