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Taking Dapaglifloxin, last HbA1C test worse than usual, and other effects

B

Babooshka59

Newbie
Messages
4
Type of diabetes
Treatment type
Tablets (oral)
I'm Type 2 diabetic, and as I was finding it hard to tolerate Metformin due to digestive issues my GP prescribed Dapaglifloxin, which I have been taking since February. I've also managed to shed 20 pounds in weight this year, despite having a recognised eating disorder (binge eater) and Long COVID, which depletes my energy so I am eating more carbs than I ought just to get my energy levels up. I still need to lose another 20 pounds to get back to the weight I was before my health began to slide, and have been told by the GP practice's diabetic nurse that it is very possible I can still go into remission if I manage that. I therefore expected my HbA1c readings to improve when I had my last test a few weeks ago, but they have shot up since last time to the highest reading ever for me (76) despite the new meds and the weight loss, and also me taking more exercise (about an hour a day gentle walking, in spurts around a private dog walking field). So this increased HbA1c result is disappointing to say the least, and I'm also worried. Have others here experienced similar on this drug? I also seem to be constantly peeing, up to 4 times an hour during the day on occasion, and at least twice in the night. I also suspect I am dehydrated as I find it difficult to remember to take fluids (been like it since I was a kid, I just don't feel thirst) and can't drink much at a sitting. My skin has become very 'loose' and wrinkled looking, especially my hands and arms, and I sometimes wake in the night with a very dry mouth. I'm reluctant to keep drinking more and more (I drink mostly water) as it seems the moment I do I need to visit the loo. I've no idea how much extra fluid I ought to be taking on this drug as the leaflet doesn't say. I'm due a call from the practice diabetic nurse on 28th April, but not expecting much help as I don't feel they are particularly concerned about my situation, and I rarely seem to get any specific answers to questions I raise with them. I'm 65, and was diagnosed in 2018.
 
I'm also Long Covid.
Before covid I'm diagnosed Type 2 Diabetes. (2021) BMI of 35

After Covid+ (Dec 2022) I have lost over 30 kg (66lbs) weight loss and haven't regained back the weight. I'm now BMI of 24.

I noticed when I reduce ozempic from 1mg to 0.50mg or 0.25mg - my glucose will rise up. This is sign of insulin deficiency.

Meanwhile as I'm on Ozempic and my last Hba1c was 5.3 in sept 2024. (My cgm average glucose is slowing creeping up for 90 days). I'm due for new Hba1c blood test.

I'm still using high dose of ozempic to manage my diabetes - which isn't typical Type 2 Diabetes - in Type 2 you are supposed to reduce the medication and your own producing insulin will works to manage your diabetes after weightloss.

Another clue - I'm not yet in remission for "Type 2 Diabetes" after more than 10 to 15% weightloss.

When I'm unwell or on prednisolone, I get high glucose 13 mmol and Ketones of 1.2 mmol - this is another clue - insulin deficiency.

I recently had HLA blood tests - got high risk for Type 1 Diabetes and other autoimmune diseases.

From Covid+ - my immune system started attacking. (I do have signs of autoimmune diseases symptoms that is overlapped.)

All those makes me suspect I'm not a typical Type 2 Diabetes but leaning toward to autoimmune Diabetes like LADA and very early Type 1 Diabetes.

So my next step is to build up timeline with evidences... and look into 2nd opinion for Endocrinologist who is LADA complex diabetes.

Esp there is a lot of research people who get covid+ ends up afterwards Type 2 Diabetes or Type 1 Diabetes.

I would suggest get tested for Type 1 diabetes - gad tests and antibodies, and your c-peptide checked out as well.

There is LADA/Type 1 Diabetes you can be negative for antibodies and got insulin deficiency. Esp of very very slow burning of beta cells.
 
Wow, this is very interesting. Firstly thank you for rpelying at such length and in such detail. Secondly, I will ask for the tests when I speak to the Diabetes nurse next week, though not expecting her to agree - they are not very on the ball with diabetes here at my surgery and I've never felt my care was good. At one point I was left for best part of a year without any meds at all. I live rurally and care down here is pretty **** for just about any conditon you can name. Interestingly, my brother (who has never had COVID) was diagnosed as Type 2 in his early 30s. After years of illness and nothing working well (he lives alone and was having night hypos, very dangerous), he was finally tested 3 years ago and they realised he is Type 1. He's now totally insuLin dependent. He's younger than me by nearly 6 years. He also has other auto immune diseases that have developed since his initial T2 dianosis, we were only talking about this on the phone last week. He has osteo-arthritis, has several other conditions that he says are auro immune, and he is now being tested for MS. Scans do not show any changes in the brain or body but the hospital feel he has a fairly rare form of the conditon. He is awaiting further tests. I don;t have any other conditions, and last year was told after my diabetic eye screen that I don't need to have another for 2 years becaue my eyes are so good. I wonder at the wisdom of that but I belioeve it;s down to NHS beng so strapped for cash the yare cutting corners wherever they can. So armed with what you have told me, I'll be asking the Nurse next week abot those tests. I wish you all the best goign fiorward, especially with the Ozempic being prescribed for someone who actually needs it. I have a diagnosed binge eating disorder, but when I asked for Ozempic I was told the surgery needed written permission from the big hopsital in next door Devon, and I never heard any further. This was well over a year ago. I was told my BMI was high enough to warrant the drug, so I have a suspicion they refused me due to my mental health issues. So having lost the 20 pounds all by myself, which has been a full on struggle against the eating disorder, I am fortunate, even though it is tough, but I bet it is not even acknowledged by the Diabetes nurse.
 
My family also got other autoimmune diseases of MS, B12 Deficiency, Psoriasis etc.

I'm not yet diagnosed for Autoimmune diseases but the blood test have picked up ANA - Negative but positive Cytoplasmic antibody speckled. I have signs of psoriasis/lupus symptoms it is overlapped - but a long waitlist for Rhuematologist of 1.5 year. This will buy me time for my antibody to build up over the time for Rhuematologist to narrow down which one of autoimmune diseases.

My mum got Psoriasis confirmed she also got B12 Deficiency for years. (we both caught covid same time and ended up Long covid.)

Only different I'm the one with massive weightloss for post covid. So possibility the covid triggered/supercharged the Type 1 Diabetes genes.

With your brother - he has got autoimmune diseases. So there is chance is you would got the autoimmune diseases genes as well that may not yet triggered or could be triggered by covid.

My own GP is happy to referral me to Endocrinologist for a 2nd opinion. As I did try public hospital to referral back to Endocrinologist but it got refused coz it was focus on well managed Type 2 Diabetes Hba1c.

So I will try private Endocrinologist with my evidences of list - so have to research for early LADA Endocrinologist who deal with those complex diabetes. To see if get the diagnoses of LADA.

I will wait for Covid specialist appointment next month - as they were so concerned of my weightloss which is not an typical Type 2 Diabetes when I had appointment last year.

It is going to be an journey to try get right diagnosis this time and right treatment esp I'm not on insulin injection either.

Yes esp I'm still med dependent for Ozempic to managed diabetes and it is matter of time esp insulin deficiency - as my own producing insulin is partly working.

Hopefully you will get the answers so keep logging up evidences of your diabetes... ie if Type 2 oral medications doesn't works, any unusual things ie with foods on protein or low carbs etc if you noticed the differences of pre and post covid with your diabetes.

Good luck and hope it helps a bit. Just hard when you have to advocate yourself to arm up with evidences.
 
Update, and I can't say I'm very happy. I finally got that telephone call from the diabetes nurse on 28 May, 28 days after I was told my HbA1c had risen again sharply, and they'd need to speak to me. I told her my concerns and she didn't seem worried. She also couldn't give any reason as to why my number has risen despite losing 21 pounds/9.5 kilos since the start of this year. She then suggested I have a C Peptide blood test, as she put it to see if my pancreas is still creating insulin. That appointment for bloods was made for 11 June, with a follow up on 18 June to actually go in and see her.

Two days ago I started getting odd sensations in my hands and (to a lesser extent) my feet, like pins and needles tingling but also a bit like nettle rash after you've been stung. A few little shooting pains to start, but the sensations grew in frequency until I was quite alarmed yesterday when they were constant and over both hands up beyond wrists by mid afternoon. I also had some tingling periodically on my face so I checked out the NHS 111 online pages. There's a specific area for Diabetes, so I followed the prompts and ended up getting a message that suggested I'd get a call within 6 hours. That was at 4.38pm.

I got the call at 12.45am, woke up and stumbled downstairs to the landline. The duty doctor seemed unconcerned, said he wasn't there to manage my diabetes, which I thught was rather dismissive. I said I'd requested a call beause I was concerned about these odd feelings, and was not that happy with the way my diabetes is being treated. Obviously it is not possible to talk to anyone at the surgery over a weekend. I told him I'd been eating erratically since last Thursday, tring to avoid anything that had even a trace of sugar (almost impossible as most 'food' amd ingredients are full of sugar; no wonder the UK has a Diabetic 'epidemic'!) and therefore ate very little generally. No comment to that but he did admit that having to wait a month after getting a high bloods result 'wasn't ideal'. He said to contact the surgery today, so I'll do that but I just wanted someone to tell me if there was any need for concern, especially as my blood test is still almost a fortnight away, and he didnt respond.

Is it just me being over sensitive or is the foregoing not such a good response and should I expect better? One thing the 111 Doctor did say was that if I'm unable to tolerate Meformin there are other meds that can be tried apart from Dapagliflozin, which was news to me. The impression I have isthat that's the only two meds they can offer. At one point last year I'd been left without any Diabetes meds at all when I had to stop using Metformin, and it was some months before Dapagliflozin was suggested after I again contacted the surgery and voiced my concerns about my health.

I can only compare my Diabetes care with my brother's, whose seems to be very good with regular appoinmtments face to face with the Diabetes nurse, he also gets to see her very quickly if he has any concerns at all, but he's Type 1 and he lives in London so services are probably better there.

Kiwigal, thank you for suggesting keeping an eye on any differences pre-and post-COVID. I speak (via video call) this afternoon with the hospital Long COVID doctor, who was lovely when we spoke in January, so I'll ask what he thinks.

Frustratingly, I can't recall exectly when I started getting the digestive issues on Metformin slow release, if I could I'd know if it was likely to be COVID related. I'd go for a private second opinion over the whole Diabetes issue if I could afford to, but can't as my only income is from disability benefits, and I'm worried they'll soon be culled. The Diabetes nurse told me that HbA1C can rise when someone is under stess (which was news to me) and the past 5 years have been incredibly stressful, but more so during the past 12 months.
 
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I hope you will get answer from your Long Covid specialist - esp they are updated with researchers about Covid and knowing Covid can cause Type 1 and Type 2 Diabetes post Covid.

You're welcome, I hope you will get some answers. It is too long to wait for blood tests for your increased Hba1c for your diabetes nurse arranged. But at least it is this week it is happening.

Next week I have got Long Covid specialist appointment via telehealth (video call) as well, and will see what they say too.

Long Covid has also increased neuropathy for me as well. With you, you got increased Hba1c which also cause neuropathy.

I'm overdue with Hba1c blood test so will ask GP to do this after Long Covid specialist appointment as my Long Covid specialist will send the report to GP for recommendations of treatments/referral/tests etc.

Yes stress can increase your glucose as well.
 
I went to GP appointment unexpected this week.. got early sinus infection so my GP gave me Type 1 Diabetes blood tests paperwork... c-peptide, insulin (fasting), glucose random, GAD Ab, Islet cell Ab etc. Which I will get blood test done next week.

GP decided not to do Glucose Tolerance Test - the yucky glucose drink test due to I'm on Ozempic which it will need to be stopped for weeks before GTT so it is unsuitable to stop Ozempic for weeks, esp my glucose will rise up within week.

Tomorrow is Long Covid specialist appointment. Fun times.
 
Hope you get some answers soon.
 
Hi, I am type 2 metformin and gliclazide. HBa1c was 49 in late 2023. Pharmacist at practice stop gliclazide and reduced metformin from 3x500 to 2x500. Replaced gliclazide with 10mg dapaglilisin. Fasting levels rocketed to 9 to 10.5 having been 5.5 to 6. Despite advising doctor of change I was made to wait 3 months for HBa1c in Jan 24. This gad increased to 61 and my retinopathy test was appalling. Nearly 18months later after restarting gliclazide it is back to normal.

Two observations, once again under pressure to drop gliclazide because latest HBa1c is 45. Secondly I was peeing hourly almost on the hour a side effect of dapagliflosin so no decent sleep.

One gliclazide dropped and the DN wants to stop the other one. I have no support from Surgery they will change drugs arbitrarily. I feel I am fighting a losing battle despite funding prick testing and Contour Plus monitoring by myself.
 
debs248 said:
Hope you get some answers soon.
Click to expand...

Yes me too I was meant to do blood test last week unfortunately it was too long to wait over hour. There was 5 other people before me with ticket numbers waiting and one person came in and cut in without ticket number to get their blood test. So I had to leave early to break the fasting. Coz it ended up too far long for fasting overnight waiting for morning blood test.

Today I went to different blood test clinic - got first ticket in line. Now it is waiting time for the blood tests results.
 
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