# Is this normal?



## GerrieS (Apr 11, 2022)

I started to lose weight in September and was also very thirsty.   Diagnosis of type 2 came in December.  Hab1c started at 13.8 and came down to 10.3 in February.  I am 178cm and my weight fell from 63kg to 57kg (60 years old and female).  I am now on 2g of metformin in the morning and thyroxine (150mcg) in the evening. 
I bought a 2 week flash monitor (after a 2 week free trial).  On attending the consultant's clinic in February I was seen by a more junior doctor who changed the metformin dose and the timing of the thyroxine and told me that a range of 4-7 was quite doable.  
I had a reading of 6.9 once!  The highest that I have recorded is 21.9 and I felt terrible at the point.  It generally sits between 12 and 15 and most days spikes at around18 as it starts to rise around 3am and only begins to fall after lunch.  On a good day it used to go below 10 up to 25% of the time. After the thyroxine change it is rarely below 12.  No one seems concerned.   The flash monitor daily average was 13.5 yesterday and 14.5 the day before that. It is a struggle to maintain my weight at around 58kg eating about 150g of carbs a day from around 2000cals.  I walk around 10 000 steps a day and eat healthily. Could this be storing up problems for the future?


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## Drummer (Apr 11, 2022)

To maintain remission I am eating no more than 40 gm of carbs a day - so eat to your meter rather than any 'guidelines'  as we are all unique and need to work with what we have got, no one else.
I keep to under 7 mmol/l after meals.
The lower carb way of eating seems to be reviving my thyroid after decades of inaction - I used to take 200micrograms of Thyroxine, now I am down to 125 daily.


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## Leadinglights (Apr 11, 2022)

Your daily carbohydrate intake is higher than most people would be able to tolerate and those following a low carb approach would have less than 130g per day and many would be somewhere between 50 and 100g so quite a difference to what you are having. Most regimes promoted to manage blood glucose are aimed at people who need to lose weight as that is one of the indicators of Type 2. If you don't then making sure that when you reduce the carbohydrates you have plenty of protein and healthy fats to help maintain your weight.
I don't know if the thyroid issue is associated with  weight loss but has it been considered that you may be type 1 or LADA as you say you lost weight pretty quickly.
Make good use of your monitor to see what foods and meals you can tolerate by checking before you eat and after 2 hours, an increase of more than 2-3mmol/l would indicate there is something in that meal you are not tolerating well.
This link may give you some ideas for a low carb approach. https://lowcarbfreshwell.co.uk/


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## GerrieS (Apr 11, 2022)

Thank you for your replies.  I tried 100g of carbs per day but felt really ill so nurse suggested 150 but will reduce it to 130 and see how it goes.  The dietician said that my diet was good.  My BMI is 18.4 so I am borderline underwieght.  Asked about type one as I have 3 other autoimmune conditions but they said that I do produce insulin.  Did wonder if my body has started to destroy it?


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## GerrieS (Apr 11, 2022)

PS Freshwell site is very help full.  I use the My Fitness pal app to log cals and carbs.


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## Leadinglights (Apr 11, 2022)

GerrieS said:


> Thank you for your replies.  I tried 100g of carbs per day but felt really ill so nurse suggested 150 but will reduce it to 130 and see how it goes.  The dietician said that my diet was good.  My BMI is 18.4 so I am borderline underwieght.  Asked about type one as I have 3 other autoimmune conditions but they said that I do produce insulin.  Did wonder if my body has started to destroy it?


Did you have both the C-peptide test and GAD antibody test to rule out Type 1? The autoimmune conditions are a bit of a pointer.


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## Ian68 (Apr 11, 2022)

GerrieS said:


> Thank you for your replies.  I tried 100g of carbs per day but felt really ill so nurse suggested 150 but will reduce it to 130 and see how it goes.  The dietician said that my diet was good.  My BMI is 18.4 so I am borderline underwieght.  Asked about type one as I have 3 other autoimmune conditions but they said that I do produce insulin.  Did wonder if my body has started to destroy it?


Sounds very similar to me. Weight loss and being told type 2. I also have a couple of autoimmune diseases other than type 1 Thyroid eye disease and Graves’ disease. It was only when I saw another nurse that she said she would test for type 1 as they are closely linked. At the moment I still produce some insulin so you are more than likely in the same boat.


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## Ian68 (Apr 11, 2022)

GerrieS said:


> I am now on 2g of metformin in the morning and thyroxine (150mcg) in the evening.


Just wondering if you have had your thyroid removed. As that is the same dose I am on since my thyroid was removed. I am  directed to take mine in the morning 30 minutes before eating.


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## Jacqueline DUK (Apr 12, 2022)

Hi @GerrieS, it's great to see you've joined the forum it's a great community! We have a helpline available that may be able to offer some support. You can give us a call on 0345 123 2399 Monday-Friday 9-6pm


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## GerrieS (Apr 12, 2022)

Hi there, thank you for your replies.  I have had Hasimoto's Disease and Pernicious Anemia since 2008 and Vitiligo since 1978.  All easily managed.  Diabetes seems harder to manage.  I was taking thyroxine first thing but was told to swap timings of metformin and thyroxine as thyroxine would help reduce blood sugar.  It has not worked.  If anything it is higher on the same diet and excercise.  Not had these other test so will ask at a telephone apt on Thursday.  I will also contact the helpline.


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## GerrieS (Apr 12, 2022)

Ian68 said:


> Sounds very similar to me. Weight loss and being told type 2. I also have a couple of autoimmune diseases other than type 1 Thyroid eye disease and Graves’ disease. It was only when I saw another nurse that she said she would test for type 1 as they are closely linked. At the moment I still produce some insulin so you are more than likely in the same boat.


Thank you Ian!  I was starting to think that I was the only person in this situation!  I spoke to the helpline to clarify my plan and will ask for the GAD and C-peptide tests and for the GP to talk to the consultant.  Sure that this can be sorted but might need to do some pushing.


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## TheClockworkDodo (Apr 12, 2022)

I would push very hard and as a matter of urgency, because it sounds to me as though it is very likely you are type 1 - the rapid weight loss is the classic symptom which is different from type 2.  If you are type 1 then Metformin won't help, you need to be put on insulin, and the sooner this happens the better for your health.

It can be difficult getting a type 1 diagnosis as an adult because a lot of GPs and surgery nurses don't know much about it and think that only children get type 1, whereas actually over 40% of people diagnosed with type 1 are adults (I was 44 and lucky to get a type 1 diagnosis immediately).  I think @rebrascora is one of the people on the forum who was initially told she was type 2 so she may have more advice for you.

In the meanwhile, while you wait to get tests and a referral to a consultant, it would be a good idea to get a pot of Ketostix from your pharmacy, if you haven't got any - they aren't expensive and will enable you to check your urine to make sure you don't have ketones.  If you do have anything other than trace ketones - or if you start to get stomach pains, feel sick, become very tired or confused, or find your breath smells of pear drops, please go to A&E immediately - these are the symptoms of diabetes ketoacidosis (which is a result of very high blood sugar, usually in untreated type 1s) and it's a medical emergency.

Btw the thyroxine shouldn't have any effect on your blood sugar one way or another, so that's a red herring so far as diabetes is concerned, except that the fact that you have Hashimoto's disease is another pointer which means you are more likely to have type 1, as @Leadinglights says.


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## rebrascora (Apr 13, 2022)

Hi, yes, I was misdiagnosed as Type 2 at first although my nurse was switched on enough to have aquestion mark against it and was in regular contact with me and also having case conferences with the consultant about me in those early few weeks. I managed to get my BG levels down to just into the normal range by the end of week 5 by progressively stripping the carbs out of my diet but I was pretty much eating cardboard and losing weight hand over fist.... Of course I was also following NHS advice to eat low fat and low carb and low fat together are not sustainable. Anyway, week 6 I was started on a basal/bolus insulin regime and a month later I got an appointment to see the consultant. He authorized C-peptide and GAD antibody tests and I got the results 2 months later. I think it is important for both tests to be done and the results interpreted by someone experienced (not a GP or junior registrar). I think it is also preferable to have the blood C-peptide rather than the urine as it gives a much more reliable result. The problem with the blood C-peptide test is that the sample has to be frozen within 20 mins of being drawn and kept frozen whilst sent off to the lab for testing. Most GP practices and small cottage hospitals don't have the facilities for fast freezing and transit of a frozen sample, so do offer to travel to the main hospital for the blood test rather than go for the urine test. Unfortunately these tests can be inconclusive when the results are examined individually and more mature Type 1 diabetics tend to have a slower onset which means that the tests are even less clear cut, so getting the blood C-pep test gives you the best possible chance of them getting the right picture to make that diagnosis from. My C-pep result was borderline normal.... ie my body was just coping but I was eating a low carb diet which was enabling it to just cope. if I had been Type 2 my body would likely have been producing a lot more than normal to overcome insulin resistance. My GAD result came back positive a few weeks later so that was the clincher. Takes 6-8 weeks for the GAD results, but by then I had already been on a basal bolus insulin regime for 3 months.

Anyway, I hope that gives you a bit of an insight. Some people here were misdiagnosed for many months and even years. I am certain that there are quite a few insulin dependent Type 2 diabetics out there who have been misdiagnosed half their lives and will never get a correct diagnosis. Sadly many GPs are still under the impression that Type 1 only exhibits in children and young adults, so if you are a mature adult, "you must be Type 2" or at least that is their logic. It is something they may have mistakenly picked up in training many moons ago and sticks in their mind. Practic nurses can pick the same thinking up from the GP or from an older generation DSN who may also have this blinkered approach. The more knowledge you gain as a patient, the more awkward questions you can ask them to challenge this thought process and hopefully get referred to a consultant. Asking why they think you are Type 2 is usually a good starter? They can't say you are overweight so, If they say "your age" you can ask them to explain how that is relevant. Mention our ex Prime minister Teresa May as a prime example of a middle aged woman developing Type 1. There are lots of us.... mena and women here on the forum who developed it in out 40s 50s and 60s. There are 2 consultants at my hospital trust and I am led to believe they have a bit of a competition each year between themselves as to who has the oldest new Type 1 diagnosed patient. I believe there have been 80 yr olds. 

Wishing you a lot of luck in getting some answers and the correct diagnosis/treatment and hopefully seeing some clinicians who know what they are talking about because that junior doctor's comments don't inspire confidence.


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## harbottle (Apr 13, 2022)

I've read that metabolic syndrome (the cause of insulin resistance) is a good indicator of type 2 (BMI > 25, LDL high, HDL low, Trigs high - high trigs are possibly a major reason for resistance).


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## trophywench (Apr 13, 2022)

Ian68 said:


> Just wondering if you have had your thyroid removed. As that is the same dose I am on since my thyroid was removed. I am  directed to take mine in the morning 30 minutes before eating


Why do you say that?  I need 125g Thyroxine daily to keep my TSH around 1.0  and no way Pedro has anyone removed my thyroid.  I'm just hypothyroid, same as other folk may have RA or be coeliac, as well as have diabetes, simply whatever other auto immune condition decides to come and live chez nous!


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## GerrieS (Apr 13, 2022)

Thanks again for taking the time to reply.  I will let you all know how I get on tomorrow.  Off to research metabolic syndrome and buy some Ketostix although the junior registrar said not to worry until BG was above 20 for more than 2 hours!  So comforting!


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## Ian68 (Apr 13, 2022)

trophywench said:


> Why do you say that?  I need 125g Thyroxine daily to keep my TSH around 1.0  and no way Pedro has anyone removed my thyroid.  I'm just hypothyroid, same as other folk may have RA or be coeliac, as well as have diabetes, simply whatever other auto immune condition decides to come and live chez nous!


Only had mine removed the end of Jan. and they put me on 125mg so was looking for a rough yard stick. been waiting for another review as I still feel rubbish with hypothyroidism systems. So they increased it to 150mg Have a blood test next week so hopefully it will get sorted then.


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## trophywench (Apr 13, 2022)

@Ian68 - I have no idea what they test when you no longer have a thyroid or whether you need different/additional drugs other than bog standard Levothyroxine.


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## TheClockworkDodo (Apr 13, 2022)

GerrieS said:


> Thanks again for taking the time to reply.  I will let you all know how I get on tomorrow.  Off to research metabolic syndrome and buy some Ketostix although the junior registrar said not to worry until BG was above 20 for more than 2 hours!  So comforting!



My blood glucose was 20 when I was diagnosed, and I spent a week in hospital with DKA, so you really want to catch it before it gets to that point!  I had none of the symptoms of DKA except for the blurry vision I'd had for about a month (and my optician had suggested I get a blood test for diabetes, as it's a general symptom of high blood sugar, but it didn't seem that urgent), rapid unwanted weight loss over about a fortnight, and then tiredness.

I was told after diagnosis to test for ketones if I got two consecutive readings over 14 or one reading over 17.


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## GerrieS (Apr 14, 2022)

Ketostix will arrive tomorrow.  Doctor is emailling for an urgent referral to the consultant with the aim of managing the condition more effectively and looking at the possibility of Type 1.  Thank you for all your help.  Will let you know how I get on.


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## everydayupsanddowns (Apr 14, 2022)

GerrieS said:


> Ketostix will arrive tomorrow.  Doctor is emailling for an urgent referral to the consultant with the aim of managing the condition more effectively and looking at the possibility of Type 1.  Thank you for all your help.  Will let you know how I get on.



Great to hear they are responding swiftly @GerrieS 

Look forward to hearing what they say   though the results can take a while to come back, so do ask for advice on what to do in the meantime!


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## GerrieS (Apr 14, 2022)

This is turning into quite the saga.  At 4.45 the doc phoned back to say that the consultant had replied to the email straight away.  I had to collect a prescription for Gliclazide 80mg and take 2 a day.  Looks like I will be starting on insulin next week.


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## TheClockworkDodo (Apr 14, 2022)

That's good news, it sounds like they are taking you seriously.  I hope they put you straight onto basal-bolus insulin (also known as multiple daily injections, or MDI) as that's what you'll need to be on sooner or later if you're type 1, but they sometimes put type 2s who need insulin and slow-onset type 1s onto more old-fashioned (and much less flexible) insulin regimes, at least at first.  It's worth asking about MDI if they suggest anything else, as even if you do turn out to be a type 2 in need of insulin it will make life easier to have insulins which you can adapt to your lifestyle rather than having to adapt yourself to the insulin.

In the meanwhile, has the doctor given you any advice about hypos (episodes of low blood sugar)?  They should do when they give you the insulin, but it is possible to get hypos with Gliclazide as well, so it would be sensible to watch out for them, just in case.  If you get any strange symptoms (like being dizzy, shaky, sweaty, confused, pale, or anything else that feels odd) test your blood sugar and if it's below 4 have something sweet immediately to get it back up again - in theory you should have 15g of very fast-acting carbs and most people use glucose tablets or jelly babies, but half a glass of fruit juice, a couple of teaspoons of honey, or if you have nothing else a couple of teaspoons of sugar should work.  Chocolate (or anything else fatty) is not suitable.


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## GerrieS (Apr 15, 2022)

Hi there, thank you for all your good advice.  I_ w_ill certainly ask about MDI.  I got those symptoms three weeks ago when it fell to 6.9.  I was warned about hypos but BG is still between 11 and 16 so not an issue just yet.  However, the dextrose sweets are on standby.


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## rebrascora (Apr 15, 2022)

GerrieS said:


> Hi there, thank you for all your good advice.  I_ w_ill certainly ask about MDI.  I got those symptoms three weeks ago when it fell to 6.9.  I was warned about hypos but BG is still between 11 and 16 so not an issue just yet.  However, the dextrose sweets are on standby.


So pleased you are getting appropriate and prompt treatment.

Do carry the dextrose tablets with you at all times including by the bed and in the bathroom.... Hot baths/showers can drop BG levels so it is a good stash hypo treatments around the house now as well as in pockets and handbags (if appropriate) and in the car if you have one etc even if your levels are high at the moment. You can guarantee a hypo will catch you out at some point, especially once you start on insulin, so getting into a habit now of having hypo stashes dotted about the house and in pockets is worth doing. Your first few hypos can be quite debilitating so do be prepared. Also a good policy to take your testing kit to bed with you so that you can test and treat a hypo without getting out of bed if you need to. I find that I don't feel bad whilst I am lying down when I get nocturnal hypos but it can hit me if I need to get up and start wandering around looking for test kit or hypo treatment and definitely not good if you need to negotiate stairs.... so always having stuff to hand is really good practice.


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## TheClockworkDodo (Apr 15, 2022)

GerrieS said:


> Hi there, thank you for all your good advice.  I_ w_ill certainly ask about MDI.  I got those symptoms three weeks ago when it fell to 6.9.  I was warned about hypos but BG is still between 11 and 16 so not an issue just yet.  However, the dextrose sweets are on standby.


You will sometimes get "false hypos" when your blood sugar has been high for a while and then drops fast, when you don't really need the hypo treatment as it's not below 4, but you do really feel the drop all the same - something like a small piece of fruit (eg dried apricot) or a biscuit will help then.

If you turn out to be type 2 @Mrs Mimoo 's advice sounds good to me - but if you're type 1 and they put you on MDI you can eat as many carbs as you want, you will just need to learn to adjust your insulin to match what you're eating.  I think I eat abut 250g carbs per day (and my BMI is around 20 and my HbA1c is mid 40s) - on the other hand I believe @rebrascora is still doing the low-carbing she started when she had the initial incorrect diagnosis - so for type 1s it really is a case of eating whatever works for you.


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## GerrieS (Apr 20, 2022)

Hi there, met the Prof today.  He is very thorough.  We had a good chat,  He's thinking Type 1 but the tests will confirm either way (4 vials of blood taken).  I have been put on MDI.  First bolus injection at tea time -  4 clicks of Fiasp.  BG down to 7.3 - yippee!  Basal is Toujeo - 10 clicks and I start that tomorrow morning.  Weirdly happy to be on insulin.  Finally think that I am getting somewhere.  Also saw the diabetic nurse for lots of info plus a new BG and Ketone monitor.  Have a big folder to digest and she will see me online once a week for the first month plus have her number and email.  Also saw the dietician for a similar amount of info plus lots of YouTube videos will be coming my way.  Again have her contact details and will see her once a week too.  I am very impressed with the system now that I have accessed the correct help.   Thank you all for your help and advice.


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## TheClockworkDodo (Apr 20, 2022)

That's really good news, and I know exactly what you mean about being weirdly happy to be on insulin 

The doses they put you on at first are their best guess, so don't worry if they need to change them a lot over the first few weeks - if you think they aren't right, just call the diabetes nurse.  They started me on 16 units of basal and I had a hypo in the night every night for the first week - after that they dropped it to 6 units!


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## Bruce Stephens (Apr 20, 2022)

GerrieS said:


> Weirdly happy to be on insulin.


Nothing weird about it: insulin should give you the ability to control your BG. (At least, it offers a fairly direct way to reduce BG. Controlling BG in this direct way is demanding, but if it's what you have to do then that's how it has to be.)


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## GerrieS (Apr 21, 2022)

Hi there, thank you Juliet and Bruce.   All going well.  I did not want to bring BG down too quickly and they agreed.  Asked for MDI as I am quite disciplined.  No issues so far and long may that continue.


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## Mrs Mimoo (Apr 21, 2022)

I'm glad you had a good doctor. It does help!


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## everydayupsanddowns (Apr 22, 2022)

GerrieS said:


> Hi there, thank you Juliet and Bruce.   All going well.  I did not want to bring BG down too quickly and they agreed.  Asked for MDI as I am quite disciplined.  No issues so far and long may that continue.



Great to hear you are being so well looked after @GerrieS 

Those contact details for DSN etc can be a godsend in the early months/years


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