Is this normal?

[GerrieS]

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?

 

[Drummer]

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.

 

[Leadinglights]

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/

 

[GerrieS]

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?

 

[GerrieS]

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

 

[Leadinglights]

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.

 

[Ian68]

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.

 

[Ian68]

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.

 

[Deleted member 34756]

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

 

[GerrieS]

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.

 

[GerrieS]

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.

 

[TheClockworkDodo]

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.

 

[rebrascora]

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.

 

[harbottle]

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).

 

[trophywench]

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!

 

[GerrieS]

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!

 

[Ian68]

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.

 

[trophywench]

@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.

 

[TheClockworkDodo]

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.

 

[GerrieS]

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.